Posted by: PD Warrior | February 13, 2016

I’m So Tired…

All my life I have always taken pride in being different from everyone else. In fact, I despise being predictable. Yet I find, at least in some ways, that is exactly what Parkinson’s Disease has made me. Well, aside from the fact I actually have PD, that is.

Most people who don’t know me, don’t even realize I have PD. It is, after all, a disease for old people right? You know…it makes them shake…

And that is where I become unpredictably predictable.

First of all, there is oh so much more to the disease than “the shakes.” Although the most visible aspect of the disease are those annoying tremors, there is much more to it than that. In fact here is a list of things that most people who don’t have the disease don’t realize:

  • Loss of the sense of smell: One of the biggest symptoms of PD is a diminishing, and for some people total loss, of the sense of smell. Almost all of the Parkies I have come to know through the years have complained of this. In fact, studies have shown it is one of the earliest symptoms of the disease, often appearing months and/or years before any other symptoms. As for me? My nose has been shot for years, and although I can’t tell exactly when I noticed it, my sense of smell did fade well before I noticed any other symptoms. It is some thing that I would have never connected to the disease if I hand’t started researching things after being diagnosed. Turns out, those that are in the know, know the nose knows…or something like that.
  • Difficulty rolling over in bed: Or, as I like to call it, the “Turtle, Turtle” syndrome. I was diagnosed with Parkinson’s in my late 30’s, but have had trouble rolling over in bed since my late 20’s, especially when trying to roll from my back to my side or stomach. The muscles just don’t want to move, and in some cases it actually hurt to move in that direction. Most people with Parkinson’s, myself included, initially attribute this to signs of aging and treat it as something they will just have to live with. Myself, I thought it had something to do with a back injury I had during my teens. As it turns out, this is another “early sign” of PD, often appearing before the dreaded “shakes.”
  • Pain: Yes, Parkinson’s can be painful, and I’m not just talking about the emotional pain that comes with having a progressive neurological disease. I’m talking about physical pain. Something that I never knew, even with my training as a Registered Nurse, came with PD. That is something I had to find out the hard way. Some of my fellow Parkies describe it as an arthritic pain, some of them describe it as a “burning” muscular pain. As for me…sometimes it’s an arthritic pain, sometimes it’s a burning pain. And sometimes, late at night, all the muscles in my legs will contract at the same time. Hard! And that, hurts like the devil!
  • Young Onset: That’s right boys and girls, Parkinson’s disease isn’t just for old people anymore! To me, that is one of the most annoying stereotypes about PD. People think that I can’t possibly have it because I am too young. Well, guess what? You’re wrong! I can understand why people used to think that way. But as research has progressed, and more and more has been discovered about PD, it’s become very obvious that Young Onset Parkinson’s does exist. And with the advances of technology, i.e. computers and the internet for research and education (if it’s on Facebook it must be true) there is really no excuse for this myth to be perpetuated any longer. Especially amongst physicians – the most annoying comment I ever heard came from a doctor in my local emergency room where I was being examined. The physician threw the curtain back, with my chart in his hand and started screaming at me, “Why do you have Parkinson’s disease?”  He seriously asksd me that, and then went on to say “you only shake because it’s aside affect of your medications. You don’t have Parkinson’s!” Guess what doc? You’re putting the cart before the horse. I didn’t start taking that medication until 2 years after I was diagnosed with PD. So shame on you for being so assuming and ignorant!
  • Sleep disorders: I have known for years that PD has it’s own set of sleep disorders. Again, that’s something that isn’t common knowledge, and I have to admit I probably wouldn’t have known anything about it if I didn’t have it myself. Parkinson’s related sleep disorders run the gamut from insomnia to sleep apnea. And again, I have both. I knew about the insomnia, but what I didn’t know until reading a research article today, (Parkinson’s Disease Linked to Sleep Disorders, Sleep Disturbances) was that the sleep apnea was also part of the Parkinson’s symptoms. The good news is that the sleep disorders are usually easily treatable. My CPAP machine and a nightly dose of melatonin have become my BFF’s.

In closing, all I can say is that, between battling the myths, and dealing with the symptoms myself, I truly am so tired…especially of being predictable when I thought it was just me!

 

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