Thursday, July 16, 2009

Making excuses; why should I?

Bob and I went to our ballroom dance class last night, and I found myself in the position of having to explain myself. See, I can only dance for about an hour, and then my legs start to shake and I have trouble moving them (especially the left one). I also get muscle cramps in my feet, and now I'm starting to have "freezing" problems, too, where one leg just doesn't move when the rest of the body does, so I slip and/or fall.

Last night, after a wonderful hour of learning to Samba (a really fun dance, by the way), I slipped a couple of times and almost fell, and since my feet had cramped up and I was having trouble moving anyway, I decided to call it a night. Well, several people tried to get me to keep going; they thought I was just giving up too soon, I guess. I had to explain that I have Parkinson's and I just can't keep going as long as they can. That was good enough for most of the folks, but a couple of the guys clearly didn't get it. They kept trying to encourage me to try again. I know they were trying to help, but it made me feel so "wussy"!

The problem is that I've always prided myself on not being a quitter. I may not be the best at what I'm trying to do, but I stick with it. So, when someone implies that I'm not trying hard enough, it hurts. I don't think that most people understand that it's not just a question of strength and determination. I've got plenty of strength and determination, thank you very much. I have to respect my limits, though, especially if it becomes a safety issue.

I guess next time I should say something like "Gee, I'd love to be able to keep going, but if I do, I'm likely to fall, and that wouldn't be a pretty sight. Besides, I might just take you with me!" That would get them!

Sunday, July 12, 2009

Fun at the Flea Market, and a surprise gift

Our tiny little town (official population 750, actual population probably about 1,000) had its annual flea market today, and I had a booth there. I donned my "Parkie Princess" t-shirt, and hung up the Team Fox banner I had designed. I proudly set out all the beaded jewelry I've made over the last few months, plus some gently used clothing, and set up shop in anticipation of making some money for the Michael J. Fox Foundation.

Here's my booth:

Well, it was a flea market, and not too many people were interested in buying NEW beaded jewelry; they were looking for real deals on used things. I was feeling discouraged. Then, this lovely older woman showed up, and poked around the booth for a little while, then asked me if she could take one of the informational leaflets I had printed out from the Michael J. Fox Foundation. Of course, I replied "Please, of course! Take one!", so she did and wandered off.
A while later, she came back. She said to me "I just wanted to thank you for doing this; my husband has been diagnosed with Parkinson's, and I've learned so much about it just from reading this". Well, she made my day! We chatted for a bit, and she told me that she herself had epilepsy, for which she has had a surgery similar to DBS. She also said that she thinks her husband is in denial, and she's concerned because she's heard that the longer you wait to start medication, the less effective it is. I told her that the latest research says that that's not necessarily so, and in any case it varies widely from patient to patient.
To me, this meeting was an unexpected gift. I looked at this beautiful lady, clearly so strong and courageous, and I thought "In some small way, I have helped her today". Suddenly, I didn't care that I hadn't made a lot of money at the flea market. I made something more important. I made a difference.

Tuesday, July 7, 2009

Saw the doctor yesterday...

It seems that visits with my doctors have become milestones for me. That being the case, yesterday was a great milestone in my life. I had my regular appointment with my neurologist, and he confirmed my suspicions: I'm doing FANTASTIC!! He says you can't even tell I have Parkinson's disease. I can tell, of course, but the way that I look on the outside is a reflection of how good I'm feeling on the inside. I'm walking well, I'm able to do everything I want to do (though maybe not as long as I'd like to do it :-)). I have little or no side effects from the medications to deal with. I'm doing great at work. I sleep well, I eat well; I just can't complain at all, and I don't want to! Heck, I'm taking ballroom dancing lessons once a week and doing o.k. at that, too.

The only thing of any concern is that I've had a couple of "freezing" episodes, one that caused me to fall flat on my face without being able to even bring up my hands to stop me, and one that caused an "almost" fall. The doctor says I need to do more than just be careful; I need to make sure that my path through the house is unobstructed. In other words, I just received a prescription to clean up my house. Yikes. He hasn't seen my house, obviously. I wonder if the insurance company will get me a maid, since it's doctor's orders. Hmmm..... probably not.
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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.