What do you wish people knew about living with Parkinson's Disease, Part 1

How do you explain something to a person who has never experienced it? How do they understand what this disease feels like? It is hard for any of us to understand the depth of another’s struggle if we have not walked that path ourselves, but when we begin to see just a small part of what another is dealing with, it can help us as we work to help them.

I was asked by someone what it was like to have Parkinson’s and what I wish others knew and understood about this disease. I thought about it and realized it was harder to describe than I thought. As I began to jot down ideas, I realize how hard it is for even me to wrap my mind around this disease. I ultimately came up with a list of 20 things that I hope I can share with others to help them understand the battle many are facing. Today I will write about the first 10 things that have changed in my life due to this illness: 

1. Parkinson’s is more than just shaking. So many things are affected that many do not ever see – anxiety/depression, generalize pain, fatigue, difficulty sleeping, slow movement, spasms, speech changes, issues swallowing, cognitive issues, and so much more. Even when you can’t see the “shakes” there is a battle raging in our body.
2. Everyone with Parkinson’s is different. How I experience Parkinson’s is different than other patients I know. Some symptoms are severe, some do not show up. Some progress slow, while others progress fast – each person struggles in a different way with this disease, and no two of us are alike.
3. Parkinson’s is always there. I never get a break. There are dozens of constant reminders each moment that I have this disease, and there is nothing I can do to change it. There is never a time I forget about having this.
4. Even good days are not so good, because there is so much you can’t see. Even on days when I am doing “good”, everything is still a struggle and takes more effort. Very few things are simple, and most things take extra effort – even the simple tasks. Even when I am feeling pretty good, there is pain, tremors, stiffness, or any number of other symptoms.
5. There is always constant pain. There is never a time when I am pain free. I might have less pain that day, but there is still the “white noise” of constant pain in my body. In fact, I cannot remember what a day without pain feels like.
6. I am never getting better, and there is no cure. Unfortunately, at this time there is not miracle cure. All we can do is slow it down with exercise and control the symptoms with medicines. I can mange the disease and help my body become stronger to fight it, but at this point, I will never get better, and most likely, I will get worse – and that is a hard thought to deal with.
7. Sometimes I can do stuff, and sometimes I can’t. This can change moment by moment. Each
   
   moment, I never know who is going to show up – the man who can do stuff, or the man who cannot. I never know which it will be, or which plans or activities I can keep. If you are frustrated by this, imagine how I feel. The uncertainty can drive me nuts some days.
8. It’s not just like…(fill in the blank). So often when people seek to identify with someone, they can minimize that person’s struggle. My Parkinson’s is not like a cold, or a person’s leg falling asleep, or losing your balance, or being really tired – it is unlike anything I have ever experienced, and is not even like any other person’s Parkinson’s battle.
9. I am not the only one suffering. You see, I have a family – a wife, kids, sister, parents, and many, many more loved ones. Yes, I may be the poster child because I am fighting this battle, but they are hurting and battling this disease just as much as I am. It is hard, especially for my wife and kids, because just like me, they do not get a break, and must watch me suffer and decline. Just like me, they have to deal with all sorts of emotions.
10. Sometimes, it can be very lonely. Especially battling this disease at 44, my family and I, many times feel very alone, simply because we know no one near us, and very few even online, battling this disease. Sometimes, you do feel like no one understands, and that can be very isolating.

These are just some of the things that make this disease challenging. Day to day you never know what you are going to face, which is why we must take this disease one day at a time. Fighting this disease is hard, but it helps to have people around us who work to understand our struggle and help us along the way. I am thankful to have many of these people in my life. These people walk with us, support us, and care for us in a dozen different ways. Without them, I am not sure we could fight on. Whether they fully understand or not, I am thankful they are with us for this roller coaster ride, and that they care enough to care for us so well.