Wednesday, January 26, 2011

Help for Parkinson's Documentary "Ride With Larry"

There's only a few days left for the folks at "Ride With Larry" to raise funds (February 1st is the cutoff date). Thankfully, they managed to get the $50K they needed in order to produce the film, but just barely. They need all the help they can get; I really think this project will raise a lot of awareness. From their Facebook page, here's a list of what they plan to do with the money

1. Film Larry in South Dakota this February to document his winter training & begin his video blogs
2. Travel to Europe to film two very important research studies
3. Interview geneticists studying Parkinson's and collecting 10,000 genetic samples of Parkinson's patients
4. Interview Larry's neurosurgeon in San Francisco
5. Travel to states such as Ohio, Georgia, New York, Connecticut and more to film doctors and researchers that are working on curing Parkinson's and improving lives
6. Find the youngest person with Parkinson's
7. Travel to South Dakota this May & June to follow Larry as he rides across his state
8. Many more interviews with experts, spokespersons, and patients in the Parkinson's field


Here's a link to the donation page:

https://www.kickstarter.com/projects/ridewithlarry/ride-with-larry-a-documentary-film?ref=users

Saturday, January 22, 2011

New documentary about living with Parkinson's: Ride With Larry

This is inspirational, and I think, important to the Parkinson's community. Larry Smith is a PD patient who is planning to ride his special recumbent tricycle 280 miles this summer to spread information and awareness about Parkinson's. A documentary movie is being made about it, well at least they're TRYING to make a movie. They have 10 days left to raise the rest of the funds they need to make the movie a reality.

Please take a moment to look at the movie trailer (there is a link at the bottom of this page) and/or visit the web site:

Friday, January 21, 2011

PD Meds: Is more better?

I've recently become more aware of the thin line we PD patients walk, balancing ourselves carefully. On the one side, Parkinson's symptoms: you know them, you hate them, they interfere with your life, they make it almost impossible to do the things you love, they keep getting worse. On the other side, medication side effects: dyskinesia, hallucinations, insomnia, constipation, daytime sleepiness, etc., etc. What each patient must do, with their doctor's help, is to find that perfect balance, even though the situation is constantly changing. It's like trying to balance on a rolling log.

I went to see my neurologist recently, to discuss my worsening symptoms, and he suggested just a small change, a little "tweak" to my medication. I added ONE HALF of a 100mg Sinemet tablet in the morning. You wouldn't think it would make that much difference, but it really has! I feel fantastic; no more hideous mornings when the meds just don't kick in or unexpected "wearing off" in the afternoons (well not too often, anyway). It's amazing!

I guess it just goes to show, in my case, anyway, that small changes are probably best, and it may take some patience on my part, but it's worth it! Since the symptoms are constantly changing, the treatments need to be adjusted as well, but you don't want to upset that delicate balance on the rolling log and fall in the river. It might take a while to climb out...

Saturday, January 15, 2011

Good news on the diagnosis front

It looks like someone has finally come up with a way to clinically diagnose Parkinson's Disease while the patient is still alive. The FDA has approved "DaTscan", an imaging technique which can show abnormalities in the brain which are indicative of Parkinson's Disease. The article came from the Michael J Fox Foundation web site (see link on the right side of the page).

Why is this important? For one thing, the clinical trials and studies for Parkinson's research will be a lot more fruitful. Right now, no one can be absolutely sure that the patient in question actually has PD and not some other disorder. Now, the data collected will be of a much higher quality. Also, of course, patients will get appropriate treatment sooner.

Aside from all that, I don't know about anyone else, but I think that one of the worst things is not knowing. You know there's something wrong, but not what it is, or how to go about treating it. Now we'll know. I think this is a very good thing.
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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.