What Does Parkinson's Feel Like?

When I was newly diagnosed, I sure wished that someone could have told me what PD really feels like. I now know that it is different for everyone, and furthermore that a lot of the symptoms are really, really hard to describe. However, I still would have liked to have read or heard more first hand accounts of what it was like. So, I thought I would describe some of my symptoms, in case there's someone out there wondering about it.

Now, I'm in the "honeymoon" phase of treatment. The medications are working GREAT for me, so none of my symptoms are particularly severe. Still, there are symptoms that come and go in different cycles; some within the course of a day, some over days, weeks or months. They are all exacerbated by stress, extremes of heat or cold, and illness of any kind. Here's a partial list:

1.) Fatigue. This is the single most debilitating symptom for me. I'm not talking about sleepiness, here. I'm talking about the feeling that you've spent the day digging ditches. I'm talking about being so tired after doing the dishes that you have to go take a nap. It's not always that bad, thank goodness, but I am always tired. Then there is that feeling of "heaviness" in my arms and legs. Sometimes it feels like gravity has suddenly been turned up, and that when I walk, I'm walking in sand.

2.) Stiffness/Rigidity. This is certainly the most annoying symptom I have. It sometimes feels like I'm slowly being encased in cement or at least heavy plastic. When I'm in bed at night and my meds have worn off, it's particularly bad.

3.) Slowness. This is a very peculiar thing; I go to unscrew the cap of a bottle or deal some cards or something and my fingers simply will not move fast enough. I stare at them and will them to work faster, but nothing happens. Sometimes I actually yell at the offending body part: "hey, you stupid hand, GET MOVING!" It doesn't listen. One of the funniest things that happened to me because of PD is when I tried to teach my grand-niece to juggle. I've always been a pretty good juggler, and it's like riding a bicycle; you never forget how. So, I started juggling and ended up with a beanbag right between the eyes. Tried it again and hit myself in the nose. Oh well; if juggling is the one thing I simply can't do, it could be worse!

4.) Anxiety. I am often on the verge of panic in crowds nowadays. I just can't stand it. I have to repeat over and over to myself that it's o.k.; remember to breathe; no one is going to hurt you.

5.) Restlessness. I can't sit still very long. I get this weird feeling in my legs and sometimes in the rest of my body and I just HAVE to move. That's why I now get up and take a walk a couple of times a day while I'm at work.

6.) Insomnia. I actually am kind of enjoying this one, surprisingly. All my life, I have NOT been a morning person. It used to take me hours to get going, and on the weekends I slept until 11:00 or 12:00. Now, I wake up fully and immediately sometime between 3:00 and 5:00 a.m. every day. I get a lot more time to myself, and I love the quiet mornings. This has limits, of course; I take Ambien when I've had too little sleep for too many nights.

7.) Cognitive problems. I know that doctors say that this doesn't happen until the late stages of the disease, but I swear my thought processes have suffered. I have much less initiative and confidence at work. My memory is AWFUL. I get confused, particularly about where I am sometimes; I turn a corner in a building I've worked in for 25 years, and I suddenly find myself thinking "Where am I?". Sometimes I look at my husband and think "Who is this handsome guy and why is he in my home?". It passes quickly, but it's scary. I have trouble concentrating; I used to love to read, now it's a chore. I also have trouble with parallel processing; I can't do more than one thing at a time. All of this might just be normal aging stuff, though, or perhaps menopause stuff.

8.) Tremor. I almost forgot about this one, because it's the symptom that bothers me least, even though it was the straw that broke the camel's back and brought me to the neurologist in the first place. Mine started in the fingers of my left hand, and it was NOT the classic "pill rolling" tremor at first. It is now, though.

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 and add to the list, I suppose.

There are also a lot of things that I've GAINED because of PD though! I will address those in another post. I need to go make dinner now!