Dealing with the degeneration of a degenerating disease
There's a reason they call it a degenerative disease. It gets worse over time. The tough thing is as you learn to deal with one thing, something else pops up. Then you have to figure out how to deal with that.
I'm coming up on the third anniversary of being diagnosed with Parkinson's Disease. There were subtle signs a year or two before that so it may be as long as five years with PD.
The first couple of years were somewhat easy physically but mentally tough. I had many more good days than bad ones. The good ones give you false hope. Everything seems fine for a few days, a week..maybe two and then comes trouble. Balance issues, shakiness, back pain, leg pain, exhaustion. You don't see it coming. It messes with you head as much as your body. Sadness...depression. My therapist had a lot of work to do in year one,,,and so did I.
Year two had the same symptoms. Not much changed physically. Yeah, I needed some help occasionally pouring a drink. Yeah, food ended up on my clothes regularly, but that seemed funny. Lots of jokes about needing new clothes and how I should be buying stock in Shout.
I felt I was making progress. I didn't need my PD meds. The symptoms didn't get worse. The occasional bad day was still there but I had learned how to handle them. A lot less sadness and depression.
As we moved towards another anniversary with this crap, things were looking up. At least that's what I thought. Parkinson's has a way of changing your thinking and fast.
About a month ago I noticed some physical changes. It started with the writing of my blog. I always write in longhand before typing them up and publishing. It gives me an extra chance to do some editing plus it helps with my hand dexterity. It was one of my favorite parts of the writing process and I couldn't steady my hands enough to do it. Damn!
Btw...I'm writing this in longhand and it's now past the two hour mark with another to go. Damn! Damn!
Since then there were a couple of incidents where I couldn't use tongs to put a hot dog in a bun, followed by the spilling of a drink that made a huge mess. The person I was with didn't say a word but I knew something was up.
She did notice that I wasn't eating much and that's another thing. My appetite is gone. I've had days where it's 8:00 pm, I haven't had a thing to eat all day, and am still not hungry. I've been forcing myself to eat.
Combine these with a couple of days in bed with exhaustion and now telling people I wasn't feeling well (which I never did before) and I thought maybe I should do something about this.
The final sign was telling my daughter I wasn't feeling well enough to go to her wedding shower. She said it was okay, but I knew it wasn't. I sucked it up like a big boy and went to the shower. Then I went home and napped for a few hours. If a wedding shower is taxing enough to send you to bed, you need to see it as a sign to get some help.
I called my neurologist and was told the next appointment was in four months. OY!!! OMFG OY!
I expected this and thought it might even be longer. I've been through this process before and know that you should keep calling and hope there are cancellations. I called my primary physician and got in to see him the next day. We're working on adjusting some things and while it's not quite all great right now, it's getting there...at least until next time.
So what's the point of this long winded woe is me tale?
I'm not quite sure. I've known for a long time that this is the way this disease works. Physically, while it seems like a setback, it's really not. It's just the way Parkinson's is and how it's going to be going forward. I'm a long way from checking out. The good news is mentally I'm fine..at least about this. I'm not freaking out. I've done enough research and have enough experience that this doesn't faze me too much. Had this happened two years ago, I'm not sure what I would have done. Therapy really does help!
For people reading this with Parkinson's or any other degenerative disease, especially if you're newly diagnosed, learn as much as you can about your disease and your body. Don't be afraid to ask questions. Don't be afraid to get help when you need it. It may seem to be the end of the world and in a way it is. It's the end of the way your world used to be, but that doesn't mean there's not a lot of good/great things to come.
Remember, the more things change...the more things change.
If you want more stories about Parkinson's here's a bunch from the last two Parkinson's Awareness Months.
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