Perhaps raising the head of our bed a few... - Cure Parkinson's

Cure Parkinson's

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Perhaps raising the head of our bed a few inches. From Ian Fritzell's (a PWP) vlog last week. Who knows?? A mixed bag.

MBAnderson
MBAnderson

I have not tried this myself, so I do not vouch for it, but I find Ian to be a reliable, objective source and a good guy, so I'll try it tonight.

Vlog #154 My Progress With Glycine, Thiamine, nocturia and Inclined Bed Therapy

4 min VLOG

youtube.com/watch?v=PJX318q...

5 min

youtube.com/watch?v=1rL154c...

"Phenomenal Health Benefits Of Inclined Bed Therapy One Radio Network interviewing Andrew K Fletcher"

50 min

youtube.com/watch?v=Z9zWUZB...

53 Replies

I think this is all part of the importance of draining your glymphatic system ie the waste from your brain. Chemicals may dissolve the proteins and toxins but if your glymphatic system isn’t carrying away the waste where does it go?

Combine this with myofascial release exercises to free up channels that have been blocked . Stretch your neck , your back, your chest. Have massage therapy.

rescuema
rescuema in reply to LAJ12345

"if your glymphatic system isn’t carrying away the waste where does it go?"

It gets stagnant, stinky, and malfunctions, just as in broken sewerage. I believe this is part of why moving around and exercising helps so much to fight the trend.

parkinsonsnewstoday.com/201...

sciencedaily.com/releases/2...

healthunlocked.com/parkinso...

LAJ12345
LAJ12345 in reply to rescuema

Yuk.

LAJ12345
LAJ12345 in reply to rescuema

And once your shoulders are nice a free try one of these. It’s cheap and I love it!healthunlocked.com/parkinso...

MBAnderson
MBAnderson in reply to LAJ12345

I got mine in the mail today. I'm looking forward to it. My rounded shoulders/posture really screwed up my shoulders.

LAJ12345
LAJ12345 in reply to MBAnderson

Have you done the myofascial release on your diaphragm? And got your shoulder able to move back and forth? I’m not sure if they are locked in place forward whether it can pull them back without doing the loosening up too.

MBAnderson
MBAnderson in reply to LAJ12345

No, I've never heard of it. I will look into it.

My shoulders are not locked in place. It's just painful if I move my elbows out from my waist up to shoulder height. They can't go any higher, so my wife has to help me put on my winter coat, which irritates me.

MBAnderson
MBAnderson in reply to rescuema

who knew? ugh.

LAJ12345
LAJ12345 in reply to MBAnderson

Here’s a previous post on it.healthunlocked.com/parkinso...

I did that for a wile (inclined bed), didn't notice a difference. That doesn't mean it isn't helpful, the arguments in favor are good ones.

I noticed I do sleep better with my head on a raised pillow (eventually two of them) bought from my "My Pillow" guy , Mike Lindel. Just kidding Marc! I hope you did not get upset on me for being on the neutral side. Still the first half of my first sentence is true.

MBAnderson
MBAnderson in reply to ion_ion

You got me there for a minute. Not at all. I liked your comment.

I raise my bed 6 inches at the head to reduce the effects of GERD (Gastroesophageal reflux disease which is a potentially serious condition that, untreated, can ultimately lead to cancer of the esophagus.). Gravity reduces acid getting into the esophagus from the stomach - which can cause indigestion and esophageal cancer in the long term - and the acid can also actually rot the enamel on your teeth.

I find Ian an honest broker too, and note his comments about B1 and disease progression. He clearly didn't feel he was experiencing any direct symptomatic relief either, but it is perhaps a pity that his expectations were that B1 halts disease progression

Richard, do you take B1?

Maybe. I have been experimenting with the sub-lingual, and have stopped 4 times previously. I'm wary of coincidence, but I currently sort of believe maybe, that too much worsens my tremor. But I am currently trying twice a week - maybe thinking about increasing that to alternate days.

I, too, used to be indecisive, but now I'm not so sure.

In my case a lot of the problem is I don't yet suffer the problems others benefit from. I don't have mood or energy issues. As for Roys pull test - mine is currently completely normal - so my prior dose of NIL B1 may have been the right dose (I take a B-complex supplement every day)

And my main symptom that bothers me is tremor - and B1 doesn't especially help with that

I have a lot of misgivings about glycine, especially for MSA and LBD. There's a lot written about its possible benefits, but potential problems are ignored - it lowers uric acid levels, it can be exitotoxic and may promote demyelination.

Glycine and tryptophan lower uric acid levels in patients with mild hyperuricemia:

pubmed.ncbi.nlm.nih.gov/308...

Glycine is inversely correlated with serum uric acid in healthy people and in lifestyle-related diseases:

nature.com/articles/s41598-...

more glycine related refs

1.Molina, J. A. et al. Neurotransmitter amino acid in cerebrospinal fluid of patients with dementia with Lewy bodies. J Neural Transm (Vienna) 112, 557–563 (2005).

2.Lane, R. J., Bandopadhyay, R. & de Belleroche, J. Abnormal glycine metabolism in motor neurone disease: studies on plasma and cerebrospinal fluid. J R Soc Med 86, 501–505 (1993).

*3.Raha, S., Dutta, D., Roy, A. & Pahan, K. Reduction of Lewy Body Pathology by Oral Cinnamon. J Neuroimmune Pharmacol (2020) doi:10.1007/s11481-020-09955-2.

4.Garcia-Santos, D., Schranzhofer, M., Bergeron, R., Sheftel, A. D. & Ponka, P. Extracellular glycine is necessary for optimal hemoglobinization of erythroid cells. Haematologica 102, 1314–1323 (2017).

5.Lane, R. J., Virgo, L., Lantos, P. L. & de Belleroche, J. A case of multiple system atrophy with hyperglycinaemia due to a selective deficiency of glycine transporter mRNA. Neuropathol. Appl. Neurobiol. 24, 353–358 (1998).

6.Carmans, S. et al. The inhibitory neurotransmitter glycine modulates macrophage activity by activation of neutral amino acid transporters. J. Neurosci. Res. 88, 2420–2430 (2010).

*benzoate reduces plasma and CSF glycine

Weird, simple health hack I've tried recently that works - breathing through the nose during cardio workout; it really reduces anxiety and improves mood, at least for most of the day that I do it. Unfortunately it increases my cold intolerance, just like Wim Hof breathing did. But I'm still doing it since it seems worth it.

I started just breathing in through my nose and out through my mouth every other minute. Now I'm up to doing most of the workout that way and am starting to try breathing out through my nose. For some reason breathing out through the nose causes me to become extremely congested. [ Edit - the congestion is due to the exhaled NO contact with nasal mucosa. However, when I breathe out through my mouth, I'm still getting the extra nasal NO absorbed into the bloodstream.]

youtu.be/0gtlAAQzENw

Much appreciated re Glycine.

park_bear
park_bear in reply to Rhyothemis

Lowering uric acid levels is a very good thing. Advice to the contrary is terribly wrong. I analyzed this in detail here:

Association ≠ Causation. Do Not Be Led Astray By This Popular Health Guru

tinyurl.com/ycsr4cfu

MBAnderson
MBAnderson in reply to park_bear

Once again you saved the day park_bear.

One more moral might've been added to your article, "caveat

emptor health gurus."

This, from Wikipedia, "A review of the book, published on Healthline, while praising some aspects of the book, also criticized "its repeated misrepresentation of research to fit the plant-based ideology."[29]

Retired physician Harriet A. Hall, who is known as a skeptic in the medical community,[30][31][32] has written that, while it is well-accepted that it is more healthy to eat a plant-based diet than a typical Western diet, Greger often overstates the known benefits of such a diet as well as the harm caused by eating animal products (for example, in a talk, he claimed that a single meal rich in animal products can "cripple" one's arteries), and he sometimes does not discuss evidence that contradicts his strong claims.[20]"

I've listened to a few of his podcasts and he has such a heavy affectation voice, I quit listening.

Rhyothemis
Rhyothemis in reply to park_bear

I will have to disagree with you on this one. Uric acid is the main peroxynitrite scavenger.

The SURE-PD trial of inosine to increase serum and CSF urate was halted due to lack of efficacy in the male participants, but inosine was found to be effective in both increasing urate and decreasing rate of progression in women: pubmed.ncbi.nlm.nih.gov/314...

I would rather not do anything that lower uric acid levels, but also raising it is not a very useful strategy since it can cause kidney stones (but perhaps close monitoring of urine pH and increasing fluid intake would avoid this).

Finding a good peroxynitrite scavenger should be a research priority, IMO. Another strategy may be to reduce peroxynitrite production (without interfering with NO signalling). Agmatine might do it (and I would know more about it except most of the articles on the topic are paywalled); Japanese sake apparently contains appreciable levels of agmatine and there's that interesting sex ratio flip in PD rates in Japan (but there's also soy or possibly seaweed consumption to consider).

I side with Dr Greger; his video on how humans lost the ability to detox uric acid is interesting:

nutritionfacts.org/video/mi...

Another interesting take on the issue of uric acid levels from Dr. Greger - Parkinson’s Disease & the Uric Acid Sweet Spot

nutritionfacts.org/video/pa...

Edit: Need to assimilate park_bear response to this video - which I find an interesting possibility🌺

park_bear
park_bear in reply to Rhyothemis

I am very glad you do agree that raising uric acid is not a solution. The urate levels in the study you cited which they characterized as: " mild (6.1-7.0 mg/dL) or moderate (7.1-8.0 mg/dL)" are not that all. These are extremely high levels associated with disastrous consequences. Raising uric acid is not only a cause of kidney stones, it is associated with dramatically increased risk of stroke and kidney disease. On the other hand lowering uric acid has been shown to significantly reduce risk of kidney disease. From the medical literature cited in my link above:

" Hyperuricemia is an independent risk factor for renal function decline. Patients treated with ULT [Urate-lowering Therapies] who achieved SUA < 6 mg/dl on ULT showed a 37% reduction in outcome events."

Risk of stroke increase 41%:

onlinelibrary.wiley.com/doi...

" hyperuricemia, but it is usually defined as a serum urate concentration >6.8 mg/dl, which is the limit of urate solubility in serum... Hyperuricemia was associated with a significantly higher risk of both stroke incidence ... RR 1.41 and mortality ... RR 1.36"

Stroke and kidney disease are a high price to pay for reduced rate of progression.

There are all kinds of good treatments currently under investigation. Albert Wright, user name wriga, is getting good results from sulfurophane. I am currently investigating Ceylon cinnamon. It would be premature for me to state conclusions but I am hopeful of being able to report good results.

Rhyothemis
Rhyothemis in reply to park_bear

Cinnamon will produce benzoate; benzoate lowers serum and CSF glycine levels.

~

The question remains as to whether glycine could be detrimental since it lowers urate (and perhaps has other effects). A blinded clinical trial would be a good idea (but I know that's probably not going to happen... )

park_bear
park_bear in reply to Rhyothemis

Here is a key study regarding cinnamon in Parkinson's:

Reduction of Lewy Body Pathology by Oral Cinnamon

link.springer.com/article/1...

Rhyothemis
Rhyothemis in reply to park_bear

yes, that's #3 on my list of references above

Rhyothemis
Rhyothemis in reply to park_bear

"Benzoic acid, widely used as a food preservative, is converted to

hippuric acid by activation and conjugation with glycine. This was one

of the first detoxification pathways discovered, and was formerly

exploited clinically as an alternative means of nitrogen excretion in

patients with urea cycle defects (Brusilow and Horwich 2001)."

reactome.org/PathwayBrowser...

park_bear
park_bear in reply to Rhyothemis

I took some time to review the recent investigation of uric acid sex differences you cited above. The underlying study was halted for failure to show improvement in the overall study population as well as the serious adverse effect of kidney stones. It is commonplace for the investigators promoting a failed study to do a post-hoc subgroup slice and dice in an attempt to demonstrate some sort of efficacy. It is usually possible find some subgroup that benefited. The remainder of the participants, not in the identified subgroup, do correspondingly worse. This sort of post hoc analysis is equivalent to shooting an arrow at the side of a barn and painting a bull's-eye around where it landed. It is not evidence. It can only be regarded as hypothesis generating.

In the matter at hand, the women in the highest uric acid subgroup enjoyed 7 point per year decrease in the rate of Parkinson's progression. However the men in the highest uric acid subgroup suffered a similar increase in the rate of Parkinson's progression, of 5 points per year. So does high uric acid actually aggravate progression in men and decrease progression in women? This could only be answered by another study, which should never be done due to the known adverse effects of high uric acid.

In my opinion, based on the evidence, the lower the uric acid the better.

Rhyothemis
Rhyothemis in reply to park_bear

Separating men from women in the SURE-PD study is appropriate given sex differences in UA metabolism.

The U-shape mortality curve has been found in a number of epidemiological studies & in at least two that accounted for kidney function.

ncbi.nlm.nih.gov/pmc/articl...

"In a general US population, it was reported that there was a U-shaped

association between SUA concentrations and cardiovascular mortality.

However, this relation was no longer statistically significant after

adjusting for eGFR and albumin–creatinine ratio (ACR) (6).

In our study, the association remained stable after adjusting for eGFR.

We were unable to examine the effect of ACR due to data unavailability.

In another study comprising Korean adults with normal kidney function,

Kang et al. found that the overall mortality rate had a U-shaped

association with SUA concentrations in males but not in females (7).

Furthermore, in a large cohort study of Korean general populations, the

authors demonstrated that low SUA concentrations were independently

associated with increased risk of all-cause mortality in both genders

and increased risk of cardiovascular disease in females only (9). There was no gender-specific relation in our study."

Very low UA levels can result from impaired renal UA resorption due to a mutation in UA transporter; people with this mutation have impaired vascular endothelial function:

jstage.jst.go.jp/article/ci...

park_bear
park_bear in reply to Rhyothemis

The 2nd article you cite does not show a U-shaped curve - as they state it is a J shaped curve, and only severe hypouricemia is associated with elevated cardiovascular events, as shown in figure 1. I have no problem with this result. It confirms the idea that low-normal uric acid levels are optimal for cardiovascular health. Genetic mutations aside, as I documented here, tinyurl.com/ycsr4cfu, severe hypouricemia is otherwise the result of serious illness and as such is merely associated with adverse survival outcomes.

If you want to avoid any treatment that might lower your uric acid that is your prerogative. Personally it is not an issue I deem worth worrying about.

In any case, as far as I am concerned the essential point here is that intentionally raising uric acid levels is not a good idea and you have stated your agreement.

Rhyothemis
Rhyothemis in reply to park_bear

The genetic mutation data indicate causation. Primates have evolved to have higher uric acid levels - that's why we don't have uricase and we also resorb uric acid from urine more efficiently than other mammals. There would not be positive selection pressure to increase levels of something that is entirely harmful. pubmed.ncbi.nlm.nih.gov/273...

park_bear
park_bear in reply to Rhyothemis

I agree that is evidence for usefulness of moderate uric acid levels, were moderate refers to < 6 mg/dL. The levels that the raising uric acid proponents call "mild", 6-7 mg/dL, are actually excessive, and levels they call "moderate" are extreme. Lowering uric acid below these levels has been shown to reduce kidney disease in an interventional study:

jrheum.org/content/jrheum/4...

" Conclusion. Hyperuricemia is an independent risk factor for renal function decline. Patients treated with ULT [Urate-lowering Therapies] who achieved SUA < 6 mg/dl on ULT showed a 37% reduction in outcome events."

Rhyothemis
Rhyothemis in reply to park_bear

Thanks for a good debate.

rescuema
rescuema in reply to Rhyothemis

You may be interested in the below article.

"Consistent with the role proposed for molybdenum deficiency in Parkinson’s disease is the observation that affected individuals have elevated sulfur amino acid levels, depressed sulfate levels, and depressed uric acid levels. "

nature.com/articles/s41531-...

The underlying issue may be suboptimal nutrition blocking purine/oxalate/sulfate metabolism in PWP.

If you haven't yet, visit the below post. I would try supplementing molybdenum (black-eyed peas) if missing in multivitamins/diet. Supplement less than 150mcg a day or it may cause copper dumping.

healthunlocked.com/parkinso...

MBAnderson
MBAnderson in reply to rescuema

Ms. rescue,

I read the article carefully and it gave me dementia.

rescuema
rescuema in reply to MBAnderson

huh?

MBAnderson
MBAnderson in reply to rescuema

over my head brain damage

rescuema
rescuema in reply to MBAnderson

😂 I seriously doubt that.

Anyhow, just be sure you're not deficient in Molybdenum so that you can detox properly (needed for sulfur metabolism, uric acid synthesis/purine metabolism, etc) - eat some black-eyed peas, but not too much since it can cause copper dumping/deficiency.

MBAnderson
MBAnderson in reply to rescuema

Pretty dramatic information for something seemingly so obscure. Black-eyed peas, here I come.

Rhyothemis
Rhyothemis in reply to rescuema

thanks, very interesting.

Good thing I love my peas! Lentils apparently also have molybdenum (if in soil).

rescuema
rescuema in reply to Rhyothemis

Be sure they're organic. Legumes are highly tainted with glyphosate and chelate Mo right out and block phase II detox.

Seems that the last word has not yet been written on uric acid and Parkinson’s . Here is a 2018 grant from the Michael Fox Foundation for ‘Uric Acid as an Antioxidant Treatment for LRRK2-associated Inherited Parkinson's Disease’.

“In this study, we aim to validate, for the first time, the ability of uric acid to protect nerve cells from damaging effects of LRRK2 mutations in iPSC-derived dopamine-producing nerve cells. Given the antioxidant property of uric acid and its involvement in the Nrf2 antioxidant pathway, it is likely to be therapeutic in LRRK2-associated inherited PD.”

michaeljfox.org/grant/uric-...

That grant was awarded prior to the recent futility halt of the human study, based on lack of overall efficacy and serious adverse effects. I doubt there will be any further funding, and approval from an ethics committee for a further human study is highly unlikely.

I did inclined bed therapy for a full year in order to give it a reasonable trial. Unfortunately I did not seem to get any benefit from it. I used a 6" lift at the head of my bed. It took sometime to get used to it, but the end result was no discernible change for the better. I started with a 3" lift followed by a 4 1/2" lift and then finally a 6" lift which made me feel like I was going to slide down toward the foot of the bed. Definitely no silk sheets if you are going to try it!

Art

MBAnderson
MBAnderson in reply to chartist

I'm going to give it a try, although I don't expect anything.

chartist
chartist in reply to MBAnderson

Good luck, and let us know how you do with IBT, Marc.

Art

rescuema
rescuema in reply to chartist

I've been sleeping on an elevated bed for the last several years and my experience mirrors exactly that of Art's. It took a while to get used to it and caused some back pain initially, but now I hardly notice any difference and have not noticed any particular health effects.

Did Ian try reducing thiamine before abandoning it? 4g a day, no wonder he felt worse.

it keeps my pd waterboarding down......suffocating from pd at night <48% lung left...........rigid chest muscles and rigid diaphragms...........cheers.

I slowly elevated the head of my bed from about 1 inch to 3 1/2 inches. I think it helps with breathing. But I'm not the one with PD. It's my husband. So, he did sleep on my bed one night, and said it felt good. I was at 3 1/2 inches elevation when he tried it.

I think it might help with his night-time drooling, but he says raising the head of his bed is more effort than it's worth benefit wise. So that was that.

He is still using thiamine btw.

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