Parkinson's Status Check: The Ugly Truth of a Diagnosis

For those of us in the advocacy game, we expect to be contacted when someone's status changes to mirror our Parkinson's diagnosis. In my four years of being medically-labeled with "Parkinson's," I have been approached several times.

Sometimes it's for my friend's relatives. Other times, it's for people who are several degrees out from friends. Usually, it is to ask, "What happens now?" or "What can I expect?" The shock of the diagnosis is over. It's no longer personal.

I wish I could say for sure, but to put it simply, all People with Parkinson's (PwP) are different. That said, I'm always willing to offer answers, but I only know what I've experienced in my own status change.

Hoehn and Yahr Stages

One scale we use to determine our status level is through the Hoehn and Yahr Stages. There are 5 categories, the first 2 are the early stages. In these stages, Parkinson's changes the status of one side of our body and then affects the other side, too.

For instance, my Parkinson's went from first affecting my left hand in stage 1. Then it moved to my right hand in stage 2. For a while, the left was more tremor dominant. Now, my right side has caught up. On some days, it's actually running ahead.

My right foot has some issues with dystonia, but for the most part, if I go slowly and lean on something, I can still "sort of" balance one-footed. Here, I'm clearly in the early stages. That said, I'm not graceful, but I never was.

Interestingly enough, my left foot changed 3 years after my left hand. My right hand was 3 years after that. Slowly my right foot is in the game. My head kind of shakes, too. However, I can still "think" my tremors stop for a few seconds or so at a time.

Middle and late stage Parkinson's

I know what happens in the middle stage, but for people who are just getting started (and me), the above game and a few other pointers are enough. Essentially, the Cliff Notes are that people lose independence as things slow down more.

In the last 2 stages, PwP lose more independence as physical and mental effects may arise. I know that's vague. But the focus, in the beginning, is to establish a life-change-acceptance game, a la Kubler-Ross.

Advice for the newly diagnosed

Recently, a friend asked me for advice because a relative of a friend was, unfortunately, admitted to the "club none of us want to belong to."

I probed with a few questions about tremor, dystonia, dyskinesia, gait, and bradykinesia to get a sense of where to start. Some symptoms, like anxiety and constipation, are a little personal, so it's always good to start out embarrassment-free.

For me, I know what the first days with a "diagnosis tag" were like. I want to focus on this quick advice that gets me through:

It's OK to know where the condition may go. But try to focus on the current stage and the next scale. When your status changes, as it may at any time, you need to be ready. But don't get too far ahead, but don't think about what may not be. It can only hurt the ball club.

Don't watch too many videos. You'll see places you may not go. Getting used to Parkinson's symptoms is like getting into a cold swimming pool. Baby steps. Besides, video can be too much too soon.

"Live life out loud," as French author, Émile Zola said. Find people to live out loud with while you can. Be open with them as you transition to new interests.

Stay loose with exercise. Engage in any form of exercise that you feel you can safely do. Mentally stimulate yourself, too. It does a body good.

Find a doctor you can relate to and work together.

Tell Parkinson's you might have it, but it doesn't have you. Get all stoic on your situation.

Facing the diagnosis

I had a friend who changed her status. We'll call her XYZ. Well, XYZ has a similar neurological condition to Parkinson's. We'll call that ABC. At 23 years old, XYZ found out she has ABC.

Since my little plan above isn't a one size fits all, I can't tell her to pick up a copy of Epictetus, even if it works for me. Sure, it can work, but I've had over 45 years of figuring out my deal. She's a thoughtful person, but I don't see her going all ancient Greek wisdom.

Besides, what good is it to tell another person all that one-line mumbo jumbo? Sometimes I'd just like to sleep through a lot of the blahs of Parkinson's disease and its moments.

Yes, in quotes, philosophy and theology do work. But when it comes to a physical person you know and want the best for, it's all about empathy first. Sometime later you can find ways to make acceptance happen. And that's before fighting back can even occur.

Here, the plan for status change is to know what level you're at, enjoy life, get stoic, find direction, seek help, and find support. Even this goes awry because neurological stuff isn't easy.

The sad reality of the condition

Parkinson's, frankly, is a lousy horse pill to swallow. There has to be a sense of easing into and finding comfort when facing a diagnosis. Here are the ugly truths of the condition:

  1. There is no cure.
  2. There are ways to help and delay, but this disease is going to progress in time, and it plays some mean tricks when it does.
  3. This raw deal has lots of conditions that come with it. They suck, too.
  4. You know how you used to be able to go all Type A on things? Forget about it.
  5. Remember how you liked your independence? See above.
  6.  Many of those things you used to like to do... see #4 for many of them.
  7. There are times you're going to feel lousy. Now find a way to vent your feelings and not hurt others.
  8. There is no reason why you have this. It's just bad luck to work around. Deal with it.
  9. You get to live since this isn't going to kill you, but then again, an effect of it might, if that makes sense.

Connecting with others

Fortunately, XYZ has the support and a significant other in her life. He gets what he can of her status while they both figure it out. But she's young and scared. And there are so many what-ifs. Thus, the only response is pure empathy to a nightmare situation.

There's no one out here with a simple solution. As she says, it could be worse. But why should it be? Where's lasting help in the dark moments to uncloud the skies and bring joy (or at least numbness) when it's all too real?

The best we can do is help someone clean up after the avalanche of a diagnosis, brush off, and push forward. There, there. This togetherness, in its many forms, is what we fellow survivors can offer each other. Without it, our pain is just our pain.

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