A couple with their arms around each other standing in front of a painting in a museum

Decisions, Decisions...When Parkinson's Sets the Terms

Generally, in life, we tend to do things that we feel matter. We spend our time and money on the things we value, ideally. One thing that Parkinson’s does for those of us who have it is cause us to make decisions based on what is best in an irregular situation. Once again, making these decisions is based on values, though our criteria changes to adapt to the situation that Parkinson's and its medications bring to the table.

Decision tradeoffs

Since my wife likes art, for instance, we will go to the museum in Philadelphia to see the Impressionist collection that they are featuring in a few months. We, well she, will be driving Route 76, a 2-lane nightmare expressway that was never meant to handle all of the City of Brotherly Love's traffic. This was never a fun thing, so I’m happy to let her drive. Despite this “problem,” the trade off is nice because we get to wander through and enjoy the day together after I "white-knuckle it" the whole drive.

Let it be said, mental stimulation and happy memories are a good thing when dealing with the early days of Parkinson’s.

As Parkies, we must make decisions to keep making memories as long as we can. In spite of our tremors and other symptoms, we still "get around," although slower. Having "adventures" is good because it allows us to feel like ourselves. We get to experience positive emotions instead of being consumed by isolation, depression, and what if / when. That stuff stinks.

Physical and mental considerations

For me, physically, I just have to watch my "clumsy" walk (in part, the dystonia) and my bradykinesia. Here, it’s not a problem - yet - because I wear comfortable hiking boots and I give fragile things a wide birth. That’s easy enough. If necessary, I’ll sit in a hallway, out of the way. Besides, nobody is going to see me again anyway, well, other than my wife. She gets it, so we’re OK.

Mentally, I have to make decisions about crowded places. Recently, my wife and I went to the Philadelphia Flower Show on a Saturday. Imagine putting 7,500 people in a place big enough for 5,000. Then put exhibits in there and try to move around. That's a recipe for disaster for many non-Parkies, let alone with someone who can get overwhelmed quickly. Still decisions "to be me" make us weigh this accordingly.

Thus, we make value choices to be able to do what we want to do. Here, we can find less hectic times to go, arrive earlier, or leave sooner. We can take breaks. The key is to know ourselves and what we can handle. Our family / friends will understand our decisions; trust me.

Decisions of appearance

Recently, I found myself confronting my values versus Parkinson’s realities. Here, I take Amantadine, which sounds like the name of a kingdom in some book by J.R.R. Tolkien. I have chosen this medication for two simple reasons:

  1. It (and Rasagiline) controls my tremors and symptoms.
  2. I have really bad side effects when I take certain dopamine agonists and anticholinergics. For me, this was cognitive. Like any other drug, they work for some people, but not for me. Choose medications that work for you.

With Amantadine, I get a condition called “livedo reticularis.” This isn’t pretty at all. It makes my legs look like a purple and pale Spiderman. Normally, I can cover this up with pants and nobody will see me unless I’m walking around my house like Murray Goldberg would.

However, this week, my wife noticed this “fairly common” rash on my arm. The cold brings it out, and normally, it disappears when warmed. Parkinson’s people on Amantadine get this rash and none of the other symptoms (like ulcers). When we get off of it, the rash goes away and we’re OK again. Thus, some patients will stay on it as their doctors monitor them to make sure there are no other bad symptoms.

For us, this is a value choice and our right as self-determining patients.

  • Stay on the meds and put up with the rash, thus putting off Levodopa / Carbidopa as long as possible (possible dyskinesia effects from increased dosages).
  • Choose to avoid the discolorations and go on a medicine that will treat our bodies better (not everyone has side effects).

Decisions of value

We could look at this decision as body image, but this rash isn’t pretty. If we go out with it, people will see us. This isn’t a question of vanity when people really do judge books by their cover.

The day after my wife noticed this, I went to work with a long-sleeved shirt. By mid-day, my Parkinson’s engine was running hot, and I found myself rolling up my sleeves. Talking to a coworker about my symptoms, our conversation drifted to how it’s better to make medical decisions than appearance decisions. At 47, this makes a lot of sense, and I went back to short-sleeved polo shirts. Nevertheless, I’m still ready with my Parkinson’s disclaimer should my web pattern get any unwanted comments.

I guess the message is that when we confront our Parkinson’s challenges, we should never stop educating and advocating in the name of understanding. In the meantime, I’ll just pretend I’m a web-slinging crime fighter instead of a guy with a weird geometric pattern on my body.

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