A Handbook for Life Center Blog

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What’s it like to have Parkinson’s Disease?

This article is entitled, “What’s it like to have Parkinson’s Disease?” The title of the article probably should be, “What’s it like to be in the early stages of Parkinson’s Disease?” I can’t speak about what it’s like to have the later stages of Parkinson’s (PD). My PD is in the early stage, and the later stages are stages that few people talk about.

PD is a progressive, neurologic disease for which western medicine currently has no cure. It’s different for everyone, but common symptoms of the latter stages are an almost complete loss of control of your body, an inability to communicate, and an inability to care for yourself. In the late stages of the disease, PD may cause complications such as choking, pneumonia, and falls that can lead to death. Yes, death from complications due to Parkinson’s disease. No wonder no one likes to talk about it.

I consider myself very lucky. I can still do just about everything I need or want to do. I was diagnosed in 2005 when I was 49, although looking back I believe that I had symptoms 7 – 10 years before that. If you and I were to meet at a party or in a restaurant you may not even notice that I have PD. My tremors are pretty well under control as long as I am on my medication, am rested, eat well, and not under stress. If any of those conditions are not met then I start to lose control of my body. I develop muscle spasms called dyskinesia. If you want to know what dyskinesia looks like think of Michael J. Fox. When you see uncontrolled movements like head twitches and flailing arms you’re seeing dyskinesia in action. I also develop problems speaking and begin to stutter and stammer. That’s not good for someone who is a public speaker. Prior to being diagnosed and starting medication I had what is called the Parkinson’s “mask”. That is an expressionless stare, which you may have seen in Muhammad Ali. Fortunately, my “mask” seems to be totally controlled with medication.

I, like many early stage people with Parkinson’s that I know, still get around very well. I still drive, work full time, and am physically active. What’s disheartening is watching other people that I have become friends with, many of whom are younger than me, going on disability and having brain surgery, yes brain surgery. DBS (Deep Brain Stimulation) surgery has been very effective in controlling PD for some people. Michael J. Fox and former Olympic cyclist Davis Phinney have both had DBS. I don’t even want to think about needing DBS yet.

What’s my average day like? When I wake up I generally feel rested and sometimes don’t even notice the tremors. I try to take my medication as soon as possible after waking up before the PD symptoms start. Once the tremors begin it’s harder to get them under control.

I am constantly aware of my body’s PD symptoms. Many times people around me may not notice that I am shaking, but I can feel it in my muscles. I constantly try to stay aware of my stress level, food intake, level of physical activity, and need for medication. It’s a balancing act that sometimes works well and sometimes gets out of balance.

What’s my attitude about the years to come? I am by nature a positive person. I cherish every day and refuse to focus on negative thoughts about the future. My feeling is that if I live my life concentrating on bad things that could happen, then I am missing the wonderful life available to me now.

Being diagnosed with prostate cancer in 2003 (my doctor now declares me cured) has enabled me to appreciate every minute of every day. I see a wonderful and fulfilling life ahead of me because I know that every day is a blessing.

Living with Parkinson’s, or I’m sure any chronic disease, is definitely an adjustment. The best way I’ve found to deal with it is to live my life to the fullest as best I can. It’s up to me to enjoy my days. Like I say in A Handbook for Life, “Life is a test. It’s a test of perseverance, a test of faith, and a test of will. I’ve decided to pass the test!”

4 Responses to “What’s it like to have Parkinson’s Disease?”

  1. Lyn says:

    Hi Richard, I’ve just stumbled onto our site. Stumbled is not a good word to use when you have Parkinson’s (sorry). I’ve just read your story and I can relate to it. I am early stages of my PD journey and I can still do most things. I refuse to let PD define me. I have taken on an active roll in my Parkinson’s Support Group mainly because my PD is not as progressed as some of the other members. I feel I can support the group well while I am at this stage of my journey. I try and make the most of my days. Keeping busy and keeping engaged with every part of my life. I am like you not worrying too much about the future. I will deal with that later when I have to. I have passed the test to.
    I hope you read this. Take care.

  2. Karyn says:

    It’s hard trying to explain what it’s like to have your hands shake to the core of you, or try to assure others that your really having a great time and. Your not mad(because you can’t help the expression on your face). It’s even hard to tell my young child that mommy just has a small paint able to do somethings like I once could, or how I can one day but not the next. How, yes I can eat peanut butter (I never liked it or the smell),but now I love it(can’t smell it, and it’s a very mild taste). My daughter now tells me when to check things in the oven because I can’t smell them hardly the way I could before. When I’m asked what it’s like I pull this up and let them read it, friends finish with tears,because very few understand.

  3. Richard London says:

    Thank you Travis for wanting to understand what your friend is going through. PD is different for everybody, but there are a lot of similarities. He may or may not want to talk about it, but I’m sure that he appreciates your caring.

  4. Travis says:

    Wow, thanks for posting, I have recently met someone I really like (who happens to be my boss) who has Parkinson’s so I was wondering what it’s like to be in his shoes (without asking him directly). So, thanks for sharing with me and giving me an indication.

    Best wisthes.