Saturday, January 31, 2009

Positive Things; what are some of the GOOD things that PD has brought me?

As promised, I thought I'd list some of the things I've gained as a result of having Parkinson's:

A sense of purpose. I feel that I have a cause now, maybe a small inkling of what God has in mind for me. I have something to work towards, and that keeps me going. I've never really had this kind of direction before. Doing positive things to help myself and others and working towards a goal makes life more meaningful.

An appreciation for little things in life. More and more, I find myself noticing and appreciating little things like the wind in the trees, the way the squirrels chase each other and tease the dog, flowers growing where they're not supposed to (instead of in the planter box!), the way it feels to walk as fast as I can just for the joy of walking.

Prioritization. I'm beginning to understand, for the first time in my life, that my priorities need to be rearranged. For years, I put work first. I paid lip service to putting family first or putting my needs first, but when it came down to it, it was work all the way. I let my job define me as a person; if I failed at work, I failed at life. Now that I've had to face the realization that I can't do my job as well as I used to, I'm starting to let go a little. This is a slow process, and I'm still working on it, but as they say, the first step is admitting you have a problem!

Less self consciousness. When I was first diagnosed, I worried a lot about people staring at me or judging me based on my symptoms. Now, I've found that most people don't notice anything; most of the time people aren't looking at me at all. I've also come around to feeling like I don't care what they think anyway; if they want to stare, I'll stare back and smile! If they are bold enough to ask what's wrong (as has happened on a couple of occasions) I treat it as an educational opportunity. Spreading the word about PD is a good thing, right? It's kind of freeing; I just don't care what I look like as much as I used to. If my makeup isn't perfect (or isn't on at all), or I haven't bothered to do anything with my hair except brush it, I think "Hey! I have Parkinson's and I'm menopausal; what do they want?"

Friends. I've never had so many friends in my life; friends that share personal thoughts and feelings, friends that call and ask how I'm doing, friends that keep track of one another and get concerned if one of the circle hasn't called or been on line in a while. It's wonderful to see all these beautiful people drawn together to face adversity together. I'm so happy to be a part of it!

There are other things, too but I can't think right now. Need coffee.......

Saturday, January 10, 2009

More on "My Father, My Brother and Me"

Today, at my support group meeting, we saw the first 20 minutes of the documentary "My Father, My Brother and Me". A very nice young lady from our local PBS station, KQED, brought the film and introduced it to us. Since the film is not due to air until February 3rd, we were only allowed to see the first 20 minutes, but those 20 minutes were powerful. I actually found that I had tears rolling down my cheeks a couple of times. I think this film will help people understand what Parkinson's is really like and what it's really about; what it means for patients and their loved ones. This is what we need, my friends.... exposure, education, insight.

Thursday, January 8, 2009

New PD Documentary Coming February 3rd!!!

As you can see, I have posted the trailer for the movie "My Father, My Brother and Me" which is a documentary due to air on PBS on February 3rd. It is the story of Dave Iverson, who discovered that he had Parkinson's after seeing both his father and his brother suffer with it. I'm very excited about this movie; I think it's going to be a big awareness booster for the PD community. I am very fortunate in that my support group has received permission to air the movie at our regular meeting on Saturday. Here is a link to Mr. Iverson's site:

http://www.pbs.org/wgbh/pages/frontline/parkinsons/

Take a look! This should be good.

Tuesday, January 6, 2009

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!
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About Me

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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.