Tuesday, February 9, 2010

What does Parkinson's feel like...revisited

This is an update to a previous post. Symptoms have progressed, and I thought I'd share my experience. Even though PD is different for everyone, I remember when I was newly diagnosed, I found the personal experiences of other people very helpful.

I'm still in the "honeymoon" phase of treatment. The medications are still working GREAT for me (although I've had to add a few, and adjust the dosage of others), so none of my symptoms are particularly severe, usually. Still, sometimes they make life a little difficult. Here's a partial list:

1.) Stiffness/Rigidity. This is symptom has now become public enemy number 1 for me. I feel like I can barely move in the morning or in the evening after my meds wear off, and sometimes when I get a little "wearing off" effect during the day. I'm sometimes surprised that I can actually move; it seems to take so much effort. There are times when I actually break out in a sweat because of the effort to put on my coat or pick up a book. I'll be sitting at my desk at work, and suddenly my arms feel like they have heavy weights on them. I can't make the muscles relax, either, which can cause some aches and pains. This seems to be getting better with the addition of the Amantadine.

2.) Slowness. This goes along with the muscle rigidity. No matter how hard I try, there are sometimes some movements that I can't perform fast enough. It's changeable, too, so I don't know from moment to moment whether it will be a problem or not.

3.) Fatigue. Fatigue is something I've learned to live with. I just have to plan ahead and be aware that I may not be able to participate in everything the way I used to. I may have to take a break, and find some time to rest. I may have to go home a little earlier than I used to. I have to prioritize; is it more important to get the laundry and the dishes done, or to pick up the living room? I can't do both today. However, learning to prioritize is a plus, as far as I'm concerned!

4.) Insomnia. I can't sleep for more than 4 - 6 hours at a stretch no matter what I do or what I take. I'm not particularly sleepy during the day, though, so maybe it doesn't matter.

5.) Freezing and Falling. I have to remind myself to be careful and not try to change directions too quickly while I'm walking. Sometimes, when I do that, one or both feet get "stuck" to the floor and can cause me to lose my balance and even fall.

6.) Dyskinesia. It's a very weird feeling when you notice your body moving without your telling it to. So far, I don't have a very big problem with this, but it happens. I was sitting in a meeting once, unaware that my head was moving side to side until someone wondered aloud why I was shaking my head "no"!

7.) Dystonia. Nasty! Like the worst muscle cramp you've ever had, but....not. I can't really explain it, but it just feels different from a regular muscle cramp. For me, my big toe goes up, and the other toes strain down until it's very painful. The only way to stop it is to hold the offending foot in my hands, which is a bit of a stretch. This symptom is getting better, though.

8.) Tremor. For me, tremor isn't a big deal, except when I'm trying to do fine work. It usually only happens when I'm in a "wearing off" period.

There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates.

There are also a lot of things that I've GAINED because of PD though!

1 comment:

Bob Kuhn said...

Thanks for sharing. Hang in there and stay positive. We are right with you!!


About Me

My photo
I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.