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

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...........

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 ?

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

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.

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

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.......

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

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

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

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.....

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

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.