Andrew L.

Hi Christine: Exercising is my new job as well. Am thinking pickle ball is probably good on many levels. Lot of fast movements, eye hand coordination , and tracking the ball as it flies from side to side , esp with better players. Not too happy with my ability to transition from power to touch game, trying not to be too self critical. Yesterday…[Read more]

Hi Jeffrey: Nice to find a fellow traveler. I also love exercise, it is the only time that I feel prolonged periods of something resembling “normal”. I guess I am trying to figure out when and how to incorporate exercise “off days”, since I feel so much worse doing nothing. Do you take exercise days off? As for yoga- it is not a cure all for me,…[Read more]

Also certain antidepressants help with sleep , if depression is an issue. Again a question for doc.

Here are some things others recommended to me and/or have used myself.

First off agree with everything Jean wrote.

Would add

1)insight timer meditation app with help to induce relaxation state. Thousands of guided meditations on it.

2) Try to optimize night time dopamine levels with meds taken before bed and/ or in  middle of night (speak to…[Read more]

I eat nuts, organic only. Same with all veggies and fruits. Not a place to save money imho.

First off, congrats to everyone here who does any form of exercise. Period.  All of us are challenged, some much more than others. For me, exercise is medicine.  Literally.  Like everyone here I have this bizarre (can use other, more inappropriate but accurate adjectives but don’t want to get kicked out) disease and there are times I feel ab…[Read more]

Agreed!

Good work Jean and Jo! How much exercise I can do seems to be directly correlated with amount of sleep I get. 2 nights ago was a relatively rare good nite, so yesterday did a lot. Last night didn’t sleep too well. Anyway today pushed myself to do  1 hour Rock steady boxing class, moderately difficult ( decent aerobic workout, would call it a…[Read more]

1 hour to work if on empty stomach, if with food meds often don’t work nearly as well. Exercise is also medicine for me;  I feel best (sometimes close to normal) when taking meds and then exercising . I find that herbal tea and indica based CBD (sublingual) helps a little as well when body can’t exercise anymore.

Mike: I had been taking 1/2 tab  carb/levo 25/125 at bedtime (around 1130) and 1/2 at a 2 am (when I wake up like clockwork) + 10 mg CBD sublingual. Problem is 2am dose, don’t go back to sleep for hours, though CBD does relax me. Think I am going to try upping the bedtime dose to 1 tab  and will add in some melatonin (3mcg sounds good). Will k…[Read more]

That is super helpful Mike, thanks

No worries Mike.  Am sure have done the same thing, prob in my last post.  More important to get your point/info across imo. Glad we are networking 🙂

I am sorry that you are in NY and do not have access to this  :(, tho would think/hope it is coming…

Am wondering if I should post my experience in the supplement thread, wish there were more people I could network with who have thoughts on this…

Hi Jean:

I am no wild eyed proponent of any supplement or treatment (including cannabis) not proven to help. Unfortunately , I think the vast majority of treatments /supplements for PD are completely bogus. I am hesitant to say “all” because I still hope. But I think the reality is that (almost?)  all of these supplements / pseudo treatments  a…[Read more]

Hi Mike: Timed release C/L seems like a good idea for the night.  Have been taking a 2 am dose every nite (wake up spontaneously) My neuro didn’t like it for some reason, will ask him again. Have yet to try melatonin. Took it years ago and it worked for a few months and then was like a placebo. Am open to trying again…good questions for me to…[Read more]

Have been gathering info on this, my impressions are as follows…  First off, it seems to me that most neurologists (like other docs) know little, which is understandable for those trained in the scientific method (which is all doctors in the US), as data from large controlled studies is lacking. So as far as medical science goes, at best this…[Read more]

Mike: Thanks for sharing thoughts on T replacement. Interesting , they used to think it was a no go for men with high risk of prostate cancer, newest studies (in last 2 years) now show no increased risk. Will see what my uro thinks. Since have family history of pr cancer, never got t levels checked, now will do it, tho think that is not an issue…[Read more]