[Andrew L.]

BOB YOU ARE AM INSPIRATION! I played tennis and went to the gym (worked out with weights and on various aerobic machines) most of my adult life. Since the advent of the “fit bit” , rarely have a day with less than 10K steps going back many years. Sometimes looking back I think I might have had this disease for years or even a decade or longer, based on various symptoms I had for years. If I am correct then exercise has really slowed it down. Now only time I actually feel close to completely normal is when I exercise while dopamine is kicking in on a day after I slept at least 5 hours the night before (unfortunately not a given). I probably average a solid 4 hours of varied exercise per day. Outwardly people do not know I have PD (balance actually has improved with my training, since started dopamine no gross outward tremor). My belief is exercise is medicine.

[Andrew L.]

https://parkinsonsnewstoday.com/2019/09/23/blood-pressure-and-prostate-treatment-may-prevent-or-slow-parkinsons-early-study-suggests/

[Andrew L.]

Hi Jean:

From a different forum- https://www.dailystrength.org/group/parkinson-s-disease/discussion/treating-my-wife-with-pd

[Andrew L.]

I was asked by Mary Beth if I ever tried a back brace, not sure where to reply (every time I hit reply there is nowhere to type), don’t find this site to be very easy to navigate…anyway my answer is yes, but I don’t like braces in general as they tend to weaken muscles as the brace does the work your muscles do. So prefer to strengthen muscles if possible which in my case it was.

[Andrew L.]

Might be a useful alternative to a posture brace, uses bio feedback

https://store.uprightpose.com/products/upright-go2

[Andrew L.]

for me- 2 table spoons of organic psyllium cornhusks in my morning smoothie, which also contains mixed organic berries and mixed organic greens and the equiv of 3 glasses of water . Several hard boiled eggs with breakfast (mainly eat the whites, the dogs get the yokes.) Snack on nuts. Stay hydrated. Veggies (sometimes heavy veggies) again with lunch and dinner. Lots of liquids all day including 5 cups of green tea per day and organic tea at night. Seems to work for me. Happy turkey day to all! (not such a happy day if you are a turkey).

[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 did my 30 min with trainer, followed by 1 hour weights (upper and lower body) and then 1/2 hour of aerobics (elliptical and treadmill). Today 3 hours pickle ball. Tomorrow may be a necessity day of rest…(when I told my significant other she was skeptical.) My neuro told me to incorporate rest days, haven’t figured out how to do this and still feel well…

[Andrew L.]

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

[Andrew L.]

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 neurologist about it.)

3) Have found the 3 mcg time release melatonin (made by life extension) to be helpful. Was recommended to me on this site and it worked for me.

4) can consider cannabis sublingual in night. Long story about what to use and which is best.

5) aerobic daytime exercise if possible

6) Limit daytime napping

7) A good massage chair to be used at night as needed, if can afford.

8) Night time herbal teas an hour before bed,  organic and with herbal sleep inducing supplements, perhaps high in certain sleep inducing terpenes.  Best while reading before bed.

Note: none of this is meant as medical advice, just my opinion.

Then there are things like sleep studies, etc. best discussed with doctor if needed. Hope that  helps a little.

 

[Andrew L.]

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

[Andrew L.]

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 absolutely awful, but at age almost 63 am also (oddly) the strongest and most fit that I have been in decades (have been an athlete most of my life.)  I look at my life now as one ongoing rehab project, for better or for worse, and I view exercise as a mandatory survival mechanism. I know that sounds dramatic but it is how I feel.  I take a rare day completely off only when my body completely shuts down and can’t push through it (seems like once every 2 weeks or so, when I start cramping in muscles I didn’t know existed ). Anyway, I do 30 min 3x per week (Tues, Thurs, Sat) of an exercise program (at it for about 6 months) with a trainer (recent college grad with degree in exercise physio) called PD warrior. This program began in Australia and is slowly making its way through Europe. While it is only used by physical therapists in Australia, the exercises are all online and my trainer was willing to learn them (also bought the book). They focus on balance, rapid movements, agility even some cognitive exercises thrown into the routine for good measure.  Plus we have added in a bunch of squats and lunges and cardio to the deal which have made legs quite strong,  All good to prevent falls. Don’t want to fall, don’t want to aspirate.   Have mastered them all and then some, we have ramped the degree of difficulty way up. But only do this 30 minutes a session 3x per week.  I am a lifetime tennis player but have switched to competitive pickle ball as can’t tolerate the heat in Florida  with outdoor tennis anymore (crazy amounts of sweating from Parkinson’s).  Usually play indoor pickle ball 2-3 hours 3x per week, usually good for about 5000-7000 steps on fit bit.  Also stretch every night (a 30 min light hatha yoga routine I learned), is mandatory to ease the stiffness after each day of exercise . So yesterday (Thurs) I did PD warrior with trainer for 30 minutes, then walked / ran 2.5 miles with hills on tread mill 45 minutes, and played 2 hours of competitive pickle ball last night. Have to admit I was very tired after, did mandatory light yoga routine before going to bed, not optional  b/c without it stiff as a board. Today I did back to back Rock steady boxing classes for a few hours, hit it very hard.   Will do mandatory light yoga tonight. Tomorrow I will report on tomorrow.  Hope everyone has a nice (and active! ) weekend!

[Andrew L.]

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 6/10.) Note: instructor wouldn’t be happy, she thinks she is working us harder. Was dragging when I started, but seem to pick up energy as I moved along.  Ate lunch, dopamine wore off, couldn’t take next dose till digested food. So went into gym and did another 45 minutes or so moderate weights, all upper body. My fitness trainer told me yesterday to only lift to the point that I have about 2-3 more reps in the tanks so wouldn’t get too sore. Anyway lifting with dopamine worn off is always fun (not.)  Will probably do about 30 min gentle yoga stretches tonight.

[Andrew L.]

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.

[Andrew L.]

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

[Andrew L.]

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…

[Andrew L.]

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  are mainly supported by charlatans/ greedy people making money off desperate people  with a (so far) incurable, progressive disease. My neuro has term for it, he calls it “medical tourism”. I believe him, I don’t think there is anyone with more knowledgeable and up to date…  So when I go down a list of treatments, he says medical tourism/ medical tourism ad nauseum.  Sadly.

However, we do know there are endocanabinoid receptors all over the body and particularly in the nervous system, and unlike  most (all?) supplements, it looks like cannabis may actually do something.

https://parkinsonsnewstoday.com/2019/10/25/therapeutic-potential-of-cannabinoid-compounds-in-parkinsons-and-lid-analyzed-in-review-study/?utm_source=PAR+E-mail+List&utm_campaign=1913ab1c24-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-1913ab1c24-73265445

Is it a cure? Highly doubtful.  Is it protective? Who knows, probably won’t find out for years. Perhaps in conjunction with other  meds? As per the article:

“Notably, preclinical studies suggest that a combination of CBD with compounds modulating specific non-cannabinoid receptors — associated with neuroprotective and anti-inflammatory effects and activated by endocannabinoids — may be an effective therapeutic approach to ease Parkinson’s motor symptoms and LID”.

As noted, I find 10 mg sublinguinal indica dominant CBD tincture (that has a full range of terpines, as per dispensary ingredients) to be of some clinical use (for myself only, not a recommendation).  I uses it 1-3x per day, as needed.)

 

[Andrew L.]

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 is in the realm of “guesswork”. In states where cannabis is still illegal I think a presumption can be made that most docs either know NOTHING or are hesitant to say anything (as they should be) because they don’t want to put their licenses in jeopardy. I personally have consulted with 5 different docs in two states who “specialize” in this, 3 appeared to be quacks and 2 appeared to me to be the real deal. This is in addition to multiple neurologists. Have also visited multiple dispensaries and talked to a lot of people.  What I learned so far (all comments are my personal observations only, do not hold up to scientific rigor) :

1)this is NOT about getting high, which I think is a really bad idea for PD patients due to the cognitive impairment that can result.

2) Probably best to get products from dispensary (need a card for this), as there are beneficial effects utilizing all the compounds and terpenes in the plants, which I don’t think you can get when trying to buy elsewhere. Also think products bought at dispensary probably have a more accurate profile in what you are actually ingesting.

3)Personally I think sublingual drops are the way to go; though vaping has a quicker onset, don’t think there is enough data about the safety of inhaling anything, and given that PD patients are at a higher risk for aspiration pneumonia, don’t like the concept of adding another irritant to the airway.

4) Cannabis products are sativa based, indica based or hybrids. Sativa is more for the head and has more psychoactive properties, indica more for the body.  There are certain terpenes in each that have different effects.  I think what we want is indica based compounds that relax the body.

5) CBD is not psychoactive (and the trace THC found it sold by dispensaries is likely meaningless), and is probably the safest product to use though like with the rest of cannabis more studies are needed. Most of the CBD sold does not tell you whether it is indica or sativa based. However some dispensaries do. If you can find one that sells indica based CBD, I think that is the way to go to help with anxiety, tremors and insomnia. It definitely relaxes the body (subtly). It generally comes in vials  with a dropper that tell you the mg and cc in each vial. You have to do the math to dose it. I find 5-10 mg sublingual to be helpful (in most concentrations this is about half a dropper, but again need to calculate). Probably best to start very low and titrate up. Best guess is 1-3x per day is probably ok, as needed.

6) THC products should be treated with extreme caution. I think most neuro docs would be against it because of the potential for cognitive impairment. I see no reason for a PD patient to mess with sativa based THC (really ever), which is what gets people the “highest”.  (Unless going to a Woodstock reunion ;weak attempt at humor).  However, indica based THC can be microdosed using a dropper that comes with the vial. 1-2 drops under the tongue at bedtime (dose is a tiny fraction of a mg) has been highly recommended  for insomnia (doesn’t get you high).   It’s all about risk: benefit imo. When weighing the potential for cognitive impairment from sleep deprivation versus the potential therapeutic effect form micro dosing indica based THC, I think the latter wins out. Personal opinion only, like the rest of what I am writing.

7) Myrcene (a cannabis based terpine ) can be found in certain teas’ and is probably helpful as well. High concentrations are found in indica based THC.

At any rate I will stop now. These are my personal observations and in no way am I recommending any of this for anyone.  Appreciate all feedback from anyone else pursuing this…and if anything I am saying is wrong (scientifically or otherwise) please correct me, am still learning.

[Andrew L.]

Hi Russ: Congrats on reversing your PD, there is very little about this in the literature. I have some questions for you:

1) Did you do this treatment on your own, or are you working in conjunction with a doc (if with a doc, is it a neurologist or internist?)
2) How did you decide on your butyric acid dose?
3) Which brand do you use?
4) Do you take dietary fiber and any other prebiotics or probiotics as well?

Many thanks and Happy turkey day, Andrew L.

[Andrew L.]

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, but rather a necessity. After a big day of exercise, I only feel slightly crippled versus completely crippled when I don’t do yoga. I do a half hour gentle routine for beginners that I learned at the “Y” years back. Many days after exercising I just want to lay on the couch, which is fine till I try to get up, haha. Hope we can continue to compare notes. Keep fighting!

[Andrew L.]

Agreed!

[Andrew L.]

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 keep the 2am does (if needed) at 1/2 tab. If that doesn’t work will contact doc about time release tabs, which would be the equivalent of 2 tabs at night. My big concern here is how much sinemet is too much, raising the risk of dyskinesia?  Taking the time released dose at night is essentially taking 2 tabs. How much do you take during the day? Has your doc given you a guideline about how much is too much?  Thanks, Andrew

[Andrew L.]

That is super helpful Mike, thanks

[Andrew L.]

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 🙂

[Andrew L.]

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 ask at next doc visit. Thanks.