Chronic Lack Of Energy W/Parkinson's

[brocktoon]

Hello all. My question today relates to my partner's long running problems w/regard to Parkinson's disease, which she has been suffering with for several years now. Her problems are myriad but perhaps her biggest issue is an extreme lack of energy and stamina. Those w/PD often have significant sleep disturbances and while I'm sure that is a big contributor to the ongoing energy deficit, I'm curious if you all may have ideas as to any diet changes or supplements that might help her in generating energy, and some reserve in terms of stamina. She's 60 and has probably entered the mid stages of the disease. It's going to continue to be a struggle for her, but if she continues to rely solely on sinimet/L-dopa, she will be at a loss.

 

[Zpol]

I'm very sorry to hear about your partner. The key will be finding out the cause of the fatigue; is it the meds, the unbalanced amount of serotonin , an underlying nutritional deficiency,possibly another illness like Hypothyroid for example, maybe a digestive issue or bacterial overgrowth, probably something with endotoxin. If she simply needs more sleep then relaxation methods may help.

I have a family friend with PD so I've done some research. So far what I've come up with is that dance therapy is extremely useful; a moderate exercise program can be beneficial for fatigue. Also, Cannabis is extremely helpful, with tremors especially, so if it's the tremors preventing restful sleep this may be an avenue to look into. I don't know about the legality in your region, but Micheal J Fox and his team of doctors, scientists and researchers are working to make if federally legal in the US.

On a side note, I have friend who was well into the progression of PD (had the tremors severely and the PD gate) and was literally able to "reverse" her diagnosis of the disease by doing self-hypnosis everyday. There is no cure per conventional doctors so they said "reversed the diagnosis" instead of cured. This is purely an anecdotal story, there simply is no research to refer you to on this but it could be very helpful to find a certified hypnosis practitioner to help. However, there is tonnes of info on how hypnotherapy can be beneficial for relaxation, this alone could help your partner get some restful sleep.

(Don't know how much you've researched any of this, I don't mean to sound condescending if this is all old news to you!)

 

[charlie]

This thread might have some insight:

Parkinson's Disease

 

[Rafe]

Hi, @brocktoon:
I am about the same age as your partner and I have a head tremor that got much worse on keto dieting about 4 yrs ago. Since experimenting with RP's freely available suggestions have helped a lot with general health. Everything improved consistently but sleep & tremor. I had terrible, anxious, fitful, even angry, agitated nights. On RP I had a few blissful, childlike nights, but few.

I recently discovered something new that does help me sleep. I had tried acetazolamide in a 250 mg capsule for a few days a year ago, but it made me feel bad (out of breath like exercising too hard). I left it alone for a year.

I ran into some medical posts on tremors that said acetazolamide is sometimes successful for head tremors. (Other posts say no evidence for that.)

I tried acetazolamide again a couple of weeks ago & found that a super-tiny dose (10 - 30 beads twice a day out of a 250 mg separated capsule) didn't do away with my tremor completely, but does help me recover from talking to groups for long periods (hyperventilation) and gives me restful, deep sleep, which compensates stress & makes the tremor less upsetting. It can't be more than about 25 mg at a time but it works well for me.

Bag breathing would probably work well, too. There are good threads on co2 here.

As I understand it, acetazolamide can't raise co2 but it forces excretion of bicarbonates (so it is marketed as a diuretic), which acidifies the blood, which signals need for deeper breathing, greater oxygenation. So making sure your partner gets enough fluids with alkaline minerals is important in any case. So milk & oj. Don't take aspirin while taking acetazolamide btw.

 

[brocktoon]

Hi, @brocktoon:
I am about the same age as your partner and I have a head tremor that got much worse on keto dieting about 4 yrs ago. Since experimenting with RP's freely available suggestions have helped a lot with general health. Everything improved consistently but sleep & tremor. I had terrible, anxious, fitful, even angry, agitated nights. On RP I had a few blissful, childlike nights, but few.

I recently discovered something new that does help me sleep. I had tried acetazolamide in a 250 mg capsule for a few days a year ago, but it made me feel bad (out of breath like exercising too hard). I left it alone for a year.

I ran into some medical posts on tremors that said acetazolamide is sometimes successful for head tremors. (Other posts say no evidence for that.)

I tried acetazolamide again a couple of weeks ago & found that a super-tiny dose (10 - 30 beads twice a day out of a 250 mg separated capsule) didn't do away with my tremor completely, but does help me recover from talking to groups for long periods (hyperventilation) and gives me restful, deep sleep, which compensates stress & makes the tremor less upsetting. It can't be more than about 25 mg at a time but it works well for me.

Bag breathing would probably work well, too. There are good threads on co2 here.

As I understand it, acetazolamide can't raise co2 but it forces excretion of bicarbonates (so it is marketed as a diuretic), which acidifies the blood, which signals need for deeper breathing, greater oxygenation. So making sure your partner gets enough fluids with alkaline minerals is important in any case. So milk & oj. Don't take aspirin while taking acetazolamide btw.

Thanks, Rafe. That's interesting about aacetazolamide's effects.

 

[brocktoon]

I'm very sorry to hear about your partner. The key will be finding out the cause of the fatigue; is it the meds, the unbalanced amount of serotonin , an underlying nutritional deficiency,possibly another illness like Hypothyroid for example, maybe a digestive issue or bacterial overgrowth, probably something with endotoxin. If she simply needs more sleep then relaxation methods may help.

I have a family friend with PD so I've done some research. So far what I've come up with is that dance therapy is extremely useful; a moderate exercise program can be beneficial for fatigue. Also, Cannabis is extremely helpful, with tremors especially, so if it's the tremors preventing restful sleep this may be an avenue to look into. I don't know about the legality in your region, but Micheal J Fox and his team of doctors, scientists and researchers are working to make if federally legal in the US.

On a side note, I have friend who was well into the progression of PD (had the tremors severely and the PD gate) and was literally able to "reverse" her diagnosis of the disease by doing self-hypnosis everyday. There is no cure per conventional doctors so they said "reversed the diagnosis" instead of cured. This is purely an anecdotal story, there simply is no research to refer you to on this but it could be very helpful to find a certified hypnosis practitioner to help. However, there is tonnes of info on how hypnotherapy can be beneficial for relaxation, this alone could help your partner get some restful sleep.

Thanks. I think PD is, in large part, associated with (or causes) mitochondrial dysfunction, which is at the root of her chronic energy deficit. Her lack of regular, sound sleep doesn't help of course. But metabolically speaking, her system is so compromised, I realize there's no easy way to help her. I have no idea as to how self-hypnosis could help improve such a multi-factorial disease, at least at its roots, but the mind can be quite powerful, so...

 

[theresa]

Hello, I am borderline hypothyroid, and have PD, which left me with horrible fatigue. I learned a lot about mucuna purines, and the vitamin b 1 protocol by Italian Dr Constantini on a forum called health unlocked. I also take a thyroid supplement called t-balance, b complex, mineral supplement, curcumin, coq 10, do dance therapy at home, treadmill 30min daily. Sleep really makes, or breaks me, so I will resort to valerian, sleepy time tea, or meletonin..I'm much more energetic than previously.

 

[YourUniverse]

My father has a movement disorder related to Parkinsons. It is called spinocerebellar ataxia (Spinocerebellar ataxia - Wikipedia). His symptoms are in line with those briefly described therein: speech and balance deterioration, which cripples his life much more than physically.

I have done some research, but the degenerative disease is fairly rare and medically not well understood. My thoughts are to address the disease like one would address parkinson's, the disorders being of the same class.

I have directed him towards lowering serotonin and maximizing dopamine through diet, with a few targeted chemicals and supplements. His base diet has been made more Peaty, avoiding PUFA fairly well, with more fruit, eggs, meats, cheeses and carrots. For the dopamine portion, he drinks coffee and has done so for virtually his entire adult life. On top of that, I have him take 1/2 tsp of mucuna pruriens in the mornings. For serotonin, he takes 1/2mg cyproheptadine in the afternoons, although he HATES the dry mouth associated with it to the point that he neglects it even though he enjoys the calm it gives him - this has me looking at other serotonin antagonists, maybe metergoline or something similar would do the job without the cotton mouth?

Am I missing anything rather important in his therapy? Maybe some small quality of life improvement I am overlooking for him?

 

[jandrade1997]

Try allithiamine:
Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study. - PubMed - NCBI

The study showed good results with 100 mg of thiamine injected twice a week, but allithiamine increases blood thiamine as well as injection of plain thiamine (and probably increases brain concentrations even more), so taking 100 mg at least twice a week should help. I'd imagine 50-100 mg daily would be even more effective, and certainly couldn't hurt.

 

[jandrade1997]

I would also recommend Haidut's energin product once or twice a day.

 

[lampofred]

I think high doses of coffee might be helpful in combating Parkinson's. Not only does it increase dopamine in the short-term, it protects and regenerates dopamine neurons in the long-term (which is where its real benefit lies). I had pretty strong Parkinsonian symptoms (maybe from drinking too much milk, consumption of milk has a strong association with Parkinson's) like tremors, muscle rigidity, excessive sleeping, anxiety, changing handwriting, slouched posture, etc. but a few months of 1200mg caffeine a day (like 12-15 cups a day) changed things for me over time.

Hope your wife gets better.

 

[brocktoon]

Try allithiamine:
Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study. - PubMed - NCBI

The study showed good results with 100 mg of thiamine injected twice a week, but allithiamine increases blood thiamine as well as injection of plain thiamine (and probably increases brain concentrations even more), so taking 100 mg at least twice a week should help. I'd imagine 50-100 mg daily would be even more effective, and certainly couldn't hurt.

Thanks. I've asked my fiance to try allithiamine in particular (from Ecological Formulas) at 50 to 100 mg daily. It's expensive. Some people recommend benfotiamine, another derivative of thiamine, which is more affordable. Now, if I can figure out how to administer it via "intra-muscular injections" like in the referenced study, I'll really be in business.

 

[brocktoon]

I would also recommend Haidut's energin product once or twice a day.

Thanks - yes, I was looking for ways to specifically address the chronic energy deficit that comes with Parkinson's Disease. I do know that pills and supplements alone aren't the answer though.

 

[theresa]

Didn't the coffee produce a lot of anxiousness ?

 

[jandrade1997]

Thanks - yes, I was looking for ways to specifically address the chronic energy deficit that comes with Parkinson's Disease. I do know that pills and supplements alone aren't the answer though.

The benfotiamine is better absorbed through the gut than regular thiamine, but after that it acts just like regular thiamine, meaning it is not absorbed well through the blood brain barrier into the brain. Allithiamine really is worth the extra cost in this situation I'd say (the product I've seen should last over four months on 100 mg a day, so it doesn't come out to more than 7 dollars a month or so).

With allithiamine, there is no need to worry about injection. It is completely absorbed, and reaches plasma levels equivalent to injection of plain thiamine, and has the additional benefits of being much better absorbed into the brain.

 

[TreasureVibe]

This PhD doctor (who wrote the popular book Men are from Mars, women are from Venus https://www.amazon.com/Men-Mars-Women-Venus-Understanding/dp/0060574216) says he cured his own Parkinson's disease with several supplements:



His blog post about Parkinson's: John Gray - How I Reversed My Parkinson's Disease

 

[YourUniverse]

This PhD doctor (who wrote the popular book Men are from Mars, women are from Venus https://www.amazon.com/Men-Mars-Women-Venus-Understanding/dp/0060574216) says he cured his own Parkinson's disease with several supplements:



His blog post about Parkinson's: John Gray - How I Reversed My Parkinson's Disease

Tyrosine instead of L-dopa so dopamine producing enzymes don't downregulate, and 5-HTP (serotonin inhibitor might be better instead) - interesting, thanks for the post. His book's pretty good too

 

[brocktoon]

Tyrosine instead of L-dopa so dopamine producing enzymes don't downregulate, and 5-HTP (serotonin inhibitor might be better instead) - interesting, thanks for the post. His book's pretty good too

His book might be entertaining, but he's a mega-wealthy self-promoter who hawks products in various media as well as high-priced fancy-looking supplements that I wouldn't trust. He claims he "had" (past tense) PD and cured it all by himself, but provides little or nothing in terms of documenting his condition in the past or at present.

 

[YourUniverse]

Yeah. Don't give in to the marketing . He recommended 5htp, when we know we should avoid serotonin producers. The book was good though.