Lou Hevly

As an English teacher, I take the whole week off! My wife is off to Tibet, but I’m staying home to relax and work on my next book, which is <b>La vida amb la malaltia de Parkinson</b> (Life With Parkinson’s).

Popcorn! With Pink Lady apples, garlic olives and aged manchego cheese!

@Jean: Can you tell, I don’t like taking drugs? 🙂

I’m with you… except for sometimes 🙂

Well, another question might be “What are the proper criteria for taking a drug for ailments?” For example, in my case, I have serious Restless Leg Syndrome. I’m now taking Sinemet plus and Mirapexin, but I know that I’m running the risk of getting dystonia from the Sinemet and edema from the Mirapexin. But without these drugs I would now be…[Read more]

Yes, I often sleep less than two hours a night: midnight til 2 sleeping, from 2-4am trying to get back to sleep (strenuous exercise and/or hot showers), then if I can’t, I get up, have breakfast and start working, and can usually take a good nap from 8-9am.

I’ve always been somewhat of an insomniac, but with PD it’s more consistent. I’ve tried…[Read more]

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.

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/

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.

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]

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.

So far, aside from mild tremor when I hold a coffee cup or spoon, my only symptom is Restless Leg Syndrome, which Mirapexin seems to have cured. I feel great.

For me I’d guess luck of the draw; if there’s a rational explanation, I don’t know. Smoked a lot of pot when I was sowing my wild oats, but that stopped at 30 and I didn’t have PD symptoms till 63-64.

Hi Ally, I haven’t been here long but it’s a good place. Glad to be here.

@Jean: “i think it is also important to clik the “Notify me of follow-up replies via email” box.”

Good idea!

No, no fatigue ever. But who knows how I’d be now if I hadn’t taken B12 and D?
I should mention that so far I’ve been “lucky”, in that I have very few movement problems. I can still run up stairs, touch type, write legibly and have minimal tremor. My worst thing is restless legs, for which an agonist so far seems to be the solution.

Evaluating…[Read more]

«1. clik on your Profile on the right side

2. Then clik on NOTIFICATIONS»

Doing this I get the “mindfulness” posting reference, but not this one (questions about forums) nor any of the others. Clicking the Activity button does work!

Thanks!

Upon logging in, where do I go to find out if anyone has posted further comments to a forum I’ve posted to?