Shaky's World

The Process of living with PD

2011-12-18T07:13:00.000-08:00

Life is a process. In fact a good friend and preacher friend of mine said life is the process of dying....absolutely true. Someone else said " nobody gets out ( of this life) alive. True again.

But it's the process you see that usually gives us a challenge. And anyone who has an illness, especially one like PD that affects the mind will soon enough find that there is a process within the process. As the disease moves relentlessly forward I am finding more and more that PD has changed me in so many ways. And not always for the good. My wife and caregiver also sees where PD has changed her.

Those of us with the disease may find that we have a lot of trouble communicating and phrasing our thoughts so that others can follow our train of thought. We don't always make the best decisions sometimes either. This can lead to tension and confusion between a couple dealing with the disease and resentment and other negative feelings. In our case, when those kinds of issues began to develop, I was slow to recognize them and refused to see how PD was affecting my thought process and decision making and communication skills. After all, in my business career I excelled at communication and decision making and my thought processes have always been organized and effective. Now, even though I run a 1.5 million dollar retail operation rather well, that skill doesn't always carry over at home. Some of this may be that I am so filled to capacity in my job that there is no room for much else or I am so exhausted by the effort it takes to do the job while struggling with PD that there is no energy left. Even though both are true, there has also come the realization (by me) that I am NOT always clear in my communication with my family. I DON'T always make the right decision. Then when my family provides feedback, sometimes it makes me feel inadequate and incompetent which causes doubt and at times, apathy . After all, if I am no good at life any more, why try ? After a couple years of the cycle, it begins to take a toll.

When the realization hits that my mind is not hitting on all eight cylinders on top of not liking the physical "me" I see in the mirror each day, now I don't like who I have become. My wife feels exactly the same. She doesn't like that she has lost the me she fell in love with and she doesn't like who she has become in reaction to who I have become. Sounds like disaster in the making and field day for the divorce attorneys !

However, that is not an option for either of us. So what is the answer to this very tough situation ? For us , it will be finding a good counselor ( to be recommended by my Neuro) who specializes in treating couples with these kinds of issues. Along with lots and lots of open and honest communication. It will hurt sometimes, but the hurt will quickly turn to hope as it always does when two people who are committed and love each other find the common ground and conquer the obstacles thrown in their path by PD, life and this process we call life

Apathy, depression, fatigue, this puzzle called PD. We must put one foot in front of the other day after day and remember that life is a wonderful gift that is meant to be lived and enjoyed.

Shaaky

Changes in Latitude, Changes in Attitude....

2011-12-14T19:02:00.000-08:00

A Jimmy Buffet song ? Seriously ?
Absolutely.

The title if nothing else fits right now. We recently changed latitudes....longitude too for that matter. And for sure my attitude has been changing....the rest of the lyrics fit pretty well in to someone like me....getting older, missing things from the past....

Getting harder to type now so blogging has become a rarity but I always feel like I have something to say that might make a difference to someone, somewhere. Wondering if Facebook Notes is more appropriate.....but it only reaches my social community not the world...

Anyway, we moved to a farmhouse in the country closer to my work. By springtime I hope we will be back in a routine. We want to put in some laying hens in the chicken coop....have a garden, raise our kids in a less stressful , more rural area and teach them things we learned growing up like responsibility, work ethic, how to do something other than play X box in your free time....
It's going to be great fun and adventure !

As for me, well, my shop is gone but I do have a corner in the mudroom to tinker on guns and reload. And 40 acres to wander and shoot on. Maybe one day I can have a little building like my friend Jim !

The disease is relentless. My wonderful wife and I are learning how to navigate thru some very tricky waters with memory loss, inability to express OR recognize some emotions, anger control issues, etc. Young onset is totally different from normal age onset with a set of problems and issues that make mush of your brain !

Then there is my Dad, 95 years old, went down with 7 broken ribs , spending 2-3 nights a week at his home caring for him. Watching his decline has been an education all on it's own.

On a more positive side, my oldest child just got a job that should set him up for life. He is very happy and I am so happy for him. He recently watched his little sister have her nightly going to bed "dance" and special words with me. You would have to see and hear this to understand but it is special.

While it is true that I am unable to do many things I want to still do like building and racing cars and a whole list of other more minor things....I am fortunate to know exactly what I want to do going forward.

Live life as simply and stress free as possible enjoying as much time as I possibly can with my wife and kids. I have had my time to have fun. My time is for them now. Filled with as much love and laughter as I can ....

Courage

2011-05-27T17:34:00.000-07:00

Life in general is challenging and usually will require courage at some point or another. Recently, I was given an example of courage that caused me to stop and evaluate my future and the future of my family. Courage can take many forms and shapes and can even be mistaken as stupidty !
For instance, when I was diagnosed with PD we were eight months pregnant with our daughter Rielly-Anne. Most would agree that having a child at fifty years old took courage on my part. Many would say and have in fact said it was stupidity.
A few years later, when we decided to have another child , it was difficult to find anyone who didn't think it was a stupid or reckless decision. Now, with Cecilia almost two years old, while challenging, it most certainly was not stupidity. It was carefully considered, planned for, and has brought us much joy and happiness. Was it courage ?
Yes. The courage to live our lives in spite of PD. The courage to break from tradition. The courage to begin something without knowing how it will end. The courage to begin something knowing certain things would likely happen. But not stupidity.
This week my oldest brother who has PD+MSA ended up in the hospital. Infection, very weak. He has a catheter, a feeding tube, can't speak or do anything else for himself. When I saw him the other night, I felt sure the end was near. His wife was very upset and felt the same way.
All I could say to him was that I loved him, take it easy and relax, and I told him if I could I would take his place. It broke my heart to see him in such a horrible condition.
When I talked to my sister in law, she felt guilty because she talked him into the feeding tube over a year ago when he initially did not want one. She felt she had prolonged his suffering. In reality, HE made the final decision, not her. And in doing so, he was able to be around to see what is likely his last grandchild.
My sister in law was struggling with asking him if he wanted to remove the tube since at first he didn't want it but she was scared he was too weak to even give an answer. This morning , after talking to a counselor, she found the courage to ask him. Again, HE made the decision to keep the feeding tube.
Many people would view his decision as stupid much like our decision to have another child. Obviously, I am inspired by both he and his wife. They have more courage than I can imagine. He has chosen to live , trapped in the prison that is his body. While he is unable to communicate his reasons, I believe it is out of love. His love for his wife and family and knowing that his passing will be more than diffficult for them. By the same token, his wife has stood by him, cared for him non stop under the most difficult of human conditions. Why ? Surely love...but also courage. Almost 100% of the time, someone or more than one will tell the spouse of a PWP to run.....because the way is difficult, painful, ugly, debillitating and devastating.
How much courage is that ? Immeasurable. Inspiring. Awesome.
Those of us with PD or any other chronic, fatal disease are lucky if we have spouses like my sister in law and my wife. I can only hope to be as courageous as my brother one day.
I have wanted to be like him since we were kids and have always looked up to him. It would appear that we have a lot more in common than we may have thought and I STILL look up to him..................

WHILE YOU SLEEP.......

2011-04-25T19:51:00.000-07:00

While you sleep.....I lie awake. Yet, dreaming all the same. Dreaming of the escape sleep offers my body for a few hours.
While you sleep.....I lie awake. Looking at you and the girls, listening to the night sounds that are made by you all.
While you sleep.....I thank God for the day, for you, for our children and ask him for a new day, each day a gift.
While you sleep......I try not to forget. The smallest detail. But I know I will ...it happens more than I likely know.
While you sleep......I sometimes try to forget. How good normal can feel. What has been lost. How time flies.
While you sleep.....I fear the future and what it may hold. Reminding myself that God is in control.
While you sleep.....I pray. Usually not for me. But for others who need God's blessings more than I. And I know you pray for me.
While you sleep.....
While you sleep.....
While you sleep.....

It's the little things.........or Living with Parkinsons on a daily basis.

2010-11-17T19:07:00.000-08:00

A few years ago, not long after I was diagnosed with PD, my wife came across something on the internet titled " but you don't look sick ?" and she wrote about it on her blog Life with Shaky...

At the time, it was appropriate as one had to look closely to see the changes PD was slowly bringing to my body. Not so much anymore. Most people can tell now that something is wrong just by looking. Most think maybe a stroke, some few who are familiar with movement disorders , know it is PD. In any case , it is a disease that is relentless in it's progression and doesn't go unnoticed for long.

As this disease moves ever forward I have found myself reflecting more and more on the little things that are affected. Seemingly small things, yet when taken collectively add up to a bigger issue. These little "things" may not be so apparent to those around us and as a result there are many people who just don't understand or so I want to believe.....One of the goals in starting this blog was to provide education and insight into the life of a Parkinson's patient. So this post is simply to educate anyone who wants to know how it feels to deal with PD. Quite simply, my goal is for anyone reading to be more aware of how PD and other chronic diseases can interfere with every day life.

Not in any particular order, here are some "little things"-

Sleep deprived- I have random nights where my meds just don't seem to work and I have to function on two to three hours of sleep. I rarely get more than five hours and never rest well. After several weeks , at some point, on a day off , I crash and burn. Frustrating because I miss most of my day off, time with my family, etc. Equally frustrating to be up at 2 am when all the world seems so snug in their beds and I am alone , pondering how I can get some rest...

Never enough energy for anything but essential activity (work !) .....extra activity ? At a great cost... I could write a book on this so lets move on...actually lets stop here for a minute. I will try to provide a link to the story I mentioned above " but you don't look sick " it has an interesting analogy about energy levels and spoons, or if you are into video gaming , how many "lives" I have to use up before my game is over for the day...By the time I work about eight hours, six days a week, spend time at home with my own family, take care of the yard or spend an hour or so on my own every two or three days, the only time I have left I need for trying to rest. I feel guilty because it's hard to find time to visit my Dad, 94 years old, and I know he doesn't comprehend why...guilty that I don't see my oldest brother with PD+MSA more often, guilty that I don't always have the energy for some of the more challenging activities with my kids, guilty, guilty, guilty.....told you I could write a book....but it is what it is and when my battery life is on zero, I am done. Guilt or no guilt, outta time. Game over. At least for that day.

I have learned to live day to day and to cherish each hour of each one. Actually, I live four hours at a time , but that is another post.....

Reading to my daughter - If my meds are in the "off " mode, that is to say , if a dose is to be taken in the next hour, all bets are off on me being able to sit still long enough to read more than one childrens book. Then I feel guilty having to ask my baby to hop out of my lap so I can get up and move around and stop the restless body syndrome. By the time I am ready to resume a 4 yr olds attention has moved on and I lose my Daddy moment....or if traveling on an airplane, I have learned to dose up an hour before flight time or I will be all but unable to sit in my seat which is a problem to the stewardess and suspicious to the air marshall....

Another issue - same subject - sitting in an all day business meeting, conference or training session. My body just HAS to be moving when the pills start to wear off. In recent years I have wondered what peers and coworkers are thinking when Shaaky has to move around while the keynote speaker is on stage ...a good transition point ....co-workers and peers.....what do they think ? How have they responded ?

I am a General Manager for a retail auto parts store. I have 10-14 direct reports and I have to say that my team has never looked upon my disease as a handicap or hardship. At least not to my knowledge. In fact, most of them go the extra step to help me if something is difficult or challenging. My boss never mentions it. Many people with PD go on disability as soon as they possibly can. I suppose that has some benefits but I like what I do and I want to do it as long as I can. It's refreshing to be accepted and supported at work. Some are not so fortunate.

I have only scratched the surface here regarding little things that PWP's have to deal with on a daily basis. There are many, many more little things that we lose, miss out on, slip away so slowly that we fail to notice for a while. Add them all up and sometimes it can seem like too much.

However, when that happens, I quickly remember that one of the good things about PD is also one of the bad things. It slows you down. Literally, emotionally, physically....and that slow down has a silver lining. I now have to have patience with myself so it is easier to be patient with my two little ones which equals more quality, quiet, special Daddy time. If I were normal, they would be growing up under my nose and I would be too busy to notice or participate. Now that is a silver lining !

This same appreciation extends itself into every part of my life. Family especially but work, friends, hobbies, they are all looked upon with a different appreciation before PD. So, what is the bottom line ? It may really seem strange to you who don't have a chronic condition, it may seem really, really kooky , weird or unbelievable to most anyone....I am happier now than before I had Parkinsons.....that's right, happier than before. Why ? Because of what I learned about living life. Do I wish I could go back and change it ? Not have PD ? Sure, but only if I could retain what I have learned.

Yeah, it's all about the little things in life. I just prefer adding up the pluses and letting the minuses slip away in the night.

Here is how you find the link I mentioned above....simply Google "the spoon theory" - It is worth your time.

Thanks for reading Shaaky's World !

Like a Sponge...........

2010-11-10T15:57:00.000-08:00

Today at work was a little different from most. My boss gave me a special assignment. My task was to spend the day with a new assistant general manger teaching her everything I could about business planning, profit / loss statements, financial analysis , etc. This assignment came my way because I am good at this stuff. Seriously...

One of the things I have enjoyed the most at my job over the last 8 years is hiring and training young people and seeing them grow and learn. In some cases, actually "grow up" as is the case with my own assistant manager whom I hired as a part timer at 17 years old and is now married, owns his first home and with any luck will one day take over my position.

Anyway, today was different. The new hire was a total stranger and I had no idea what to expect. As it turns out, she was , as she put it, a sponge, soaking up all she could in one short day. Eight years of experience on this job plus another 25 or 30 years of learning to think analytically and methodically. In one day.

Impossible ? Probably. But at the end of the day I felt that she "got it". She told me she got it. Said she got a lot out of our time together. I hope so.

My little daughters are like little sponges as well. Rielly-Anne, almost four, is very smart for her age due mostly to the fact that Mary "teaches" her things , encourages reading to her, imagination, and well, just plain works at being a great Mom. Now Cecilia has come along and we are both amazed at how fast Cecilia is learning. Faster than Rielly-Anne did and why ? Because she spends all day following Rielly-Anne around wanting to do the things her big sister is doing. Rielly-Anne didn't have that. Cecilia is taking full advantage of it though and learning at an amazing rate.

As parents we want to teach our children all about the world and about life and as toddlers and young people they are only too willing to learn. Then they become teenagers and think they know it all already...the willingness to learn is all but hidden amongst all the world has to offer them. Then one day you wake up and they are grown, gone, out on their own and the opportunity to teach is, for the most part, over. I know because I have them at every age !

As adults , most of us have realized that if you are smart, you never stop learning. You can learn something from everyone and I do mean everyone , you come into contact with each day. There are lessons we have learned that have taken some of us most of a lifetime to master. What we hope for is that we can pass this knowledge along to our kids in a more timely manner. For whatever reason though, the "sponge" is hard and just doesn't absorb like it did when it was new. Most times , grown children are listening, and years down the road they will say ...." you know , you were right about that " . I have said those words to my own parents. Usually right after I ignored some good advice and found out the hard way that I should have listened to them. Instead, we assume we know better or that "this is different" or "times have changed" or we simply aren't interested in the opinions of parents or others. And sometimes, a person just has to go their own way and as parents we get to warm the bench unless called upon. It's hard but you don't get a choice. Try as we might, we cannot save them from the school of hard knocks and experience.

It would be so much more simple if the older ones would still follow an adult around like Cecilia follows Rielly-Anne , learning all the time from a big sister....
Children, young or old can fall down and get hurt and for parents that is a frustrating thing no matter the age. When they are young a band aid or even a few stitches will usually take care of it. When they are grown, the stakes are usually a little higher.

In the end though, more often than not, young or older, the results are the same. They get through it, they heal up, they learn something and life goes on. What the parents of grown children have to learn is to have a little confidence, learn how to hold on "loosely" and remember that we made mistakes too. What we might view as a bad decision by our child ....well , we could be right.But it might be the right decision for that person at that time as well. Just because a decision has bad consequences doesn't mean it is a wrong decision after all. All decisions have consequences.

My decision to reverse my vasectomy and have children late in life had some major consequences. Some people have openly told us it was a very bad decision. But even though I am personally only too aware of some of those consequences in the form of Parkinson's it was not and is not and never will be a BAD decision in my eyes. Sometimes life is just like that. A good decision has some not so pleasant , serious consequences. Like I said earlier, we can ALL learn something every day. Today, I learned that while I might make a different decision than someone else given the same situation it doesn't mean either party made a bad decision. While there may be consequences with any decision those consequences or even the lack of consequences cannot define a decision as good or bad. Hindsight is always 20/20 and only time will tell. Too often we judge another person's decisions ( especially our kids ) when all that is required is that we support them be there if they need us.

I guess I had a really good day today. I learned something.

Shaaky

Could she already be a year old ?

2010-11-04T19:46:00.000-07:00

Referring to my youngest, Cecilia that is....She will be one year old on 7 November. Hard to believe but very encouraging. When Rielly-Anne was born ( she will be 4 on 30 November) I had just been diagnosed with PD. I was new to all that goes along with PD and frankly scared. I remember asking my wife if I would see her turn five. Of course she said I would...
There was no thought of Cecilia at that time. But here it is a year later....

Oh, we have taken a some hits for those two little decisions. Family and friends alike are divided on the wisdom of a fifty something Daddy with PD. To some it was irresponsible and foolish. Others cheer us on, happy for us and glad we are not allowing PD to determine or dampen our entire lives. In the end though, it was our decision and I really cannot find anything that would stop me from making the same choices if I had to go back and do it again. A lot of that has to do with the woman I married.

This week, I took Rielly-Anne to pre-school pizzazz at the public library. It is a little 30 minute class where the kids sing, do crafts and have stories read to them. There were probably 12 or 15 little ones there. I was the only Daddy though....
As I listened to the mom's chatter about homeschooling, interacting with each other I couldn't help think about how many kids there are out there in our area and only 12 or 15 here ? Those women are active in raising their kids. They are doing something special bringing them to these kinds of things. Now I have always appreciated how Mary raises our kids. She is a natural mother. But this day I began to realize just how committed she is to giving our kids a special childhood and wonderful memories and experiences. And somehow, she has dragged me into this....THANK GOD !

I have a very special and close bond with each of the girls that only comes from being actively involved with them from an early age. A few weeks ago I really paid a price to be involved. Rielly-Anne and I have been talking about camping out in a tent in the backyard for over a year. We finally did it. It was only 50 degrees that night and the ground was like a brick on my old body. She lasted until 2 AM which was way longer than I figured and I was happy to crawl in bed but the point is, we made a very special memory that night that she wil never forget.

I plan on making a lot more memories with both of them. Soon Cecilia will be able to talk. That is when Daddy gets really excited because I can communicate ! Already, she gets her point across and she promises to be a real handful, yet sensitive where Rielly-Anne is brash and full of energy and life.

There are lots of things going in this household these days. Changes. Big Ones. Life altering decisions on selling the house, where we will move to next, Mary's daycare business, my car building hobby...and all of that can be scary and stressful and hard but through it all there is one constant. Our family.

My wife and our kids are what matter most to me every single day and by our kids I am including our two boys from previous marriages. They play a very important role in all of this. In any case, it's late, and I have some snuggling to do with my little Cecilia who is waiting upstairs to roll over and cozy up between me and mommy. She doesn't know I am old. She knows nothing of PD. All she knows is that I am Daddy and she likes the hats I wear.
We will make memories my little precious. Lots and lots of them. And when you are grown you will remember me whispering in your ear every night...."Daddy loves Cecilia"
Good night
Shaaky

SLIP SLIDING AWAY

2010-09-05T09:35:00.000-07:00

Words and Music by Paul Simon and Art Garfunkel - Story by Keith

Younger readers won't really get this. They won't know the song or the artist and they won't be able to relate to the aging process or the effects of PD...

I have always liked their music. This song title is exactly how it feels to have PD or have a loved one with PD. The disease moves slowly in most people including me fortunately. Barely perceptible changes that many people miss unless they go for long periods of time without seeing you, then it's more noticeable. Strangers are more likely to notice than others or maybe they are just more open about asking what is wrong ....

The physical changes and challenges are more easily recognized. No point in rehashing those since most of you who read this are all to familiar with them ....

For some time now Mary has been telling me that she has noticed other changes. Things like memory issues or a lack of concentration, attention span , etc. I would just raise my eyebrows in skepticism and tell her how wrong she was, everything is fine, situation normal. I refused to see that there is a mental aspect to this disease let alone admit that I had been affected by it.

Today that all changed. A simple trip to the grocery store forced me to see and begin the process of accepting how PD might be affecting my mind as well as my body. Don't get all bent on me, I am not going soft or silly. But I have to admit that I am struggling with focus and concentration issues which translates into memory issues.

The purpose of my trip to the store was mainly to pick up a birthday card for my son who turns 27 today. I also needed a pack of smokes, a side dish to take to the cookout later today and some canned sodas. As I wandered the store ( a new Kroger, can''t find shit in there yet ) I could not keep it in my head about wanting pasta salad for a side dish , it just wouldn't stay planted. I finally just grabbed some baked beans. Of course I had to have some donuts, some shrimp jambalya and some cookies, but the damn pasta salad wandered in and out of my mind ten times in 20 minutes.

Right after checking out I remembered that I should have gotten a pack of smokes but I decided to stop and get gas and get them there. After loading my bags in the car it hit me that I completely forgot the birthday card. You might ask ...why is this such a big deal ? You would have to be in my head to understand....

I have been living in my head for nearly 55 years now and today I finally recognized what Mary had been seeing for a while. A pattern. I didn't just forget. There is an ADD ( attention deficit disorder) type quality of "fog" that I now operate in ...my mind is slowing down much like my body. And now that I know it, it's both sad and also very scary.

How long ? That is the question everyone with any disease wants answered. How long before "X" happens, whatever your "X" is...
Will I have dementia as many with PD do ? Will I become hateful and ugly with the people I love ? Will I even know them ?

As if the physical part of this disease weren't enough, now I have admit that there is a whole other "thing" to worry about. I always felt that my mind was as sharp as ever and for the most part, it is. But, like everything else....it too is slip sliding away. As the song goes..." the nearer your destination the more you slip sliding away" - Well, thankfully I am quite aways from my destination. It's still a long way away. But I am pretty pissed that I am on the way so to speak...

The last verse of the song is a pretty good summary:

Whoah only God knows, God makes his plan
The information's unavailable to the mortal man
We're workin our jobs, collect our pay
Believe we're glidin down the hiway, when in fact we're slip sliding away

Don't wait up on me, I won't be "home" for a while yet...........

LETTING GO..........AND A LESSON LEARNED.

2010-07-06T19:02:00.000-07:00

In the overall scheme of life most people will find this trivial at best and that is OK. A few of you will understand and that will be enough.
I have had a love affair going on the side. A long term thing actually. It got started when I was only 16 years old. My first car was a 1969 Camaro. Since that first one there have been two more. I still remember what I paid for the first one, $2121.21. My dad cosigned a loan for me and I paid for it myself by working part time after school. Three years later at 19 I was about to be married and it had gotten pretty ragged. Seems I couldn't give it away. Finally had an offer of $700 and my Dad said if I was going to sell it that cheap he would give me that for it. So he did. Three months later he sold it for $1200. Kept the profit too. It was a good lesson.

The next one was really nice. It had the hide away headlight option and a Baldwin/Motion paint job. I always hated the paint job and after a while I sold that one too.

But I never got over wanting one. Finally, years later I found one painted with the Z-28 paint option and bought it for $1800. I changed a few things , not much and soon it was my pride and joy. I loved that car. But it became an issue. My wife at the time convinced the preacher at church that I worshipped this car. I didn't. However, I did like to drive it on the weekends and cruise in it on Wards Road, the local hang out for car guys. This was along about the time the prices on these cars started skyrocketing. After many bitter fights and a visit or two from the preacher I was finally coerced into selling it for $3600. Doubled my money, not bad. That was 25 years ago and it is STILL an open wound to me. Today that car would be worth $15,000 !

For 20 odd years I dreamed, I wished and I whined wanting one day to own another 1969 Camaro. I vowed if I could ever afford one again, it would never be sold.

Then about 2 years ago a guy offered to trade me a 1969 Camaro body for my Pro Street race truck. The floor was rusted out of it. The car was rough by anyone's standards. But I traded and got some cash to boot. And so it began again. My last big car build. My dream car. What happened you ask ?

Parkinsons happened, a bad economy happened, old age maybe. My wonderful wife never blinked an eye and supported me all the way. Slowly I built on the car. Welding in new floor pans. Gathering parts when money permitted. Over a period of 2-3 years I had most everything I needed to finish it. But each time money would get tight I knew what was sitting in the shop would keep the bills paid. First one part, then another would get sold. After a while it became harder to make progress. Physically I just can't do what I used to do. For the last year no progress and a lot of lost sleep agonizing over selling it or letting it sit in hopes of one day.....some day.....

Recently I realized that a lot of my stress in life is self induced, like most people probably. Two projects in the shop, bills to be paid, declining energy levels, no time , no money. Something else came into focus too. No matter how much I would enjoy finishing this car it will never be the same. Try as I might, I cannot roll the hands of time back to recapture that point in time I lost so long ago. And so I got serious about selling it. A couple of deals locally fell thru pretty quick. But the feeling of almost having it sold , the relief knowing I wouldn't have it hanging over my head , that told me it was the right decision.

It went on Craigs List tonight in three cities. 30 minutes later a gentleman from NC told me he would arrive tomorrow night on a roll back with cash in hand. He will come and when he leaves the car will leave with him. Only this time, there is no open wound , only a little sadness that five minutes with my wife and two little girls will take care of on any given day.

Of course, I reserved the right ahead of time to buy another car one day when times are better and that wonderful woman I am married to said " of course babe". I don't know if I will ever own another 69 Camaro or not. It doesn't matter like it once did. And for that I am thankful. It is good to know that what matters the most isn't in the shop, it's in the house. And that lesson has been a long one to learn.

Shaaky

SOMETHING ELSE

2010-06-19T04:10:00.000-07:00

Tomorrow on June 20 Mary and I will celebrate six years of marriage. By some standards, that isn't such a long time, no world record or milestone....
However, it has been the best six years I have ever had. I think THAT is important and unique. The divorce rate for newly married first timers is about 60% now. That is 60% won't make it. Astonishing. I can't tell you what the rate is for folks that have been married once or twice before but it must be about a 70-80% or higher failure rate. The odds are against us. No matter, Mary and I defy odds all the time. We laugh about it.
So is there a secret or a trick to staying happy ? Not really. Common Sense, manners, mutual respect, a sense of humor. Things your parents likely tried to teach you.
In any case I don't want to blog about how to stay married or why people today are so unhappy . Those are all good topics but my main point is very simple.
Happy Anniversary to the most wonderful wife and mother I have ever known ! You make me happy, you make me laugh, you have given me two of the most precious daughters and together we are figuring out our journey as we go along. I wouldn't want to be married to ANYONE else EVER again and I hope we are able to have many, many years together enjoying each other and our children. Thanks for these six years and I am looking forward to the next six !

I MISS ME.......

2010-05-21T03:37:00.000-07:00

This is about as close as you will ever see me get to wallowing in self pity. Sure, we all have days where we feel a little sorry for ourselves. Some people have self pity down to an art form though and for those poor souls I feel sorry.

If you follow this blog you know that I am trying to live my life without letting PD run the show so to speak. This post has to start closer to the beginning though, before I took control of my life back from the disease.

About the time I was diagnosed we found out we were having our daughter, Rielly-Anne who arrived five months later. During the time between my diagnosis and her birth I spent a great deal of time wondering if I would even live to see her turn five years old, if I would ever be able to take a walk with her or see her grow up. There was so much I didn't know at the time even though I had been exposed to PD by my oldest brother who had been diagnosed with PD+MSA several years before. Out of ignorance about how PD would really affect me in my day to day life I was left to wonder.....and we always tend to think the worst.

Almost four years later, I now know how PD will affect me day to day and I also know it is an exercise in futility to sit around and try to figure out the future. I have learned that I don't have to lay down and roll over and allow myself to be paralyzed by fear of the unknown or even the known. We have made decisions that are surely seen as controversial. We had a second daughter. I am building another race car. Almost as if there was no PD......

But there is PD and there are times when you just can't stop a feeling or an emotion from taking control.

My step son, Joe has taught himself to play guitar over the last year or so. When he first showed an interest I showed him a few chords and figured he would lose interest in a month or two. When his interest held and he started showing an exceptional ability to play I gave him my old accoustic to guitar to go with his electric. The other day as I walked by his room I heard him playing and just stood quietly listening as he skillfully played first one song and then another and I don't mean chords .....this was lead guitar stuff that I never could have played on my best day pre PD.

As I listened I found myself in self pity, wishing I could still play a little guitar now and then. And from there my mind wandered to other things I wished I could do like sit quietly for more than a few minutes without my legs cramping and jumping and forcing me to get up and move around...
get thru a day without being completely worn out and wanting a nap....play with my daughters the way my oldest, Bryan is able to play instead of being limited by old joints, fatigue, etc.

Tonight, almost a month after starting this post, I was looking thru pictures of me on my facebook page and I ran across a picture of me holding Rielly-Anne right after she was born about three and a half years ago. I didn't take a long look for me to realize that a lot has changed in the four years since I was diagnosed. A lot. And yet, to me, it seems as if I am no worse , at least that is what I tell people when they ask me about it. I tell myself that too. But pictures don't lie. They leave little room for "putting up a front" or " having a positive outlook". There is no denying that PD is slowly, inevitably changing me and in my own stubborn way I am in denial and refuse to give in. I am sticking with the plan to live my life the way I want for as long as I can. I no longer wonder if I will see Rielly-Anne reach 5 years old. I probably will. Instead I focus on making all the time I get with my wife and kids into memories or in some cases life lessons, that will be remembered. Like Sunday mornings- Rielly-Anne and I now have a tradition of going to pick out a dozen fresh donuts, in "your Shaaky truck Daddy", she loves to go anywhere with me in my Shaaky truck.

Lately, Mary has been telling me I am having a mid life crisis. Race cars, hot rods, now I want a little 10 foot tunnel hull race boat. We agreed not to call it a crisis though, mid life issues...
My label is more like a bucket list. There is a sense of urgency now that wasn't always there...

And in the midst of all this, sometimes, like when I was listening to Joe play my old acoustic guitar, I miss the me I used to be. For a few minutes, I plummet into a little spat of self pity. Never for long though because it would take up too much precious time , wasted in thoughts of what might be instead of what is and what can be. I think it is like a quick glance in the rearview mirror, you can't drive the car if you stay focused on the rearview mirror, you have to be looking over the hood, anticipating, reacting, adjusting, correcting. Funny how it comes back to driving something isn't it ? :-)

So, I will drive on and I will enjoy the drive. And when I can no longer drive, I will ride. And whenever the last ride comes, there will be no regrets. Sure, I miss the me I used to be sometimes. But I love the life Mary and I have with our kids and nothing will keep me from living it as fully as I can while I can. Stubborn ? Yep. Determined ? Yep. Single minded ? Yep. Driven ? Yep.
Happy ? Yep. Tremendously.

INSPIRATION

2010-04-11T04:16:00.000-07:00

By the time you get to be my age (almost 55 and so ready to eat from the seniors menu) one often thinks they have seen it all. Wise folks know however, that you can learn something new every day. Not saying I am wise but I do keep an open mind....

As we go through life there are ups and downs, bumps in the road, really good times and sometimes really bad times. As human beings we try to maintain our balance and not get all crossed up along the way. Some struggle with disease, disaster, tragedy while others may seem to lead a charmed life with little to weigh them down along the way. Eventually, we all struggle with something though. Eventually, "there will come a day" ...some of you may recognize that phrase. You know who you are. The very Reverend Pethel drove that point home many times on Friday. He was preaching at my nephew Chris' funeral and as only a fundamental Baptist preacher can, he was calling all who would listen to accept Jesus. But that isn't exactly what I am about here, he did a fine job and I enjoyed listening to him very much. I couldn't begin to be as good a speaker.

Instead, I want to share what I think is perhaps Chris' greatest accomplishment because it is very close to some of the things that I have nagged anyone who would listen about for the last three years. You can go back in previous posts on this blog if you want to catch up or you can click the X at the top if you just don't care to be nagged , LOL .

For those of you who follow my blog but are not family, Chris was my nephew and he was killed in a tragic car accident on Easter Monday. He left a wife and three young children behind and from the looks of it , an entire community of people who thought the world of him.

When I returned home from NC after the funeral my wife put in one of her favorite movies. Some of you may know it...."As good as it gets" starring Jack Nicholson, Greg Kinnear, Helen Hunt , etc. It is the story of an obsessive compulsive guy struggling thru life and at one point in the movie as he is walking thru his analysts office waiting room which is full of people, he asks them....What if this is as good as it gets ? Rather pessimistic , but a very interesting question when you think about it.

Chris got it right. His life was truly as good as it gets. Why ? What was his secret ? As I spent Thursday and Friday with his family, friends and community I saw a man who had come to realize at least two things that some people never learn and others like me take a lifetime to learn and put into practice.

The first thing is that Chris knew that life is only as good as YOU make it. He was a glass half full kind of person. He would never have asked, is this as good as it gets ? He would be making it good, then better and better. Rick Pethel told me a story about Chris and his driving habits while I was at the family night. He said when Chris would be driving his head would be constantly moving, scanning, he didn't want to miss anything , anytime, anywhere. That was kind of ironic because I am like that too. And you know what ? Chris didn't miss much. He was PRESENT AND ACCOUNTED FOR in his kids lives, his wonderful wife Amber's life, her family's life, his community.....he lived every day as fully involved as he could. He made time for everything and everybody. He worked hard at any job he undertook but he worked hardest at living every minute of every day and having as much fun as he could have in every single thing he did. He made everyone laugh and smile. He was willing to look silly in order to get that smile. He made life as good as it gets......so good in fact that most people , even without knowing him, could just look at the pictures and stories at the funeral home and you just knew this guy had the secret of happiness locked down.

So how did he accomplish this feat of happiness ? I guess this is where I get on my soapbox and nag some more.....My favorite book, Tuesday's with Morrie, written by Mitch Albom.
In order to live life to your fullest, happiest capacity you must first be able to accept death. You must accept that death is a part of life and understand that you never know when it will be your turn. Once you can do that, you are then free to live a happier , fuller life. To put it another way and to reiterate....There will come a day. See? I told you that preacher was smart...

That day may not be the day you die, it may be the day you get a diagnosis like Parkinsons, or Mantle Cell Lymphoma, or any other bad news that just knocks you over. There are lots of bad days where the writing is on the wall.....the wake up call , the knock on the door to your brain and you should get the message. Whatever your struggle is, you can't go back to tomorrow and I don't think Chris EVER looked backward, only forward to the next exciting minute of his life. He was looking forward, all the while packing his bags.

He packed and packed and packed some more. None of us know how long the journey will be but Chris knew to keep packing as long as he could ....and you know what he was packing ?
He was packing life, love, memories, good times, silly times, fun times, smiles, hugs, kisses, blessings. He lived every day all he could so that when that day came, he would be ready. His bags would be packed as full as he could get them. In fact, the angels likely had to charge extra for all those bags because you can't take but two plus one carry on without paying extra and it was obvious that Chris had been packing for many years. ( Hope he grins when he reads this ).

Ultimately, Rev. Pethel and I are after the same thing. You have to accept death as a part of life before you can live. Chris had it right, I got it right. So what did I learn different from Chris ?

I got the first two things covered. It's that third thing that Chris did so well that hit home to me this week.

Pack your bags. Pack them full, then get another bag and pack that one full too. Work harder at making the time for "packing" i.e spending time with my kids , my wife, my family. Pack like you were leaving and never coming back. Because there will come a day........when you won't come back. And your bags better be packed and sitting by the door.

COURAGE - Part II

2010-02-03T16:33:00.000-08:00

I got a lot of feedback from my last post about courage.....I like feedback. It causes me to keep thinking , sometimes along different lines...

The last couple of days my thoughts have turned towards the people who enable others to have courage. You might call these people encouragers......they empower people like me, my brother Eddie, my friend Dan ( who also has PD+MSA), my friend Ben, and my brother Larry...they empower us to have that courage, that hope, that spirit.

Don't get me wrong, a person has to be wired a certain way to begin with to have courage. There are lots of people , who in the face of illness or adversity just give up. They show no sign of hope, courage, spirit- zip, nada, none. However, as wonderful, courageous, spirited, determined as I made my oldest brother out to be in my last post, I now want to shine the light in another direction.

These people - I referred to earlier as "encouragers" are every day people who have risen or are rising to a challenge. A challenge which sometimes sweeps away everything in it's path with no regard for anything or anyone. Who are these people ?

CAREGIVERS

One simple word that encompasses a world of sacrifice, love , victories, losses, pain, and ultimately usually grief.

Caregivers usually find themselves thrust into situations they did not plan for such as having to go from home maker to bread winner or vice versa in the case of male cargivers caring for a disabled spouse or elderly parent, or disabled child. They have to learn new skills like giving injections, dealing with bed sores, keeping catheters clean, learning how to use a feeding tube or cope with physical demands like moving a person from bed to chair or car.

Their resources, life savings , homes can dry up and blow away like dust in the wind in the face of mounting medical costs and limited or no income. Other family members may disagree with decisions or actions by the caregiver without thinking about how their judgements might affect the caregiver or the patient.

And on top of all the obstacles, decisions, hardships and crisis situations the caregiver must deal with daily they almost always also sit and watch a loved one suffer, deteriorate , and die. No matter how much they do, how hard they try, how many prayers are said or tears are shed.....in the end the caregiver is left to wonder .....Did I do all I could ? What if I had done this....or that....Why did this happen to me ? To us ? Why can't I fix this ?

One caregiver I know commented that she was in awe of the way her husband handled himself in dealing with PD. Another caregiver has shared many painful stories about how they just can't cope. There is no paycheck. Friends and Family rarely understand the sacrifices that the caregiver may have to make in order to get the job done. I recently saw a TV documentary about parents caring for their children who were wounded in Iraq or Afghanistan and came home requiring constant care and assistance. The government usually provides a pension for that person, but who pays the caregiver who has to give up their life, their job , sometimes the rest of their family ?

There is another word for Caregivers that quite possibly suits them better.

HEROES

Yes, they are truly heroes. In every sense of the word.

My wonderful wife recently admitted that in a dark corner of her mind she sometimes wonders if she is up to the challenge of what is to come. I am sure every caregiver wonders about that at some point. Most just keep on getting up literally and figuratively for whatever challenge the next day brings.

So, the next time you meet someone who is disabled or has some type of disease that is going to affect them the rest of their life....try to see the big picture. They may have courage beyond compare , no doubt , just like both my brothers , my friends Dan and Ben...but ultimately their is someone standing close beside them, ready to help, always there , looking for the next challenge, enduring the pain of watching something happen to someone they love that is out of their control. Dealing with the world, family members, doctors, medicare, insurance companies and anyone or anything else that comes their way.

These are the forgotten heroes. These are OUR heroes. We will leave them behind to pick up the pieces, rebuild and recover if they can. When you see one...be sure to let them know that you see what they are doing and that it is important and appreciated. Be quick to praise and slow to judge. Tell them what a great job they are doing. They need that in order to do what they must do.

To all my blog friend caregivers, you know who you are, I appreciate you. You're doing wonderful , great things. You are all heroes.....

Shaaky

COURAGE

2010-01-29T19:41:00.000-08:00

The other day I was visiting my older brother and his wife. Sitting on the sofa talking about whatever......very pleasant. Although none of us siblings stay in touch as much as we should, as we have gotten older, we have all realized that there is a time stamp if you will...and we now talk more than we ever used to.

Although all four of us boys are different, there are some things that we have ALL had an interest in at some point in time. Cars in general springs to mind....one of us has had three or four Starsky and Hutch Torino replicas, one of us fooled around with a Chevelle and a pretty cool Torino back in the day. I am the die hard lifelong drag race fanatic and my oldest brother with whom I was visiting shares my passion for NHRA drag racing.

I remember once when I was racing a 67 Camaro there was some welding to be done and I had never done any welding....so he gave it a try and got the job done- without using a welding helmet. Burned his eyes pretty good, spent days with raw potato slices over his eyes trying to fix his eyes. The old days.....

I learned a lot from him....how to make a square braid keychain.....how to rot a muffler from the inside so that it sounds cool without buying a performance muffler (give us a break - it was the 60's).....how to body surf and live to tell about it.....Of course he became a Dad first being the oldest and he was a great Dad as his kids grew up and I just watched and learned....

Being the oldest, I guess I always looked up to him. He was cool. Very popular with lots of friends and as I grew up I turned out a lot like him as far as career choices, personality, etc. We even worked for the same company for a few years. At one point, he ran the starting line and I did tech inspections and ran the staging lanes at the local drag strip on the weekends. Remember the jet cars ? He would hit the start button on the christmas tree, turn his back and go into a fetal crouch while two jet cars kicked the afterburners and roared off the starting line inches away on either side ! Courage !

Yep, I learned much more than what it is written here and today....I am still learning and he is still teaching. We are more alike than we ever dreamed....You see, he has Parkinsons too....except with a cruel twist. On top of the PD there is multiple system atrophy. He really can't speak now...or walk...or eat (feeding tube) ...we communicate with a letter board where spells out words and sentences by pointing. We still talk drag racing and discuss whats going on in the NHRA and I keep him posted on my progress with my 69 Camaro.

As I sat there with he and his wife he still has that light in his eyes and a shit eatin grin on his face when he is amused by the conversation around him. While I was there he decided to show me the physical therapy exercises he does to try and slow the muscle deterioration. As he slowly raised his legs with the ankle weights strapped on or pulled against the rubber stretch cords while his wife held the other end and counted his repititions I was struck by the courage and determination it must take from him each day. And yet, he still has a grin and a thumbs up for me whenever I stop in to visit.

This people, is real courage. I hope he knows how much I learned from him over the years and how much I am still learning even now. As I said we are a lot alike. I don't think there is anyone else who can teach me what you are teaching me now....so keep teaching. And I will keep trying to learn and hope that I can be like you and have that same spirit and courage !

Shaaky

A Glimpse into the mind.....

2010-01-20T19:45:00.000-08:00

I recently reconnected with an old friend of mine via Facebook. Joel and I worked together about 8 or 9 years ago. We were both "bouncers" at one of the largest night clubs on the east coast. Joel was the head bouncer. Young, buff, cocky in a quiet confident way and experienced. Me ? Older, not buff, the inexperienced new guy. Not confident in any way about being a bouncer. I really didn't know what I was doing or what I was getting myself into....
I only knew -
1) I was newly single
2) I was bored and lonely
3) I wanted to do something fun and exciting instead moping around at home

And so it began.
White collar sales manager by day.....Patrick Swayze in Road House at night. Well, maybe not quite that bad but sometimes it got pretty wild. My.....the stories I could tell ...back to my point.

When Joel and I chatted on Facebook we were remembering our adventures as bouncers and as the chat continued, he told me that I was "bad assed" back in the day. Don't get me wrong, he wasn't saying I was mean, tough, or violent. He meant that I had "skills" as the teenagers like to say these days. When I humbly objected that I wasn't that good Joel made it clear that his compliment was sincere. Needless to say it was flattering and made me feel very good.

That exchange on Facebook started me thinking about confidence. How we gain it and also how we lose it.

When I was a young man I gained confidence in several areas. Working on cars, especially hot rods, driving race cars, outdoor skills as a boy scout and later competitive pistol shooting and building custom handguns. In the business world I developed my sales and project management skills. I found that if I put my mind to it and worked or practiced long enough I developed the skills which led to confidence in that area. I was and continue to be a very competitive person.
Confidence results when we work and practice at something until we know we are good at it. Right ?

One area that I lacked confidence was in physical confrontation. I wasn't a fighter. So, when I signed on as a bouncer it was with fear and anxiety. However, in Joel I had a great teacher and apparently I was a good student. So how does this relate to Parkinsons ?

One of the first things I noticed after I was diagnosed three years ago was a keen lack of confidence. The reason this is important is simple. Most people can see the physical affects PD has on a person very easily. But few can "see" the emotional affects. My wife easily understands my physical limitations but she struggles at times to even know about the battles within my mind much less how those battles might affect me. This is a glimpse into the mind of a PD patient on a topic that I feel sure we all deal with....erosion of confidence.

When a PD patient is under stress and the adrenlin kicks in most of the time the result is tremors or shaking. Physically uncomfortable, very visible, but what about the mental cost?
Well, I can only relate my own experience.

For me, in the beginning, I started to wonder how people viewed my shaking. If I had to "write up" an employee or even terminate one, would they view my tremors as weakness ? Would they think I was intimadated ? What about my wife ? Every couple disagrees now and then. If we were nagging at each other and you know you are going to shake....will she think I am about to lose my temper and attack her ? Or would she think I was about to have a heart attack ? You wonder. And when you wonder ...you begin to doubt....can I still manage people effectively ?
This issue pops up all the time. A simple battery installation. Obviously my skill with hand tools is no longer what it used to be. Do I do it anyway and hope the customer will understand the extra time it will take me ? Do I delegate it to one of my employees ? Will that employee view me as a lazy boss ? Resent me ? Think maybe I am no longer able to do my job ? You wonder . You begin to doubt. You start to lose the edge, the confidence.

Driving a car is more of a challenge now than a passion. The other night I ran up against a curb by accident. Probably wouldn't have happened four years ago. My wife said nothing. But I know what she was thinking and it hurt and made me angry all at the same time. Again, you wonder...how long before I shouldn't drive ? And you doubt. And day by day, little by little your confidence slips away without anyone but you seeing or knowing. It drives you ...insane at times. And other times it drives you to push harder, like that chain link fence around my yard that Mary said I couldn't put up. Did I ? Hell yes with a little help I did it my damn self. Nearly killed me but I did it. In those moments, when you triumph in spite of the disease, you swell with pride and confidence, but only briefly. Those moments are fewer and fewer now. And the wonder, doubt and erosion of confidence (which leads to self worth issues) creep in more and more.

Mary claims my only approach to fighting my PD is to look it in the face and say " I won't let this stop me from living my life " and mostly that has been the case. And that it is very important to me. She can plainly see the physical battles fought daily.

However, only I am privy to the many, many conversations with myself about wonder, doubt and confidence. Only I know how many times doubt or lack of confidence stops me or slows me every single day.

On the bright side, after three years I have learned that I can indeed still do most anything but slower and more cautious now. Mary has been wonderful, encouraging me most of the time even as I am sure she questions in her own mind.
Bryan, my grown son is a constant source of encouragement and help. He reminds me that I am Keith Lewis and I can do anything I set my mind to.
And Joel. Who reminded me that I am bad assed, or was....I had skills.
Some skills are still there , others , not so much. You won't see me throwing anyone out the door of the bar....
In closing, I want to share some things I learned as a bouncer:

1) Vomit is the most slippery substance in the universe. Mobil 1 synthetic oil most certainly must be made from recycled puke.
2) I hate stupid drunks, have no use for them.
3) A full nelson hold is of no use on anyone taller than you are. It will land you in the floor.
4)Bored bouncers will stoop to almost anything to instigate a small riot so we can have fun too.
5) There is no worse sound than someone's fist smashing someone's face. Over and over.
6) Drunks can find confidence in a bottle. It's not the real thing. But it's often fun to watch.
7) Break Stuff recorded by Limp Biskit will nearly always guarantee some bouncer fun !
8) Two women fighting are harder to break up and throw out than ANY four guys.
9) You can get the phone numbers of lots of women , they like bouncers.
10) Watch out for the quiet ones. The loud talkers are just that ....loud talkers.

Hope you enjoyed this one and maybe it helps someone underestand the battles of the mind......

Shaaky

INEVITABLITY

2010-01-09T19:03:00.000-08:00

In previous posts I have spent some time exploring the certainty of dying and acceptance of that forgone conclusion. The subject is explained best in Mitch Albom's book, Tuesdays with Morrie and oddly accepting your own death actually frees you to live the rest of your days with a much better outlook on life in general. Don't worry, I'm not going to get on that soap box again. I bring this up as an introduction to another self realization....

If you follow my wife's blog, Life with Shaky, you may know that over the last year we have sturggled with a decision about keeping or selling our home. The initial question arose because Mary felt we should be moving toward planning for the time when I cannot work or take care of the day to day duties of maintaining a home due to PD. A scuffle ensued so to speak....me standing firmly against acceptance of the thought of selling our home which would mean me losing my shop where I love to play with hot rods. After all, I'm not dead yet, I am still a successful general manager for an auto parts retailer, I am in the middle of building a pro street 1969 Camaro.....and so it goes.

Mary on the other hand was likely seeing things more clearly than I would like to admit but in the end I prevailed. More like I won the battle only to lose the war.

Now, 12-18 months later the subject is back on the table again albeit for other reasons.

Things change. Always there is change and just when you think you have most everything under control you wake up one day and the things you were prepared to deal with are not the same things that you actually have to deal with because things changed. Sometimes change happens slowly , other times almost over night.

In the last 18 months.....Who Knew?

- that Mary and I would agree to have one more child which would mean we would lose her income for some time.

- that the company I work for would change the bonus structure essentially eliminating about $5000 from my income.

- the economy would tank in the worst way since the depression resulting in catastrophic business failures, bank bailouts, run away inflation . plummeting home values, and on and on...

And one day you wake up and realize that it's true what they say....the only constant is death and taxes so to speak. And taxes is where our story springs from....
The other day I was doing some pre work on our tax return and Mary and I were talking about when she was a single mom how she could claim the earned income credit which is a government credit that was introduced in the mid 70's to encourage people to work even if the only job they could get did not provide enough income for their needs. At the end of the year , to reward you for not sitting on your butt and living on welfare and food stamps, the government recognized that you hold a job albeit one that won't pay all the bills, and so they give you a big tax credit to offset your shortfall so to speak.
I used to be so envious of that whopped tax refund she would get....
Anyway, on a whim, I checked to see if we now qualified for the EIC and WE DID ....
With my reduced salary due to bonus structure and a freeze on merit raises for two years and little Cecila now in the picture, it is now official, even the US government recognizes that WE are in tough times.
Who Knew ?
Well, at least I am working , at a good job with good benefits. Many people aren't. And the fact that we are doing as well as we are ? Well, not long ago, I was talking to a friend about his business and I asked him to what did he attribute the continued growth of his business to in these trying economic times ? He said two words which really have stuck with me....
God's Blessing.
And if you ask me, that about says it for Mary and I too.
Who knew ? I asked earlier. Certainly , we did not anticipate all I outlined above.
But, how can I explain what drove us over the last five years to pay off nearly every single credit debt we had between us ? We started with Mary's car, then mine, and any car since then has been paid for up front. Then we knocked out all but one small credit card, and last year a whopper bank line of credit. If we hadn't done all those things we would really be in a pickle now let me tell you. Well, we're still in a pickle but it could be so much worse :-)

The fact that everything is as it is right now is two words....
God's Blessing.
So, add one more constant to the list.
Death
Taxes
GOD's Blessing !

Inevitability.
Things will change it is inevitable. How you deal with it , view it, react to it, now that is a choice each of us has to make on our own.
And no matter your choice it is all too often life defining.
In the midst of all life throws at us each day, don't forget God's Blessing.

SEX, MONEY,KIDS

2009-12-12T19:52:00.000-08:00

Catchy title huh ? Thought it might get your attention.....

It IS the subject of this post actually. The three things couples argue about most generally speaking. Often leading to divorce I might add....been there , done that.

But I digress....

These three subjects, like it or not, generate plenty of arguments amongst couples and for good reason. All three tend to generate strong feelings in any given human being. Another generaliztion would be that it is often not enough of the first two , sometimes helped along by too many of the third one ! We have all likely been there at one time or another. However, for PWP's these three little gems are often even trickier to navigate. The reason I say this is simple. Side effects.

That's right, side effects from one or more of the drugs used to treat PD can escalate these issues into the stratosphere and beyond. Mirapex , a dopamine agonist is especially interesting. You don't even have to read about the side effects, the TV commercials for this drug plainly state that Mirapex has been known to cause uncontrollable sexual urges or gambling urges. If you read about Mirepex online, you will find that some people using this drug have gambled away fortunes or spent small fortunes on sex or sexually related material. Kind of incredible and sensational but proven true.

When I was first diagnosed three years ago the only drug I took was Mirapex. A year later, Levodopa was added and by this year the dosage of both had been increased several times. Let me stop here to say that I considered Mirapex a wonder drug when it comes to sleeping at night. Without it, my legs ache, jerk, spasm, my toes curl and in general sleep is impossible and that is not an exagerration, I have gone days without sleep once when I could not get my Mirapex refilled on time. However, I am happy to say I have not had to deal with any other of the severe side effects noted above !

Unfortunately, there are lesser side effects, not commonly discussed or as prominent but no less dangerous and these apparently were nearly my undoing. As my dosage was increased, I myself did not notice the small changes occurring in my daily life. But my wife noticed.......

Mirapex causes impulse control issues on any number of levels not just when it comes to sex or money matters. For instance, I might leave going to the store for a pack of smokes and not return for two hours leaving Mary to wonder if I was dead in a ditch , broke down or being abducted by aliens. Or worse....is Keith having an affair ?

Unbeknownst to me, all the while oblivious, Mary was left to wonder where I might be when I disappeared. Maybe I started home from work but decided to stop and see a friend......or three. When my cell phone would ring I would be irritated. There she goes, checking up, nagging me to get on home. I'm a grown man, can't I stop somewhere if I want to ?

After months of this, it got worse. She would call and with obvious irritation say " Just wondering where you are at ?" (long sigh from her end of the phone, obviously pissed). This would set me off instantly. By the time I got home, we would hardly speak until finally it generally erupted into the same old argument....

Her - Where the hell have you been ? You got off at five ! ( It is now 7 ...)

Me - Can't I stop for just a minute or two if I choose ? I am SO tired of you tracking me down ...I feel like you have to know where I am every second !!! ( door slams, I go out to smoke and brood).

Another issue was my lack of patience on just about any level. I could pop a head gasket over the simplest of issues and usually did. If Mary tried to discuss something with me I would jump down her throat and accuse her of trying to start a fight intentionally.

If a thought crossed my mind , it usually came out of my mouth no matter where we might be or who might be around. It was often embarrassing or awkward once my mouth opened and then I would get that look ......and I would say "What ? What'd I do ?

If you are paying attention, you might have put together by now that ALL of these issues in some form or another are IMPULSE CONTROL issues. That's right, the same type of problem noted in the beginning of this post , just not sexual in nature or related to gambling. More subtle perhaps, less sensational, but still dangerous and very irritating. Certainly stress producing and not stress reducing.

Over time, Mary began to solve the puzzle that was my behavior. As usual , she researched, read, pondered, watched and evaluated. When the dosage was increased this last time she was able to identify increases in those impulse control issues. She had suspected the cause for a long time and even tried to talk to me about it many times only to be met with a stone wall from me. After all, I am the one on the meds, wouldn't I notice any side effects? Perhaps.....if they were big enough. The fact is I didn't notice or was unwilling to admit that I saw any change. And I was scared ....how would I sleep without Mirapex ?

Earlier I had switched from Mirapex to Requip during the day because Mirapex also causes sleep attacks. I could be driving no more than an hour trip and have to stop and take a nap along the way or risk falling asleep at the wheel. The switch to requip during the day helped that issue greatly but I was still taking Mirapex at night and even in reduced amounts it affected me.

One day, after another bitter confrontation about being gone longer or stopping multiple times before coming home, Mary made it clear that something had to change. She was at the end of her rope. So I agreed to wean off Mirapex. It wasn't easy. Sleepless, miserable nights wandering the house while everyone else slept. Juggling , playing with dosages on the other meds to find the combination that worked. After about three days, Mary said she could see a difference. I was more patient, more willing to listen with an open mind. A week into it, I started sleeping again and had stopped "wandering off the grid" for hours without warning.
I still don't rest as well as I did with Mirapex but I can get 5 good hours in before my legs get me up.
If there is a moral to this story it is simple. PWP's or others with a disease requiring meds on a daily basis MUST keep an open mind about side effects and above all trust your partner or caregiver when they see a problem. It is much easier for them to see these type of things looking from the outside in than for the patient to see themselves.

Sex, Money and Kids. Sure , we've had those arguments too......but in the end, we both know that nothing is stronger than us together. We are trying to enjoy whatever time God gives us before the bad times come and who can say if or when ? It isn't up to us after all.....

Another time, another subject, until then....

Shaaky

HELLO OLD FRIENDS - AND NEW ONES TOO !

2009-12-08T16:29:00.000-08:00

After almost exactly a year since my last blog entry, it feels good to be back. Lot's to share, plenty to question and hoping people will come back to read.

A high speed cable modem helps things !

A quick update before I consider my next serious post.....

Since Dec. 08....

Mary got pregnant again.

Keith increased his meds.

Mary noticed some changes associated in those increased meds.

Mary insisted Keith stop taking mirapex.

Baby Cecilia Mae is born and baby Rielly-Anne turns 3 !

Keith participates in a clinical study on reaction time and PD Meds.

Somewhere in there is a serious blog post-stay tuned !

Shaaky

DON'T LOOK DOWN !

2008-12-12T17:28:00.000-08:00

OR BACK FOR THAT MATTER.......
As the old saying goes, if you are way up high in a scary place, doing your best to maintain your balance, don't look down. It can only get worse if you look down. Looking back is almost as bad. If I had been looking back last night and seen that car getting ready to crash into my car .....well, lets just say I preferred the surprise over the fear. Car- totaled, Keith - shaken but not stirred.

We live in a scary world these days. Economic crisis, terrorists, war, recession, soaring unemployment, global warming....if you even glance down you could lose your balance. Blink once and down you go. Dealing with PD itself is a great challenge. Dealing with the other things that come with it may be an even greater challenge. Recently, Mary and I have been tossing around some options for our future and decisions have been made or will be made that some will find to be not so poplular while others will completely "get it" and understand.

For instance, we have pretty much decided to sell our home , pay off what little debt is left after the mortgage , then take the equity and pay for a nice mobile home in a quiet park leaving us in the blissful state of debt free. Why ? Because sooner or later I won't be able to work and we would rather plan on that now than have to scramble or risk financial burden on Mary later. It makes perfect sense to some and others think we are mad. When we bought this place neither of us planned to ever leave. Of course we had not planned on PD and we did not plan to have a child either. So our cozy, 2 BR , rustic cottage was perfect. Now, it's cramped, too small, harder for me to maintain and deal with steps...you get the picture. It is a VERY painful decision for both of us but one we need to face squarely.

For me, realizing and accepting that I won't be able to provide the kind of home I want to was hard. Giving up my hot rod garage where my grown son and I have spent countless, wonderful hours sharing a passion for cars will be heart wrenching to put it mildly.

Another polarizing landmark decision was to have another child. Actually , I think what I agreed to was to take no precautions and see what develops. Again, madness to some and inspiring to others. Mary and I got together late in my life and our age difference alone (22 years) marks us as "different". Had we both been young we would have had more than one child so we joke that we may as well continue marching to the beat of our own hearts instead of conforming to some preconceived mold dictated by society at large. At the end of the day, we are choosing to live all we can while we can.

A visit to the neurologist at UVA brought news as well. As I predicted, I am now starting Sinimet. Doc says I will feel better. Also switched from Mirapex to Requip....seem to have more energy but anyone who can tell me what I can expect from going on Sinimet , please leave me a comment....

So, how am I doing overall ?

I'M SHAKIN' A LEG !
And as long as I can do that and look forward , never looking back, I got it knocked baby......

A BLESSING AND A LESSON

2008-11-27T16:09:00.000-08:00

I must admit that I have been reluctant to accept some aspects of PD and even more reluctant to post on this subject.

My wife recently blogged (Life with Shaky) about learning to ask for help when we need it and about the disappointment she feels when family members can see how PD affects us but fail to offer to help. This isn't the first time she has posted on this subject and I feel sure there will be more. This IS the first time I have posted anything on that subject. This was brought on by a not so random act of kindness by one of my neighbors. He owns his own landscaping / lawn care business. Yesterday he pulled his truck into my drive and he and his helper assaulted the tons of leaves in our front yard with back pack leaf blowers and a powerful vacuum hose on his truck. This took about 30-45 minutes. It would have taken me days if it even got done.

He did it because he knows that 2 years ago I landed in the hospital after using my old hand held leaf blower all day and bagging and hauling leaves to the dump. He isn't around me for hours each day, maybe he sees me 15 minutes each week. It's enough for him to know that what was less than an hour out of his day likely saved me days of effort, utter exhaustion and pain. It was a blessing that couldn't be ignored. No one had to explain to my neighbor how PD affects me and no one asked him to help us out. He has seen me deteriorate over the past two years and took action.

Mary gets all out of sorts, especially with her family, because no one seems to SEE just how much PD has affected me. But it really isn't just family, it's the nature of our society. All too often most of us tend to be so wrapped up in our own struggles and lives that we don't take the time to see what anyone else is struggling to overcome. This is why the nursing homes stay in business. Children cannot find the time or love to care for an ailing parent. We are a self centered, self absorbed society that has lost compassion for others, including family. When Mary and I discussed this issue recently I commented that it doesn't bother me that family isn't stepping up to help me more. I understand that to most, on the surface, I am still healthy and go to work every day. They don't really understand yet the effects of the disease and likely won't until I am unable to work.

Unfortunately, my "understanding" equals only my willingness to excuse a lack of caring and compassion on the part of others and you know why ? Because all too often I don't take the time to really "see" other peoples struggles and take action to help. If I get upset at others for this lack of understanding I need only look in the mirror to see a guilty party..........

Another lesson learned thru my battle with PD.

I resolve today to take the time to notice other peoples struggles. To teach my kids to do the same and to ask myself what I can do to help someone else.

Time is NOT on your side

2008-09-27T17:00:00.000-07:00

Contrary to the lyrics by The Rolling Stones, time is NOT on your side. This is a broad statement, vague at best but, as you might have guessed I plan on explaining...in detail....and hopefully it will change the way someone thinks.
As children, we have little to no concept of time. Time is measured by how long a cartoon might last. As teen-agers we can hardly wait until we are another year older so we can drive or go to high school or whatever it is that we live to do...My mom used to tell me not to wish my life away and although I understood her point I could not see how fast time passes really....
In our young adult lives we get busy with life. Working, making a career, a home , a family...and we are so busy that we don't even notice time slipping away until one day when some milestone is reached and the lightbulb that is our inner clock begins to glow faintly. Illuminating only slightly the concept of time moving faster.
Maybe it's your kids graduation. Maybe it's your 30th or 40th birthday or you lose a parent or someone you went to school with. It is then that you can usually hear us saying things like " time seems to go by faster now that we are older" .
But that still isn't the real point I am making.
For those reading who are still basically healthy or just plain young....imagine you have been told you have an incurable, fatal disease. Try to imagine how that might feel. What would you do differently ? How would your priorities change ? Would you modify the way you lived ? Act or behave ? Think ? Relate to others ? Try real hard. Close your eyes and really try to let those feelings into your brain.
I know. It sounds so cliche', so trite , so something......all of us have heard similar stuff. Maybe it was in church when someone asks you if you died tonight are you ready ? That is NOT what I am looking for here. That's your personal issue. No, what I am driving at is more of a complete change in thinking processes.
So, lets get back to it. Have you tried to imagine the feeling ? OK.
Now, everyone has probably heard that country song about hoping one day to get the chance to live like you were dying, or maybe you have read Mitch Alboms book, "Tuesday's with Morrie"
I have referenced it in earlier blogs. I know , running it in the ground, belaboring the point but this is important to me.
The other day, I tried to explain it to my boss and did a poor job. We didn't seem to connect. He thought I meant that all of us should live only in the present, having no goals or dreams or ambitions. That isn't it at all.
I have lots of goals and dreams and ambitions. I want to finish building my 69 Camaro and enjoy it a few years. I want to see my son get married, become a father. I want to win Store Manager of the Quarter or better yet year before I retire. I want to teach my daughter how to pick the right guy. I want to take my wife to NYC.
I believe I will do ALL those things. I think about the future every day. I am not living just for the present.
BUT and this is a big BUT....being diagnosed with Parkinsons ( incurable but not fatal ) caused me to start thinking in terms of my own mortality. Then, my wife bought that book Tuesday's with Morrie. I read it. Everyone should read it. I began to realize that even though ALL of us know we will one day die, few of us live our lives like we understand it. We live thinking tomorrow will ALWAYS come. It doesn't.
Start watching. This past year I have seen a kid my son's age nearly killed by a drunk driver. The son of a high school classmate drop dead with no warning. People around us die all the time and most of us still don't get it.
Remember I asked you to imagine if you were stricken with an incurable , fatal disease ?
Guess what ? You have been. That's right, YOU. It's called LIFE.
An old preacher friend of mine explained it this way. The moment we are born we begin to die. Dying is a natural part of living. Again, don't get me wrong , I am not out trying to "save" you, that's your issue to resolve. Maybe more important, this isn't doom and gloom either. This is about life and how you choose to live it.
If you can accept that being born is an automatic death sentence, that you really are one day going to pass on, that tomorrow is never promised ...and every day ask yourself what you can do today to make a difference, then you WILL live a richer, fuller life.
Make your plans, set your goals, live your dreams. Only you must remember that time is not on your side or at least it may not be.
So, love your family. Take time , it's a quality of life thing really. That's all. Decide what is really important each hour of each day. You will be happier, less stressed and those around you will feel and see the change.
Time is not on your side. What will you do different today ?

OLD FRIENDS / NEW FRIENDS

2008-08-06T19:00:00.000-07:00

Recently, an old friend and former co-worker crossed paths with me. She was diagnosed with MS a few years ago, well before my PD diagnosis. She is doing so well , it was really encouraging to see her. We share many of the same challenges and struggles. I am hoping we can stay in touch but you know how hard that is to do.....Anyway, hats off to you girl ! I was inspired by your courage, positive outlook and shared struggles.
Under the new friend category- I attended a support group for Young Onset PD folks and am very happy to have found them. These folks are more willing to discuss their experiences and real life challenges than the older retired type support group I had been attending. Quite a bunch of characters as well I might add ! Am looking forward to getting to know them better as time goes on....
Old friend - Dan (PD PLUS ME) stopped in to read my last post. I can never get over how well Dan describes PD and its symptoms and effects on our lives. If you haven't done so, you should click on his link listed on the left.
Next subject - Cholesterol meds . Family doc put me on Zocor or tried to about 8 months ago. I read the side effects and never filled the Rx-
On a routine visit 6 months later he shamed me into trying it for a month. Turns out it nearly ruined me. GEEZ- does anyone out there take this stuff and function normally ? If so, let me know !
Stopped taking it two days ago and feel like a new man !
All for now- take care !

LIFE AS WE KNOW IT.......

2008-07-28T19:41:00.000-07:00

Life as we know it....is over. For lots of reasons. Don't get me wrong, life isn't over , in some ways it's just getting started ..again :-)
But the life I thought I might have is certainly in an "altered state" so to speak. Hence, the quote at the top of my blog , Life is what happens when we make other plans.
This week it seems really clear to me that I am changing quite a bit in many subtle ways. PD can be such a cunning little disease that the changes are sometimes not so noticeable to the person with the disease. Or, maybe we are so preoccupied with it that we neglect to think of how some things may affect those we love.
My Mary and I were discussing two areas recently that she has had issues with and you can read about her struggles on her blog. The two areas are:
Lack of emotion or Apathy and voice changes. I know I usually tell little stories on my blog but this is kind of important....it potentially affects every relationship in my entire life.

My doctor forewarned us about facial masking and apathy but it kind of crept in without me noticing. The one person closest to me is so good about recognizing these things , I am thankful for her insights even when it pains me to admit I missed something along the way. Now that she has pointed out how it affects her I can look back and see how it may be affecting other things and other people.
For instance, I have had several customers who know me well tell me I don't look good or ask me what's wrong with me. My emotionless face and speech is showing itself in every part of my life. What this points out to me is that in order to take care of those closest to me I need to be sure I use words to express my feelings and if I can, try to force some form of emotion out of my dead pan face.
It also gives me some type of explanation for those times when someone I don't know well asks if I am all right.
I can't help but wonder how this may eventually affect my career. After all, most people know nearly squat about PD except that it makes you shake. People in general don't know anything at all about facial masking, apathy, speech changes, vision changes, rigid or slow movements etc.
To be honest , it has upset me a little. I feel bad that I missed the signs on how it was progressing. I feel worse still because I know how much worse it can and likely will get and I hate feeling like I am letting people down who love me. I have heard my sister in law say she misses the man she married ( my brother has PD+MSA)and even though it is obvious looking at him what she means, I really didn't expect to not be ME so soon I guess.
Even though it's hard to show emotions or passion with this disease it is all still there trying to get out. So, the challenge for me is to make sure the people in my life know how I feel aven when my voice and body language try to sabotage my efforts.
Thanks for the heads up my honey !

A MIXED BAG.......

2008-07-23T18:10:00.000-07:00

I never seem able to keep up with blogging....but I am trying ! Lots of little things to chatter about...
Remember the old lawn mower I took to my Dad ? He has used it twice and is having trouble using it due to safety lockouts ( won't start if blades are engaged ! ) and other things of a similar nature. It's pretty funny , I keep going over and showing him and he finds another way for something not to work...LOL

If you read my blog chances are you may read my wife's blog "Life with Shaky" . If not you should, that is where all the inspiration and stuff gets written and you can keep up with us better because she is blogging more than me. She recently posted about me exercising and I must comment...THANK YOU SO MUCH HONEY, YOU FINALLY SEE THE LIGHT !
Meaning I got a little credit. Basically she finally realized that I walk enough at work, I bend, stretch, workout in the yard and in the shop working on my car. Read it, please, I feel so vindicated ...
Speaking of the car, it's coming along slowly due to time issues. The subframe is removed and I will be sand blasting and repainting it soon, then a disc brake conversion will be hung on it. Hopefully before winter the body will go to the chassis shop and be cut out and a narrowed rear clip installed.
August promises to be busy- A new PD support group to attend on the 2nd. A wedding to go to on the 9th, a gun show on the 16th and a big hot rod show and swap meet on the 23rd.
Ain't lookin like I am slowing down none too much...
BUT
I have had two or three people tell me how bad I look recently. I think it is the heat, it gets to me quick now a days and probably also a little facial masking along with that rigid left arm, I probably do look bad , but I feel just fine most of the time. So , if you see me and my face is blank or I look bad, I am fine. It's just PD lurking around .

My son posted a comment about going to the go kart track again. Think I may pass on that one. I hate losing , maybe I will spectate or shoot video for him....

Well, may be more later ....

SO MUCH MORE - CONTINUED

2008-07-02T20:12:00.000-07:00

June was a busy month for us. We took a long awaited real vacation to Virginia Beach and had a nice family time. Made some of those old time looking photo's which are really cool looking....celebrated our fourth wedding anniversary while we were there. Seems like forever but in the best possible way sweetie !
As soon as we got back I spent an hour on the go kart track with a bunch of 20 somethings- a guy that used to work for me was getting married and he started his bachelor party off with renting the kart track at VIR in Danville for all the party attendees which included my son. There was a lot of trash talking about who could outdrive whom between my son and I leading up to this event.
Let me tell you- I GOT HAMMERED !
There were fourteen of us and I had the slowest lap time at 57 seconds. My son of course had the second fastest time at around 47 seconds...He showed me that day that all the work he put into his road car and all the time he has spent learning to drive curves instead of a straight line like old Dad, all of that became real for me that day. I was already so proud of his mechanical aptitude beyond measure. I knew he was a pretty good road course driver but I didn't realize just how good until I saw him do it in the go kart.
To my defense, I am about 100 pounds heavier than most of those kids and also, the lap sheet gave average lap times of all your laps and when you look at those times I was in the middle somewhere. Meaning I drove the course HARD every lap even though it took all I had in me to do it , others ran a few good laps and took it easy. When I compete at anything, there is only one speed- WFO. Same approach to PD- full speed ahead. A friend of mine told me to hang in there today- to which I replied " It (PD) will have to come and get me because I ain't giving up "
The next week after vacation my wife had obligated us to go to Richmond to support a guy with YOPD who was motorcycling around the country to raise money for PD research. We went, me not expecting much but boy did I get a surprise. Not only did the press cover the event, they swamped us taking photo's and interviews. Partly because we drove an hour and a half to support this but mainly because I wore a shirt that had SHAKY on the front and my wife's shirt said I'M WITH SHAKY.....Everyone wanted to know where they could get them. We made the front page of the Richmond paper -local section, made ALOT of new friends and I am sure we will be back in Richmond before it's over with...
If you want to read about the motorcyle guy here is his website- www.rideagainstparkinsons.org

It got me to thinking- If he can raise $10K riding around on a scooter - as many people as I know, I should be able to do that too....let me have some feedback on that would you ?

Anyway, it's late and I am heading off to bed. We have a new baby in the house - NO we are not pregnant...foster child from Haiti here on a medical visa for surgery. Here's how this goes:

ME - skeptical, cautious and reserved
MY WIFE - enthusiastic and ready to go
ME- humbled and learning another lesson

More on this next time !

MISTRESS, MOWING AND SO MUCH MORE

2008-07-02T19:28:00.000-07:00

WOW, my last post was in early May- long time, sorry to my one loyal reader (DP) :-)

I ended my last post saying I would tell you about my mistress next time so I guess I better keep some kind of continuity....of course it's a car. For all the years and cars, trucks and motorcycles and even boats I have bought sold and traded there is one in particular that stands out. The 1969 Camaro is far and away my all time favorite. I have owned three or four of them and it was also the very first car I ever owned. The last one was sold in the early to mid 80's before the prices of these cars went stupid. I bought that last one for $1800- sold it for $3600 and thought I was pretty savvy. Today, the same car in that condition would bring nearly $20K...

Over the years I have conditioned myself to accept that I would never be able to buy another one prices what they are...but in my last post I noted that the yellow truck got traded for another 1969 Camaro. A basket case that still ran me more than what I sold the last one for ...forurnately I could trade and get some cash to boot.
So there you are- my mistress is a 1969 Camaro for the next few years. I am telling folks that this is my last project. Most don't believe me or don't want to discourage me, but it likely is the last car I will build. You can watch my progress at www.bhsbees.com/keith
Anyway, about that grass mowing - what is so special about that ?
On Fathers Day , I finished fixing up my old riding mower which is still better than my Dad's antique riding mower. I took it to my Dad's and my son helped me install a battery and the next time Dad mowed his grass, I helped on my old mower. I actually like mowing grass you see. And I have good memories of mowing with my Dad when I was a teenager. There was just something very special about the two of us (him at 92) running around his yard mowing together. After all, he taught me to mow and he is still teaching me stuff today , when I listen...which I am much better at now that I am older. Anyway, it was a Hallmark moment that no one else likely can understand and I wanted to write about.
The other day I went by and he was getting ready to mow again. Guess which mower he used ? The one I fixed up for him. I love it when a plan comes together....

IT'S COMPLICATED YOU SEE............

2008-05-07T18:41:00.000-07:00

First I want to acknowledge a new friend....David S. from SoCal, thanks for stopping by and look for an e mail from me soon !

This will be a very random collection of thoughts so bear with me.

We all know stress is the enemy of PWP but how do you avoid stress these days ? Some PWP find a way to quit their jobs, spend time with family, exercise a whole bunch and apparently can exist in a zen like state 24/7. I am actually happy for those who can do that. Unfortunately I can't swing it right now. That's a little frustrating to me I admit.

I feel lucky though. I am still able to work. I can do pretty much everything I want to although sometimes I need a hand for a really tough job like changing a motor or building a flower bed. By far the biggest impact to me right now is the loss of some use on my left side and the constant fatigue after about six hours of activity. I know it is distressing to my wife when I have to crash for an hour or two and I worry about that a lot but I am trying to take shorter power naps so as not to take time from the family. If you have PD, you know what I mean about just having to lay down for a few minutes....

This past week has really been a tough one and it won't get any easier for a couple more weeks. My son swapped turbo engine into his road car over the weekend and is now in the final stages of that. Very Very proud of his expertise, work ethic, and above all his willingness to learn whatever it takes to make his dreams come true. He came up with a saying a few years ago when we were working on a GEO Tracker he wanted to build.
"It's not what you buy, it's what you build" \
Great stuff !
Along with his project, I recently made a deal to trade the yellow race truck at the top of this blog for a 1969 Camaro project car - See Quote Above...:-)
We had to pull the motor and transmission out of the truck today so it could leave Friday. Needless to say I am beat but excited about this new project- more on that in my next post.
So I am busy in the shop, busy at work, trying to get a Mothers Day trip to the beach in this weekend to treat my sweetie, dealing with typical pre teen issues, trying to understand why my paycheck doesn't go as far when I am making more than ever ( gas, groceries, etc are a big source of frustration) but somehow .....even though it's complicated, life is sure worth it.

I had a special Daddy moment tonight. Right after pulling the motor out of the hot rod , totally drained of energy and starving.....eating dinner....
My 17 month old daughter was playing with a keyboard that play little tunes and her mom told her to dance...which she promptly did. Very cute.
Then she called to her mom and held out her hand wanting mommy to dance , which she did of course. Even more cute.
Then of course my little baby girl held out her hand towards me and said - Daddy ! She wanted me to dance with her next. For just one or two seconds I considered making the excuse that Daddy was just too wore out to dance. But then I thought about how old I am (52) and having PD and it hit me that there was a pretty good chance I might not be able to dance with her one day sometime in the future. For sure not at her wedding. So we danced. First seperate, where I invented a new step called The Shaky Shuffle, and then with her in my arms twirling her around.
What a special moment brought to me by PD. If not for PD I would take that kind of thing for granted but instead, it's like the latin saying " Carpe Diem" - Sieze the Day ! Or in this case moment...which brings me to another saying I like - coined by a friend of mine who lost her battle with Cancer about five years ago. She said " Every one you don't take is one you don't get" meaning opportunities of any type.
So , you see it is complicated. I figure If I can find something about PD that I can be thankful for that makes a better person or Daddy, then my day was a success. Hope yours was as good as mine.
Next time I will tell you about my mistress......

SAY WHAT ?

2008-04-29T19:54:00.000-07:00

I know you didn't .......slam me intentionally that is !

My wife has her own blog " Life with Shaky" which is her on line journal about our life and dealing with my PD. She has an ongoing series it seems - Confessions of a PD wife.

I often learn things I may never have known reading her stuff and sometimes I feel compelled to defend myself a little. You must understand though that she has vowed to not hold back and be honest and she admits that sometimes she blogs about how she is feeling at that very moment and it may come across as harsh to some readers. This point was driven home recently by a friend of mine who reads both blogs. He commented to me that I better get shakin so to speak ( cute play on words huh ?) so first, I defend her. Everything she writes is out of love and concern for me even if she has to slam me. As well, she has a lot to deal with both now and going forward and as I said, even I learn interesting things reading her blog.

So how do I respond to her Confessions of a PD wife ? Either my jaw drops or I laugh out loud...

For instance:

Honey,
I will teach you how to mow the grass on the riding mower, don't let that keep you up nights.

You won't need to take care of vehicles, you have a motor head step son who will have your back.

I did finally find the right weight machine and I am using it , some.....:-)

I have made some changes with my free time vs. hobbies vs. your honey do list .....don't I listen well ? LOL

The one serious thing .....my memory is fine !!! You must understand- guys don't remember everything like women. We are far too lazy. If it's important in our minds we remember. If not we let it go.

Big difference in our writing style. But in the end it works for us.

Meet me in the shop honey , I'll show you how to mow if you will remember some stuff for me....sounds like a good trade to me.
Anyone else out there care to comment on the difference in male memory and female memory ?
C'mon be brave - step up and help me out.

I QUIT !

2008-04-29T18:33:00.000-07:00

I finally give up. Game over as my son Bryan says....After building, racing and enjoying my hot rod for years I am ready to admit I can't do what I used to.
In my earlier post you may remember I recently put a new motor in the truck and have been working the bugs out....the bugs won.
No time, no patience, stress I don't need. So tonight I waved the white flag. I am sure I will work on it again and soon, but I have one of the best friends ever and he has been so good to me over the years.....a fellow drag racer.
This guy gives me more grief than both my ex -wives, my lovely wife and every old girlfriend I can think of...24/7 nagging, teasing, belittling, in general a perfect ass towards me. That is, unless it's quiet and no one else is around. In which case he shares his private thoughts on life and happens to have a heart the size of Texas. I can't tell you how many times I have seen people take advantage of his kindness and talents when it comes to cars or anything else for that matter.
My wife knows his ring tone on my cell phone ( which I purposely made the most obnoxious one I could find :-) and when it goes off she either groans and rolls her eyes or starts singing " Secret Lover" !
Anyway to cut to the chase , he is a one in a million kind of guy who most people never get to know in any depth. Fortunately, for me, we have a friendship I think we both value a lot. Either of us would do anything the other asked if we possibly could. After irritating the other as much as possible of course...
He has seen my brother with PD and he has more of an understanding of where I am going than nearly anyone else except my wife and my family. And he still makes fun of me for shaking which I know is all in fun. The other day a mutual friend of ours made some crack about me moving at a snails pace....in a large group of guys hanging around the race shop. My close buddy shot me a glance and later told me it really ticked him off because our mutual friend has not even figured out there is a reason for my stooped shuffle / shake. Secretly defensive and protective of me...kind of nice.
So I will work on the hot rod again. But my buddy has already agreed to finish the de-bugging , tuning etc. I will make him take some form of payment because I refuse to take advantage of his friendship. But it is nice to know that someone other than family has my back ya know ? How many people do you meet in your lifetime that you know will be there for you ?
One of the funniest things we have laughed about happened right after I was diagnosed with PD. We were talking about me one day having to use a hoveround, one of those electric scooters....and he said if it ever came to that he would fix one up that would be so fast it would need wheelie bars. And he would do it too.
So tonight I will sleep a little better knowing that sooner or later, together, we will find all the bugs and fix them. What a guy....
By the way, if you ever read this .....you still owe me two dinners. See ya at the races !

CALM, COOL AND COLLECTED......ALMOST

2008-04-15T08:47:00.001-07:00

As you can probably guess, I am a car nut. Have been all my life. In specific, I love drag racing and high horsepower Chevrolet engines. Yes, that is me driving the bright yellow drag truck a few years ago. I still own it. As a matter of fact I have just finished putting a new engine in it. Still working out a few bugs....
This past weekend I took it for a short test drive in the neighborhood and when I returned , my tremor was off the charts and I commented to my son that driving it made me so nervous anymore that I should probably sell it.
It's not the first time he and I had this discussion but this time he took time to question me more closely.How can something I love doing and have been comfortable doing my whole life make you nervous he wondered ? Good question....
I made the same comment about selling the hot rod to my best friend, Jr. , who is also afflicted with the drag race bug and he told me it was all in my head, get over it he said....

Well, all this talk made me wonder ....how can I accurately explain to people what I am feeling ?
It was obvious to me that two important people in my life DID NOT understand...So, what to do....Ask my wife of course. If you read her blog you already know she is a great writer, communicator and very smart. I was not disappointed.
She immediately pointed out that anything that gets my adrenaline pumping makes my tremors much worse. When my tremor is worse, I get stressed even more and around and around we go until the adrenaline slows down in about fifteen minutes. I knew this was true because it doesn't have to be something unpleasant in order for my adrenaline to pump and the tremors to kick in full force. Use your imagination to think of something pleasant that may get my adrenaline pumping...:-)

After having my sweetie explain the obvious to me I realized that my son and my friend did me a huge favor in forcing me to examine the real issue. I am not using the right description in telling people how the tremors feel. I am not nervous driving my hot rod, only pumped up. The same rush I used to get driving and racing fast cars now produces an ugly side effect....tremors. But it isn't because I am nervous. The tremors may make me appear nervous and I certainly get irritated with the tremors but it isn't nerves.
I drove it again today and felt better. It's loud, it shakes the earth, small children are scared of it and guys all up and down the road give me a thumbs up when they see me out in it. Teen age boys take pictures of it on their cell phone cameras and it generally draws a crowd in a parking lot. If you would like to see more of my hot rod, you can go to www.bhsbees.com/keith.

I know sometime in the near future I won't be able to drive it and that will be a sad day. But until then, keep an eye out for the cops would you ?

I Can't Believe I'm This Poor !

2008-04-08T20:17:00.000-07:00

It's all about where you've been .......

This is a two part post. In order to really get the full effect you must also read my wife's blog titled Life with Shaky and her latest post, I can't believe I'm this Rich !

The story begins the other night when my wife and I were discussing money, bills and the current economic downturn in this country. I complained that we were just barely scraping by these days. We have had numerous conversations over the last year about how high gas prices are going, how it affects the price of almost everything else and how difficult it seems to make ends meet anymore.
Actually, we have taken some drastic steps over the past year or so to try and become debt free with the exception of mortgage and normal household expenses and we are close to achieving that goal.
BUT, you have to understand that I am a worrier. In fact if I got paid by the hour for worrying, all our bills would be paid and we would have a big savings account !
Anyway, as I lamented the cost of living and our barely scraping by in my eyes, she was laughing ! At about the same time we both said what a great idea for a blog post....opposite viewpoints on one of the big issues every couple must learn to solve !
You can read about her perspective as I noted above.
My frustration is more based on the current economy and gas prices. I make decenet money. And as she says in her post we actually ARE NOT just scraping by. But ten years ago, the kind of money I make would have been enough to go, do, buy , whatever I wanted.
I hate the fact that I have to plan, manage and execute carefully when it comes to money. I do that enough at work ya know ?
I hate the fact that traveling abroad is now dangerous and outrageously expensive.
I hate that I can't spend $100 on whatever I decide I want without making sure it won't run me short on a bill.
The UP side of this post ?
I talk to people every day who have NOT managed their money well. I have friends who make bad decisions in spending or who made bad decisions in the past and are most certainly going to suffer the consequences in the near future.
The reality is this ....we don't just scrape by really. My beautiful wife is a lot of things. Talented writer, wonderful mother and wife, fun, witty, strong, very smart and best of all, she keeps me in check when I worry too much.
We own a nice home on the lake, no big thing, needs some things here and there.
We have four cars all paid for with a million miles on three of them. The fourth one is at the top of my blog and I guess I don't know anyone that is scraping by and owns and drives a 7 second hot rod.
We have cell phones, cable TV, internet, food to eat and clothes to wear.
I guess it's true, perspective is everything. Our two perspectives, while on opposite ends of the spectrum, always seem to keep us on balance.
So, even when I lament about just barely scraping and feeling poor , I am actually rich beyond compare...............because there's you in my life.

How long ?

2008-04-04T18:15:00.000-07:00

I recently got a comment from another blogger with PD that was very kind and sincere. She said my post "Who is the victim in all this anyway" had struck a nerve and like everyone I like positive attention. It's nice to know someone got something out of what I wrote.
Tonight however instead of medical issues or stories about my past or even present , I want to vent my frustration so bear with me....
How long ?
I suppose everyone wants to know if they are honest. Even children in their limited knowledge of the world around them still ask, How long before we get there ? How long before dinner is ready? How long before bedtime? We all grow up wondering how long ?
As we become young adults, our questions change.
How long before I meet someone and marry....have kids....buy a house....get that promotion...
As we become middle aged....how long before the house is paid for .... before I can retire.....before I become a grand parent ...
If we are blessed as my Dad has been ( He's 92) we might ask how long before I die ?
That's natural.
Unfortunately, some never see the end coming or it comes too soon. For anyone diagnosed with a medical condition such as PD ( but not just PD, any chronic, degenerative disease ) the questions about " How Long" multiply like bunny rabbits.
I know, it's probably better not to ask or be able to find out, but like a child riding in a car we can no more help wondering than we can help taking our next breath.
Don't get me wrong. I don't want to know about dying. I know all I need to know about that. I will die. When , where and how is not up to me and just knowing that I will die and accepting that fact enables me to live each day in a better way.
No, what I am wanting is more complex....How long before PD will force me to retire....stop picking up my beautiful baby girl...
How long before I get a good idea of how fast it is progressing ? How long before I can't type ....drive....drive a hot rod .....
How long ?
It's apparently the question we are born to ask all our lives and can never fully get answered.
Personally, it's particularly frustrating to me because of my personality. From what I know, have read and see in other PD patients it may be another five to ten years before see more , really serious issues...I sure would like to know.
But you know what ? I guess it isn't going to be tonight, tomorrow or next week and likely not next month or even next year....so the best thing I can do is live while I can right ?
Glad you guys helped me work that out, Thanks !
Until next time,
Shaky

LINKED UP !

2008-04-04T18:04:00.000-07:00

My wife ( bless her heart ) sometimes has more time than me to surf the net, look for information or other blogs dealing with PD. I appreciate the time she spends on me more than I probably show...
Today she was very excited about a blog by Patient on line ( Dan ) who has Parkinson's Plus and when I checked out his site tonight I can see why she was so excited. Dan is educated, articulate and his site is full of very good information on PD and all it's many forms. I will get her to link his blog to mine tomorrow. He is already linked on my wife's blog Life with Shaky.
If you want to be well informed either as a caregiver, family or friend I encourage you all to visit this guy ! Nice job Dan !
I can never find enough time to write but I have a new topic in mind so stay tuned....

Boxing Therapy and other short topics

2008-03-06T16:27:00.000-08:00

ABC News aired a short segment on Boxing as a way to combat the effects of PD. I didn't see the program but read the transcript. I must say that if they have had the success claimed, where do I sign up ? Don't know how I could start a similar group here but have shot an e mail off to the President of YPIndiana and hope to hear back from him.

If you are confused by one of my recent posts it will help if you first read the post on my wife's blog where she notes confessions and fears she has regarding my PD. Her blog is linked here and is titled Life with Shaky....

I recently bought a little S-10 pick up truck, lowered, which several people have been kind enough to point out is about 30 years too young for me. Toying with the idea of painting it myself because I always wanted to paint my own ride and painting is one of the few things I have never tried when it comes to hot rodding. We'll see. Speaking of hot rodding, my son developed the same passion and is much better than I ever will be with trying anything and making it work. Afraid of nothing, an excellant mechanical mind, I am so proud of what he has done with his hot rods. Once I get the new truck finished and my old race car motor back together we are planning to park all four hot rods together and take a picture of our rides and us. When that happens, my photo will change on the blog....He even coined a slogan for the way we feel about cars...
"It's not what you buy, It's what you build" Pretty cool huh ?

I need to get back to story telling. I think next time I will post about how we came to have our youngest, little 15 month Rielly-Anne...
Later

WHO IS THE VICTIM IN ALL THIS ANYWAY ?

2008-03-04T16:51:00.000-08:00

If you read my previous post you know by now that I am not the victim, not anymore at least. So who is ?
Based on some recent posts by my sweet wife I am afraid she may be the victim in all this....she obviously has some guilt about me moving a little slower than she would like and other such things. She posted "Confessions of a wife whose husband has PD " or something like that on her blog "Life with Shaky" - go read it, I should probably read it again, take notes and then respond. But I'm too lazy and this way if I remember wrong I have an out so to speak :-)

Anyway, WIFE, I say to you:
* Sorry for the times when I frustrate you and if I move too slow at times. It's OK. I get frustrated too, as long as you know I am doing all I can, It's all good !
* You won't crack under pressure, you are strong, you are my rock and I trust you .
* Don't worry about money. Do all you can , plan for the worst, hope for the best and know that everything is in God's plan for us.
* PD IS NO BIG DEAL TO ANYONE EXCEPT PWP AND THEIR FAMILIES. If someone doesn't seem to think it's a big deal it is likely due to ignorance. Unlike PD, ignorance can be cured, STUPID is forever. Don't sweat the small stuff honey. Concentrate being happy today.
* Anyone who thinks having a child ( if you want to have one ) at any age, with any illness is STUPID, not ignorant. See above about no known cure for STUPID.
Our children , all three of them are gifts and cannot be mistakes by anyone of normal mental capacity.
* Why would you want to skip out on me, we just got started good :-)
* I know you sometimes must feel sorry for yourself, we all do some day or another. Please refer to my post on choosing to live while I can. Don't waste your time on sorry, lets figure out how to live like tomorrow may not come...
* Don't let our kids feel sorry either , let's teach them to LIVE
* We ARE perfectly happy- not " except for PD " BUT IN SPITE OF PD !!!
* No hard feelings on the surgery my honey, look where it got us ! A good trade in my book !
* If something happened to you, I would get help taking care of the kids, don't worry, LIVE. You can't change yesterday, tomorrow isn't promised so quit worrying.
* You want more kids ? Remember how we do that ? ( Couldn't help myself sorry , gotta have a little fun with you ! )

To give action to something I recently learned , if you don't know, let me tell you:
I love you to pieces, you make me very happy, you are a wonderful mother and I know when the time comes you will take good care to me. You are the best. You are the love to me life.

I know it's not easy to be married to a PWP and mostly I feel worse for you than me , but let's not be defeated. I refuse to wave the white flag. Now..............lets GET TO IT ! LIVING that is....

THE WORLD DIDN'T STOP TURNING..........

2008-03-04T15:41:00.000-08:00

A quick note about a new book I just started....The title is "Tuesday's with Morrie" and it's written by Mitch Albom who also wrote " The Five People You Meet in Heaven"
Once I finish the book I will write more about it but the very beginning struck a nerve....when any of us is told we have a chronic, devastating disease like PD or even a terminal disease like ALS ....one of the first hurdles we have to overcome is the realization that the world is not going to stop turning, life is going to go on as before with or without us and we can choose to live while we still can or we can throw the towel in and not live at all.
Recently I attended my second PD support group meeting and sort of turned a corner in respect to my thinking. Within the group there are many many people with PD who have lived with it for years. Although still working and living a somewhat normal life my mind had already resigned itself to defeat by PD.
More than a year after diagnosis I realized that although I am unable to live like I used to, unable to do some things I used to, I am still doing most things and I likely have a lot of living left to do.
We tend to forget how fragile and precious life is in the day to day rat race of life in general and we forget that it can all end in the blink of an eye for any of us for a whole host of reasons. So why feel defeated ? Why not live every day enjoying all of it we can ? That is the choice I have made and it has opened me up to a much happier existence, even with the shadow of PD lurking beneath the surface.
This new book promises to open my eyes even further as it deals with the business of dying so stay tuned, I expect to have a lot to say about it soon...
But now I must open a new post directed at caregivers/spouses.....

A VISIT WITH THE NEUROLOGIST

2008-02-04T17:30:00.000-08:00

Well, as I said before, we were pregnant and less than a month from delivery when I finally went to a Neurologist.
My first stop was at the local level here in town where the doctor said he was certain I had PD but in order to eliminate stroke and other possible issues he ordered an MRI and some other stuff I don't recall.
What lead to me going in the first place was the fact that the tremors on my left side had become much more visible and I felt that I had lost a lot of strength on that side. My wife had watched these changes occur ever so slowly and I could feel them now in my own body. One other person that works for me at Advance Auto also noticed the loss of arm swing and loss of use in my left arm even before I really noticed it. When she questioned me and I started to take notice I was kind of shocked that it had happened so slowly I had not been aware of it. Thanks TK !
Anyway, I had also noted a couple other things and I knew it was time to go get the news I had known myself for several years confirmed.

The local guy looked over the tests and recommended a world class research neurologist at UVA , we will call Doctor Fred. I knew of him thru my brother who had been diagnosed 5 years earlier and my appointment with him was set. He agreed and provided a little more insight...

By now, my older brother had been diagnosed with PD+MSA which is a much more devastating and fast moving strain of PD. Dr. Fred told me that there was only about a 3% chance mine would turn out like that. That was a year and a half ago but I won't fully believe that until I hit about 5 years in and don't see signs of MSA. I will tell you, it is a terrible manifestation of an already nasty illness and it scares me to death.
Dr. Fred also taught me how to "feel" the stiffness in my left side and started me on a drug called mirapex. Check out the side effects of these little jewels sometime when you have time....

Anyway, my wife felt I was in denial because I came home and went to work the next day and it life as usual. I was relieved to know for sure what I had been guessing for years and saw no reason to get all excited. They say knowledge is power....They also say ignorance is bliss....I never can figure out who "They" are but "They" must be pretty smart folks because both are true just at different times.

In my case , what my wife took as being in denial was just my phase of ignorance is bliss. Even though I knew some about PD, I would soon find out and experience more than I cared to know. It is safe to say that I am ignorant no longer.............more to come.

HOW I MET YOUR MOTHER

2008-01-28T16:47:00.000-08:00

Actually, in my last post, I let on how I met Mary. I just thought it was a catchy title. It's what happened after I met her that is the real story....
Mary and I hit it off pretty well. She was more , no, much more mature than many women twice her age, she is intelligent, well read and very smart. She can carry a conversation on almost any subject and we had a good time on our first few dates. She says she knew she wanted to marry me pretty quick. I took my time being skeptical and stubborn. The first time I met her Dad was by accident, I was dropping her off and he was stopping by. I knew he would have a hard time accepting the 22 yr age difference and he would barely speak to me. Looking back, had I been him I don't think I would have been able to keep from kicking my butt ! These days he says he loves me to death but I watch my back around the guy ( only kidding Mike !!! ) . Seriously, he is a great guy that I respect for how he has accepted me. After all, he is only three years older than me !
Anyway, my oldest brother had just been diagnosed with PD when Mary and I met and I told her I thought I had it too. She said she could handle that if I did have PD later on in life. At the time, neither of us knew as much about PD as we do now and obviously I had it then just had not been diagnosed.
We dated, she kept me at arms length with her then 4 year old son and looking back, that was wise. When we really got serious, we talked about more kids and for many reasons , determined that we would not have more children if we later got married. SOOOOO, I got snipped and put that little issue to rest.
This is where the age difference really comes into play along with a womans propensity to change her mind on any subject....
Fast forward, we eloped sort of to Vegas ( a whold nuther story) been married about a year when she pops up and says she wants us to have a baby!!!
Needless to say I was floored, after all , I had been "fixed" ...again, in the interest of time and in response to the difficulty I now have typing I will fast forward.....
After raising $6 grand in cash, with the aid of some very skilled surgeons at UVA , I got reconnected and pretty quick little Rielly-Anne Abigail was on her journey into our family.
She was born on 30 Nov. 2006 and boy is she beautiful, smart and loving.
However, just before she was born I finally visited with a Neurologist who told me I had PD and life changed quite a bit after that.
Next chat, I will try to tell you about how we knew it was time for me to see the Neurologist and what all this has been like....

Starting Over

2008-01-26T05:40:00.000-08:00

After two ex wives, one son and a couple of long term relationships I realized I had been single for nearly 15 years and had learned to be pretty happy that way. I had a decent job making above average income. Over my career in sales and project management I had managed to visit most of the United States, Canada, Mexico, England, Germany, Switzerland, Venezuela many of them more than once. After my last long term relationship ended I decided that I wanted a part time job to occupy my free time...something unusual and totally different. Well, I ended up working in one of the biggest nightclubs on the east coast as a "bouncer". Yes, size does matter ! At six foot and 240 pounds with the right clothes and attitude I am able to intimidate small childred and most drunken adults.
To say this time was interesting and fun would be an understatement and I doubt you will ever see all the stories I can tell here on this blog.
At this time I had quite a rep for lovin and leavin em.....I was at a great age for meeting divorced women whose kids were grown like mine and were free to play.
And then this girl named Mary came to work as a waitress in the restaurant side of the club.
I didn't think anything about it, I gave her a few pieces of advice on how to work the system when she substituted in the coat room...we chatted a few times. Nothing unusual, she was younger but at the time I guess I wasn't paying as much attention as I should have...you'll understand as you read further.
One night, I subbed as a bartender during the night and she was the waitstaff....we hung around at the bar and never had the first customer on that Wednesday night. On a whim and trying to be "cool" I put on entirely too much cologne on a not so disguised trip to my car and in the end we went out for dinner after we closed the club at 10 PM.
She was 23 and I was 45 at that time.....Only later , much later did it dawn on me just how much of a gap that could be and what it would mean for the future of our family......

CATCHING YOU UP

2008-01-25T19:18:00.001-08:00

Now that all of the start up junk is handled, this is my opportunity to tell you a little bit about the past ....
If you couldn't tell from the picture at the top of my blog, I am and always have been a little bit of a gearhead. That IS me in the drivers seat and YES I still have this machine although at the moment shall we say I am between motors ? But I am sure I will write more on this subject later....
Not to go back so far, but I am the third in a string of four boys, born in 1955, lived in Virginia all my life. Married to my third wife and between us we have three children. I have a grown son, 24 years old and he is the very best....more on him later too. Then there is my stepson, 11 and he is a great kid as well. I am enjoying watching him grow up. And last, there is little Rielly-Anne who at just over a year old has brought me untold wonder and happiness so late in life by most peoples standards that I can't even tell you how happy I am to have made the choice to have another child !
It took me most of my life to find what I believe to be the happiest part of my life and part of my struggle now is feeling as if I can't fully enjoy it now. But still , I have so much to be happy about !

At times, my sweetie has blogged (nagged) that I am in denial about PD or not serious about fighting it but really, I just want to enjoy the time I have left (whatever that is ) and I have seen first hand that PD plays no favorites, gives no quarter and responds to very little, so it's not that I am lazy or unconcerned , but I want to really enjoy myself from here on out. But I digress.....

My grown son's mother and I have remained friendly over the years, married for ten years, divorced for around 15 now, she is a good friend to me and oddly enough to my wife. She is like an aunt to our new little girl and I wouldn't change this for the world.

Now that you know most of the characters , we can get on with the show....

AN INTRODUCTION

2008-01-25T18:47:00.000-08:00

WOW !
My very own blog....a place to tell my story, my way and respond to my wife's blog dealing with our journey into life with Parkinsons.
First a few housekeeping items...Thanks are in order to my sweetie for having the patience to help me set this thing up ! Also, for always supporting and encouraging me ( read that "nag the hell out of me" ) in dealing with this disease.
Second - I promise to be honest and open about everything I write here and I will hope not to bore you although unlike my wife, who jumped into the middle of our story, I want to start writing about life before PD first. Like I said, my story, my way...
And lastly, I want to have fun with this and along the way entertain some of you with the give and take of sometimes responding to what my wife's blog contains and I hope to make a few new friends in the process.
There now, my first post is done. On to the story......