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  • Ned Neuhaus

A Different Challenge - Part 2

Meters Rowed: 146,915

Calories Burned: 8,145

Hours spent staring at the bare wall in front of me: 12


As I stated in Part 1, my solution to managing my Parkinson’s disease was to reduce stress and increase exercise.


Stress

Implementing the solution can be hard, very hard. My natural impatience leads to stress, which heightens my symptoms. I can immediately feel the difference in my symptoms as my stress level rises. It quickly becomes a vicious circle … concentrating on the cause of the stress reminds me that I am stressed, which in turn drives my symptoms. I really have to always be aware to try to avoid “hot buttons” that may raise my stress level.


In addition, Parkinson’s plays with my mood. I find I am quicker to get frustrated than I was a few years ago. I try to maintain perspective and stay ahead of my short fuse. Unfortunately, it doesn’t always work. Even worse, Dee Dee bears the brunt of these episodes. At its core, Parkinson’s tries to isolate you any way it can, it doesn’t care if it hurts the ones you love in the process.


Everyone has stress. Managing stress is part of life. Now, seemingly stress-free things have new challenges as Parkinson’s adds its impact. Even typing this blog can become a source of stress. My Brady-Kinesia (slowness of movement) on my right side makes typing a challenge. I gave up on writing legibly over 5 years ago due to my hand not moving slower than I think it is (Dee Dee jokes that I gave up on that 30 years ago!).


I type anything I need to be able to read later. Unfortunately, I make many, many mistakes. My brain tells my right hand to hit a key, but it moves slower than my brain expects it to. As a result, my left hand moves at “normal” speed and I often end up with letters out of order. I have never been a good typist, but the additional frustration Parkinson’s brings to the table makes it harder. Almost everything can bring a level of stress when living with Parkinson's.


Exercise

Exercise is the only action I can take to mitigate and potentially slow my disease progression. As a cruel trick, Parkinson’s makes something so important needlessly challenging. Stiffness, especially in my neck and shoulders greets me every day as I wake. I find I have to focus on getting moving as soon as I wake. If I don’t, it only gets harder to motivate myself to take that first step. The good news, my muscles do start to loosen up relatively quickly, even before I take my medication.


Most days, the first hour or so contains some battles with dystonia (severe cramps) in my feet. It manifests itself in my right foot. My toes curl under and I simply cannot uncurl them for a while. Something as seemingly simple as walking to the bathroom and taking a shower can be a struggle. I am fortunate that my dystonia is minor compared to some people I know. It is the only symptom I currently demonstrate that is “debilitating”. A little bit like those who suffer from seizures, I get a warning most times that it is going to happen. My toes begin to “dance” a little, warning me that I need to get ready to not be able to walk or stand comfortably. It can be quite painful to try to walk, it almost feels like my foot is going to break in two at my arch.


(On my way to the shower)


Yesterday was a particularly tough day. My dystonia came early and hard, and unlike most days, didn’t go away after a short time. It appeared multiple times at the gym during my workout.


“Is this the way it is going to be from now on? Have I entered a new phase?” ran through my head. Frustration tried to take over.


My foot began to curl as I jumped rope. Switching to jumping on only my left foot helped while I struggled to regain my focus. It came back on the rower. “Relax!” I kept telling myself. In the ring, hitting focus mitts. I drug my right foot around as I tried to maintain my footwork. It is not always like this, but sometimes it is. For most, just getting to the gym is a motivational challenge. On days like yesterday, the challenge doesn’t end by just entering the gym. Getting all the way through the workout becomes more difficult, but no less necessary.


Maintaining a positive attitude becomes mission critical. Unless I am focused on the positive and the things I am thankful for at all times, stress starts to lead my behavior and my symptoms worsen.


The bigger picture

All of this sounds terrible. It really isn’t. I think it is important to share because it is very real for millions of people around the world. It also is not well understood by the masses because people really haven’t discussed it in the previous centuries people have lived with Parkinson’s.


I am convinced that keeping stress under control and maintaining a challenging exercise regimen has kept my disease relatively at bay. If you told me on the day I was diagnosed that I would be rowing a million meters IN ADDITION to my regular exercise regimen 7 years into my journey, I would not have believed it. Parkinson's adds its challenges, no doubt. However, I believe I am rising to this completely new kind of challenge.


I live a very good life. I am able to do everything I want to do. That may change at some point, but I don’t dwell on it … I really don’t even think about it. It does me no good to focus on something that may or may not happen, that is wasted energy. The dopamine I have is too precious to waste. I need to put it all to good use, focused on things that are helpful or enjoyable.


Every day, I get better at the challenges living with Parkinson’s brings me, and I will continue to do so.

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