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Thanks for understanding Lou…

Hi Jean, no problem, I’d forgotten about that stupid postcard! I certainly agree it’s better to restrict links to PD-pertinent ones.

I’d like to know for curiosity’s sake and I think it would be great if finding this out helped eliminate PD, but since I know that no one knows, I really don’t think about it much.

Hi Lou, does finding an answer matter to you, or have you accepted that PD was just your lot in life?

I played clarinet and guitar and gave them up due to frustration.

Here’s a link to what I used to do: http://louhevly.com/music/

hi Lou, thanks for sharing that.  i cannot approve your post since your URL goes to a page with a link to The Gutter People which has an obscenity on the photo :-(.  Typically, the only links within a response we can approve are from known PD  and or medical/health websites.

Sometimes I feel spacey and out to lunch, but I dont think I have that look just yet..

Plugging along says it well. What instrument did you play?  I tried to take up ukulele but quit since it was too frustrating.  I wrote an article about that experience:

My PD Frustration Consists of More Than Only Symptoms and Treatments

No, no bad days, thank heavens. Just plugging along. The worst so far is that I’ve had to give up playing music

Then again, all my friends are in their 60s now, including some much more hard-living folks than me, and I’m the only one with PD.

My vote is “luck of the draw”.

Another thing I just thought of: I definitely get a spaced out look on my face sometimes and it looks to others like I’m “out to lunch, lights on but no one’s home”. And people can think they’re boring you when all you think is that you’re listening normally.

Thank you Lou for sharing your regimen.  I agree, there are so many things we may try in addition to meds, it is hard to say what is working and what is not.  I am hesitant to stop taking any of my supplements in fear that I might get worse.  I too try to watch my sugar intake,although I am addicted and take a multitude of supplements.  That vib…[Read more]

May be I’m wrong, but I think it’s not so difficult to assess the progression of Parkinson. If you really want to know it, there is the UPDRS scale (Unified Parkinson Disease Rating Scale), that you can do at intervals of time and you can almost complete on your own. Apart from that, you can invent some “proxies” to have some answers . I…[Read more]

Very slowly, maybe because I’m taking:

Vitamins C, D and a B complex, CoQ-10, Citicollina, Omega-3 and lots of cardamom. This apart from the Azilecte, Sinemet and Mirapexin. I’m a pescatarian and avoid refined sugar. There’s no way of knowing how I’d be if I weren’t doing all this, but I thought I’d mention it.
There’s a nifty tool on GooglePlay…[Read more]

Thank  you Lou for your response.  People look at me and say I dont look like I have PD since I do not have tremors.  They have no idea how hard it can be for me to get dressed or how I feel internally, PD is not all about just tremors and I have to constantly educate people.

The question I find most difficult is “How long have you had PD?” Well, occasional tremors since 2011-12, I lost my sense of smell in 2007, and I was definitively diagnosed with PD after a DaTscan in 2015.