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 !