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10 (More) Things I Wish People Knew About Parkinson's Disease

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While my previous article dealt mostly with the physical aspects of living with Parkinson’s disease, I realized that the physical aspects were just part of this battle. So much of the struggle I face with my Parkinson’s disease is the battle I face in my mind and emotions. In some ways, this part of the disease can be even more of a challenge and makes dealing with the physical struggle that much more difficult. As I considered this aspect of the disease, and how to help others understand, these 10 things stood out to me:

What is Parkinson’s Disease?

1. There is grief, more than I even realized, and sometimes I just need to cry.

In many ways, I am in mourning. I am mourning the life I thought I would have. I am mourning the death of dreams for myself and for my family. I am mourning the things I can no longer do, and this grief is real and something I continually feel as this disease progresses.

2. There is self-doubt.

Once, so sure of myself, but now, I can’t trust my own body from day to day. This causes me to question so many things, from abilities to relationships. It’s like continually trying to find your balance and never knowing when the rug will be pulled out from under you. There is always a little voice in my head now questioning everything, and the doubt it causes can be enormous.

3. There are days when I, and even my family, don’t want to talk.

Sometimes I get tired of hearing myself discuss and explain things. I don’t want to give another update, and I am just tired of thinking about it. It is nothing personal. I am not shutting you out. I just don’t want to discuss it and deal with it at that moment. I still appreciate you and want your help, so please don’t take it personally. Often, there is just really nothing you or I can say to make this better.

4. Sometimes I need to laugh.

This disease can be overwhelming and discouraging in so many ways. Personally, I hate being sad, but I love to laugh, so please laugh with me. I will make fun of my condition or tell a joke about it, and if I do, it’s OK to laugh with me. Also, if you are able, make me laugh — honestly, I can probably use it.

5. Sometimes it is hard to control myself.

Whether it is my body shaking or my emotions, somedays it’s hard to regulate this. My feelings will be up and down, sometimes I will overreact, sometimes I will shake worse than other times. Trust me, I am trying, but please be patient when my reactions, emotions or body are not cooperating.

6. There are days I am depressed and angry, and I just want to give up.

These days, it is hard to see a bright spot. All I can see is that “bad stuff,” and on those days there is no silver lining. When I reach this point, I want to give up and throw in the towel. On those days, please realize I have not given up, but I am just very tired of fighting and I am feeling discouraged.

7. Sometimes I need a kick in the pants.

At times when I am discouraged, I always need understanding, but some days, I just need a kick in the pants to keep moving and fighting this disease. I need to be reminded of why I am fighting. I need that push to get back up, leave my pity party and, once again, keep fighting.

8. Most days, I don’t know how to deal with me, so I can only imagine how hard it is for you.

My wife once told me, “I do not know who I am coming home to.” Guess what, sometimes I do not know either, and that can be very frustrating for us all. My reactions are not always what I even expect them to be and can be all over the place. Just be patient, I promise, I’m not trying to be a punk.

9. There is so much uncertainty and I am terrified of the future.

I told a friend recently, “I am not afraid of dying, because as a believer, I have faith and know where I am going. Honestly, I am terrified of living and just what that life will look like.” Uncertainty of the future and this disease many days is very frightening.

10. Sometimes I just need a hug and someone to sit with me.

Many think there must be some great act of kindness or tremendous gift or service, but sometimes the smallest things mean the most. Many days, I just need someone to put their arm around me, hug me, maybe even cry with me, and just say, “This sucks, but I am here for you.” This small and simple gift is the greatest thing anyone can do for those of us and our families caught in this battle.

I have no idea what the future will hold, and I have no idea how difficult things will get. But walking this path with people who care and seek to understand makes this journey that much more easy to travel. Without you helping us, we would not make it, so even when you don’t think I am thankful, please know I am and that your love and care give me the strength to keep fighting and take that next step.

Getty image via Victor_Tongdee

Originally published: May 11, 2020
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