Sunday, December 18, 2011

The Process of living with PD

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.


Wednesday, December 14, 2011

Changes in Latitude, Changes in Attitude....

A Jimmy Buffet song ? Seriously ?

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 ....

Friday, May 27, 2011


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..................

Monday, April 25, 2011


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 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.....

Wednesday, November 17, 2010

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 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 !

Wednesday, November 10, 2010

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.


Thursday, November 4, 2010

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