Saturday, October 24, 2009

Things I wish I knew when I was diagnosed,

There are so many things about this disease that I wish I had really, really understood when I was first diagnosed. I mean, I read about these things, but I didn't fully grasp the concepts. Here's a partial list of concepts and advice that I wish I had listened to a little better:

1.) Parkinson's is TRULY different for different people. There really is no point in comparing your symptoms to someone else's because everyone gets their own personal version of the disease.

2.) Symptoms come and symptoms go, but true Parkinson's symptoms are GRADUAL. Anything that changes very quickly (within the course of a few days or a week) is probably NOT Parkinson's progression. If you experience a very sudden increase in Parkinson's symptoms, it usually means that you have some underlying health problem, like an infection or a virus or something, or perhaps some emotional stress. If this lasts more than a few weeks, you might want to discuss the possibility of something other than Parkinson's with your neuro. The mills of Parkinson's grind slowly, but they grind exceedingly small.

3.) Sometimes, you feel awful, but everyone thinks you're fine. We get very, very good at masking symptoms, especially at first. People don't understand what it costs you to look "normal", so try not to get mad when someone says "but you can't have Parkinson's; you look so well!". Take it as a compliment.

4.) It will make your life infinitely easier if you start learning to ask for and accept help now, because you ARE going to need help at some point. However; DON'T ask for trouble. If you feel well enough to go to work, go to work. If you feel well enough to dance, dance. Don't assume that a Parkinson's diagnosis means that you have to behave a certain way. Try to honestly evaluate your capabilities on a constant basis, and don't give up something you love if you don't have to.

5.) Listen to what others say. Often, you are not aware of the "quirks" that others see. One of the things that sent me to the doctor in the first place was the fact that my co-workers had begun to tease me about my "robot walk".

6.) Don't worry; be happy. I know; easier said than done, but try, try, try to keep a positive attitude. Do whatever it takes to keep your rose-colored glasses on. Do something positive: join a support group, participate in fundraising events and/or clinical trials and studies, DONATE YOUR BRAIN. Brain dissection is still the only sure way to diagnose most neurological disorders, and provides an absolutely invaluable source of information to researchers. Healthy brains are needed for comparison, too, so encourage your friends and family to donate their brains as well.

7.) Communicate. Tell others about your condition. When you are not feeling well, let people know. Take advantage of opportunities to educate others about PD.

8.) Most important of all: helping others helps you, too. At least, that's what I have found. Donate blood, become a bone marrow donor, volunteer in your community. Remember that there are lots of people out there who are worse off than you are, and if you can help them, it will empower you and remind you that you still have strength, wisdom and courage to share.

Friday, October 23, 2009

O.K.; maybe I spoke too soon

I think maybe I did push myself a little too far last weekend. All this week I've been having major "wearing off" problems; I can't even do my crochet after around 8:30 to 9:00 at night. I'm so stiff in the mornings, too. It's hard to even walk. My meds don't even seem to kick in until after 8:00 a.m., and I take my first dose at 5:00 - 5:30 a.m.!

Well, I'll wait a week or so and then call my neuro and see if there's a medication adjustment I can make. Ughh.

In the meantime, our son has brought home a whole bunch of friends this weekend, so I'm not going to be able to relax much. Maybe that's a good thing. We'll see...

Tuesday, October 20, 2009

Sometimes I surprise myself


Whew! What a wonderful trip to Disneyland we had! It's very fun, but very tiring, and here's a phenomenon I found amazing; I get stronger the more I push myself. The first day, I had to use my cane. I was exhausted and having problems with pain and balance. The second day, I started out with my cane, but put it away about halfway through the day. The third day, I didn't even take my cane out of the backpack!

What does this mean? I guess it means that I need to push my body to the limit if I want the limit to expand.

Thursday, October 15, 2009

I'm in Disneyland!

Woo Hoo! Bob and I are in Disneyland! Well, to be precise, we're at our hotel across the street from Disneyland, but we'll be in the park tomorrow morning. We are finally celebrating our 24th wedding anniversary (which was in September). I'm so excited! I love this place! More to follow...

Sunday, October 11, 2009

Bummer; we lost.

Today, the 49ers lost to Atlanta 45 to 10. This is all I have to say about that:

On San Francisco Bay today the sun was shining bright,
But not for Forty-Niners fans, the “stick” was dark as night.
The Falcons clipped our wings today and it was more than luck,
Right now, I’m mad enough to say “THE FORTY NINERS SUCK”!

Sorry; had to get that off my chest...

Tuesday, October 6, 2009


New symptoms are creeping up on me. I was feeling like I was being stalked by the stupid disease again, so I wrote this:
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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.