Our Unknowable Quest To Slow Progress... - Parkinson's Movement

Parkinson's Movement

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Our Unknowable Quest To Slow Progression...

jimcaster
jimcaster

Coconut Oil. Mannitol. High Dose Thiamine. Vitamin B3. Vitamin B12. Vitamin D. Bio Kult. Fish Oil. Butyrate. Turmeric. TUDCA. Grape seed extract. Green Tea Extract. L-Tyrosine. NAC. Grapefruit Juice. Celery Seed Extract. Creatine. Astaxanthin. Glutathione. Red Light Therapy. High Intensity Exercise. Meditation. Intermittent Fasting.

I am not complaining and my list is not complete. I'm just thinking about how desperately most of us search for something, ANYTHING, to slow the progression of Parkinson's Disease and how fervently we swear by some or all of these supplements, vitamins, or therapies. Yet, it's completely unknowable. "Compared to what?" was one of MB Anderson's many insightful comments on one of my first posts in which I thought something might be slowing the progression of my disease.

There's no way to know how much worse we might be if we didn't try any of these things. So we soldier on. We don't give up. We can't give up. I swallowed 45 pills today, including 3 sinemets. I will swallow 45 more tomorrow. I will read every post which any of you may write tomorrow. I will remain grateful for the friendships and knowledge which I have gained from this site. I will remain cautiously optimistic that an irrefutable way to slow or stop progression is just around the corner.

87 Replies
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Yes, we are all on the “same Titanic”... let the band play on!

jimcaster
jimcaster in reply to AmyLindy

But we're not sunk yet. 😊

park_bear
park_bear in reply to AmyLindy

The Titanic went down to the hubris and stupidity. I do not think we are going down, but if we do, it will be more like USS Johnston, punching above our weight, and making inroads against the enemy for the benefit of those follow.

en.wikipedia.org/wiki/USS_J...)

scroll down to Engagement of Taffy 3

Always said if I can't be cured,hopefully I'll make it easier for the next person.

well said

Hi Jim, cautiously optimistic seems to me the healthiest way mentally and physically to proceed forward. I agree with the comment on swallowing a lot of pills,but tomorrow i will be up in the morning doing it again with the hope it will help in the long run.

jimcaster
jimcaster in reply to Drummer67

I completely agree, Mike. Maybe this will be like yesterday's Packers game. Much of it was frustrating and disappointing...but when it was all said and done, they emerged victorious. 🏈🏆🏈😊

You might wanna be careful with 45 pills or supplements. Years ago I tried many different supplements/vitamins and got complete brain fog from supplement overdose. Now I take less than 5 and not everyday.

The more I read, the more it seems most supplements are activity as a substitute for achievement. I have cut right back. Exercise, diet and maybe a gadget.

I am intrigued by the red light helmet and will probably indulge when SPARK finishes in March. Are you using one?

ChrisWF
ChrisWF in reply to WinnieThePoo

Supplements are easy. Exercising for at least 90min a week at 80% HRM? Fn difficult.

Consequently, everyone wants to talk about supplements. Few want to discuss high intensity exercise.

alexask
alexask in reply to ChrisWF

HIT is hard and may not be possible for those with heart conditions or other medical issues. Also this doesn't preclude doing both.

ChrisWF
ChrisWF in reply to alexask

I addressed that. But yea, not feasible for all.

The key delta is that, unlike supplements,HI exercise is somewhat credibly documented as being effective.

park_bear
park_bear in reply to ChrisWF

Re supplements. I read medical journals, analyze and report. With journal references.

When Good Doctors Prescribe Bad Medicine: tinyurl.com/zvgcu79

Bisphosphonates (Fosamax, etc.) increase fracture risk and should not be on the market. Statins are effective but dangerous. Vitamins D and K and a couple of minerals improve bone strength, reduce fracture risk and prevent hardening of the arteries. In so doing they result in better outcomes than both bisphosphonates and statins. Other hazardous meds and how you can protect yourself.

Vitamins and Minerals for Bone Health and Reduced Risk of Cancer tinyurl.com/hya5dwd

Vitamin K: Unsung and Essential tinyurl.com/yd9l4j3q Details of the vitamins and minerals that improve bone strength, reduce fracture risk, prevent hardening of the arteries, improve cardiovascular outcomes, and reduce cancer risk.

What You Need to Know to Reduce Risk of Hip Fracture and Cardiovascular Disease tinyurl.com/y8o9jy8u A review of the foregoing + calcium deposits on teeth as a sign of trouble.

NAC May Reduce the Severity of Coronavirus Respiratory Illness tinyurl.com/y2yl65sh

Big Pharma Spends $20B Annually to Influence MDs tinyurl.com/y3b5awdv

Junk Science, Bad Reporting Propagate Unhealthy Misinformation Regarding Supplements tinyurl.com/yay9yza2 A recent survey of the literature entitled Supplemental Vitamins And Minerals For CVD Prevention And Treatment alleged supplements were not useful for the prevention of cardiovascular disease. What they did was to find one weak study that failed to find a significant relationship between vitamin D and improvement in cardiovascular disease. This occurred because they only gave the patients a big dose of vitamin D once every four months. This dominated the survey results and they falsely concluded vitamin D was worthless. They also ignored vitamin K, which is one of the most important supplements for the prevention of cardiovascular disease.

How To Create An Invalid Review Of Studies tinyurl.com/yd7yuu9p One way to create an invalid review of studies is to mischaracterize what a key study says. What follows is the detail of how that was done

Alternative Medicine - Relief from Severe Asthma tinyurl.com/y8so37j8 Important information for asthma sufferers. A combination of Chinese herbs that is effective for asthma relief.

Schneiderman Denounces Supplements Then Quietly Withdraws Accusations tinyurl.com/y8m6moaj How the disgraced former NY State Attorney General employed a lizard expert to defame supplements.

ChrisWF
ChrisWF in reply to park_bear

The thread is about slowing PD progression. I'm sure you know this.

park_bear
park_bear in reply to ChrisWF

The proponents of high-dose thiamine have been begging for funding for a proper randomized controlled trial. Funding has not happened, presumably because there is no money in it.

Meanwhile, in an informal survey here,

healthunlocked.com/parkinso....

" After just one day and over a hundred responses, I counted 49 Yes (helps) and just 9 No’s (hoax)."

healthunlocked.com/parkinso...

ChrisWF
ChrisWF in reply to park_bear

Which is why i said "somewhat credibly documented". A survey on a forum where thiamine is in fashion is not credible documentation.

"Funding has not happened, presumably because there is no money in it."

Is there money in exercise? Was there money in coq10? Becuase those things have received clinical trials.

I suggest to you that what is really stopping a randomised trial is that a trial would effectively be impossible to design. Some people need 4grams, whilst others feel terrible on that dose. Some people only 100mg. Some people need to take for 4 months, others feel a difference in mere days. Sometimes you need to stop for a couple days because symptoms have returned. How do you design a placebo controlled randomised trial around all of this?

The other issue (in my mind) is that the the doctor had very grand claims (stops progression, no more dyskinesia) which makes it a bit harder to take him seriously.

gwendolinej
gwendolinej in reply to ChrisWF

Chris, I'm inclined to agree with you re B1 Thiamine. Where would you start with a trial. We did try Thiamine, with the blessing of our neurologist. He agreed that there's no research into many supplements, as there's "no money in it".

Mannitol is another story though. Here is a substance that's been used in hospitals since at least the 1960s for brain surgery and brain operations and to prevent or treat kidney failure, as well as during some urology procedures. It's never been researched further because no one would fund the research, ( certainly not a pharmaceutical company).....until now, and that's quite a story.

Gwendoline

park_bear
park_bear in reply to ChrisWF

All sorts of supplement and diet ideas for Parkinson's have been promoted in popular books and videos, by MDs and others, and they have not escaped notice here. Yet, high dose thiamine continues to get more attention than the others. In my opinion it is reversing the order of cause-and-effect to label it a "fad". I maintain high-dose thiamine gets more attention because it actually works. If it were merely a case of placebo effect, one popularized supplement would be as good as another, yet this is not the case.

The high-dose thiamine dose adjustment and holiday procedure is a written protocol that can be applied just as well to placebo as the active substance. If placebo arm subjects were to suspect they were taking placebo because they never needed a dose adjustment, this would hardly be the first study in which placebo subjects suspected as much. Perhaps the dose adjustment is the reason why a controlled study has not been funded, but such a study can be done and needs to be done.

I would also point out that levodopa is a naturally occurring substance that serves to supplement the missing dopamine in Parkinson's.

ChrisWF
ChrisWF in reply to park_bear

I dispute that dose adjustment (both to find the effective dose and when symptoms return) can reasonably be inserted into a clinical trial. I have never read one where they go close to what is what is frequently described as being necessary for HDT on this site. Have you? You would so many variables that the study would need an absurd number of people involved before you could reasonably infer actual patterns.

As for thiamine standing up above up above the rest of the supplements, im not so sure that this hasnt been pushed along by the fantastic claims associated with it. It isnt just the doctor*. You've also got Roy continuing to say his PD progression has stopped, whilst also effectively reporting that his PD has progressed. The hype was massive 2 years ago. Seems to have dropped off considerably so far as i can see, but of course when a new user joins and they read about how it stops progression, they are going to bring it up.

Yes, levodopa occurs naturally. I doubt most PWP consider it a "supplement", and i think when most PWP refer to supplements, they dont mean levodopa. The overwhelmimg majority of PWP are taking prescription levodopa and i dare say are not "supplementing" with an additional "levodopa" supplement.

* ill ask you this directly. Do you think HDT stops progression and eliminates dyskinesia?

park_bear
park_bear in reply to ChrisWF

In my opinion a trial with dose adjustment would simply administer thiamine per protocol and test subjects either experience improvement or not. It would not be about separately testing different dosages - it would be about testing a single protocol.

Regarding dyskinesia I have no idea. I can only speak for myself in regard to progression. I started taking high-dose thiamine 2 1/2 years ago. My symptoms do fluctuate for a variety of reasons. On the one hand I have had aggravations from other supplement ideas that ended up being adverse. Those effects I can filter out. On the other hand I believe I receive continuing benefit from the practice of Qigong. I would say that all things considered, I have not had progression since starting high-dose thiamine, but I would also say I have not had progression since starting Qigong even a year before that. So in my case I cannot say as regards overall symptom progression and high-dose thiamine.

However, there is one specific area where I can say. About a week after starting high-dose thiamine it restored normal bowel peristalsis. Combined with moisturizing strategies my Parkinson's related constipation resolved and has stayed resolved. So in this area high-dose thiamine reversed impairment and has halted progression, so far.

GioCas
GioCas in reply to ChrisWF

And since you've become an expert on how to design a trial since you have proven in your numerous replies that you don't know the difference betweepn dystonia and dyskinesia, you don't even know the side effects of C / L and you don't know HDT which is NOT based on a variable dose of thiamine.

And on this basis do you criticize the "doctor" you don't dare to name?

You go much better though when you counterpoint JP which at your level helps you lturn any discussion here into a clickbait for your post.

Today I will to be good to you and I give you a little help where you can start studying thiamine, PD and research and how supplements help with Parkinson's.

From MJFF whose founder you cited for your purposes as "suffering from dementia" today.

michaeljfox.org/news/thiami...

Please study, you may need it if you have PD, but I see that you are not very worried. Are you a beginner?

ChrisWF
ChrisWF in reply to GioCas

Ah yes, like clockwork, Gio arrives, crying like a little girl because someone had the temerity to suggest B1 isnt a miracle cure.

I didnt even bring up B1. Though i dare say that if it was as effective for you as the doctor claimed it to be, you wouldnt be so incredibly precious about it.

GioCas
GioCas in reply to ChrisWF

🙏🤟🏻

WinnieThePoo
WinnieThePoo in reply to GioCas

Gio

The MJFF report you reference is not research. And it concludes

"Should people with Parkinson's take thiamine?

At this time, the scientific evidence is insufficient to recommend thiamine for Parkinson's. Thiamine appears generally safe and well tolerated."

GioCas
GioCas in reply to WinnieThePoo

Yes I know ty Winnie

As true men of science they do not completely close the door to B1, true science is doubt that leads to research and discovery that leads to research and new doubts and so on up to conquer the stars. Faith and total closures to defend partisan interests lead to slavery. Honor to MFFJ scientists and its founder. For this reason I mentioned them and out of respect for the various souls of this forum.

Gio

PDGal4
PDGal4 in reply to GioCas

I've read the discussions here in the past about B-1 and tried it. I even had some email correspondence with Dr. Constantini, who was still alive at the time. I wish it had worked for me. I hope it works for others. I believe there are multiple movement disorders all currently grouped under the header of PD with different causes and different treatment responses. This is my way of saying it might work for some. I do wish we were all more tolerant of differing opinions. One size does not fit all and we do share similar goals. We all wish to slow, halt, or reverse progression.

From your link: (nothing I read supported B1 as a proven benefit)

"Early work on thiamine, also known as vitamin B1, suggests a theoretical benefit in PD, but definitive evidence is lacking."

And: "A few studies have found an association between low thiamine levels and Parkinson's disease, though studies had limitations. One hypothesis is that thiamine deficiency could increase brain cell stress, damage and loss. Two small, open-label clinical trials of a high-dose injectable thiamine showed improvement on patients' movement and certain non-movement symptoms. But the trials did not include a placebo group so it is impossible to determine how much of the potential benefit may be from a placebo effect."

And lastly, "At this time, the scientific evidence is insufficient to recommend thiamine for Parkinson's. Thiamine appears generally safe and well tolerated."

GioCas
GioCas in reply to PDGal4

This is a well-balanced and non-biased article that's why I mentioned it. It does not close the door to supplements as you can read and as it should be IMO.

Rhyothemis
Rhyothemis in reply to ChrisWF

It is perplexing how trials for treatments that aren't profitable are funded / not funded. There were no trials for MCC950 since it is off-patent and therefore not profitable: thenewdaily.com.au/life/wel...

An MCC950 derivative, Inzomelid, did really well in early testing for cryopyrin associated periodic fevers and there is a trial pending for PD listed in clinicaltrials.gov. Roche recently purchased its maker, Inflazome. Hopefully that means that they intend to fund further testing of the drug and not that they intend to squash it.

Here's an example of a researcher expressing frustration at lack of funding for testing of off-patent drugs such as UDCA: youtu.be/aA28_5YoYY0?t=955

I would like to see if it would be possible to crowdsource funding of trials.

Another thing is that even when there are double blind RCT trials available, if a substance or intervention doesn't have a marketing team and sales reps promoting it to doctors, it may not get put into clinical practice. On a related note, a neurologist at the MSA video conference said that if there were any approved drug treatment specifically for MSA, then that would help with diagnosis since the drug reps would raise awareness of the disease.

GymBag
GymBag in reply to park_bear

Park Bear, I have noticed changes in how and what you write. We are time limited. Are you being driven or are you selecting how you spend your time ? May I suggest you turn of the computer, and go for a walk , look around , see the little things ,talk to a neighbour. PD is not why we live and it is not how we live.

It can not be allowed to take over and you seem to be fully submerged

Sed fugit interea, fugit inreparabile tempus,.

Parkie-
Parkie- in reply to park_bear

Hi Bear

I read thru your links but there is a whole lot of matérial...

Concerning :

"Vitamin D doesn't do anything for bone density,"

What exactly does it take to specifically increase bone density? (I need to increase skull density before fus).

park_bear
park_bear in reply to Parkie-

Raloxifene is one possibility. See here: medlineplus.gov/druginfo/me...

Strontium increases apparent bone density due to its being a larger atom than calcium – this may be suitable for FUS. Strontium ranelate increases cardiovascular risk and has been banned for this reason. This may not apply to other forms of strontium: atsdr.cdc.gov/toxprofiles/t... "However, the only statistically significant product-moment correlationship for strontium (in urine and in drinking water) was for a decreased community mortality rate (in people over 45 years old) for hypertension with heart disease."

I have recently purchased the infra red coronet after trying all kinds of supplements. I was diagnosed 5 years ago and had been relatively stable on Sinemet until recently when I have had to increase the dose and still only get 2-3 hours 'on time'. I am desperate to feel better and to enjoy my life with my hubby, kids and grandkids so I bit the bullet and bought a coronet. I have only had it a week but am noticing some improvement already. Happy to share my experience so far if anyone is interested.

gwendolinej
gwendolinej in reply to GillRob4

I'd love you to keep us informed on your progress with the coronet. Where did you buy it. It's been in the back of my mind as a possibility for my husband.

Gwendoline

Where did you get the infra red ?

GillRob4
GillRob4 in reply to janemadison

See reply above. I bought the coronet from wellred.com.au/the-coronet

GillRob4
GillRob4 in reply to gwendolinej

Hi, I bought the coronet from wellred.com.au/the-coronet There is a lovely lady called Catherine Hamilton who is a Dr and she and Ron Brown an engineer invented the device. You can find out all about them on the above link. Catherine has been really helpful and always answers my questions really quickly. I have no connection to them other than buying the device 2 weeks ago. It was expensive but when I weighed up the amount I spend a year on trying out all sorts of supplements to see if they improve my symptoms (and which I don't really know if they are doing me long term harm) I decided it was worth a try. I feel if it can halt progression and/or relieve some of my symptoms for a while it gives me more time for research to come up with a cure. Am happy to answer any questions if I can.

gwendolinej
gwendolinej in reply to GillRob4

Thank you. We have one being produced here in Tasmania (Australia), which I've considered.

The reported improvements listed on the well red site are the same improvements we have had with mannitol. My husband is so well and seems to be improving still after almost a year on it, particularly his short term memory.

I'm storing the coronet info away in case the mannitol stops working.

Thanks again and please keep us informed on your improvements. The information is useful to the members and we get so much joy from hearing of members successes.

Gwendoline

GillRob4
GillRob4 in reply to gwendolinej

That's where mine came from, Tasmania.

Astra7
Astra7 in reply to GillRob4

Pls keep us updated. It’s an interesting idea.

I don't use a red light helmet... But I do use an infrared Sauna. 25 minutes mist mornings. I sweat profusely, then shower away all the toxins I have flushed out thru my skin.

JMSL
JMSL in reply to blogger_7

How long have you been using the infrared sauna? Has it seemed to impact your Parkinson's symptoms?

blogger_7
blogger_7 in reply to JMSL

Yes, I feel like it is beneficial I will send you links to my blog, where I talk about infrared: silverliningsandparkinsons.... and check on my Transparency page, where I update my progress around every 1 or two months. silverliningsandparkinsons....

Most of us don’t want to sit around doing nothing, so taking supplements makes us feel involved in our own treatment and important psychologically we might be making a difference. The cocktail changes as time goes on and the cost for most is not prohibitive. If nothing else, new suggestions keeps this forum active!

pdpatient
pdpatient in reply to Buckholt

Buckholt, I have stayed away from supplements because they cause problems at the hospital if one ever gets admitted for either a routine or emergency procedure.

I remember the time I had Achilles heel surgery. The nurses and doctors got flummoxed when they heard about the Mucuna Pruriens that I was taking. This was a total mystery to them and because time was running out for the surgery, they opted to administer local anesthesia instead of the general anesthesia that had been planned. In addition, they opted light sedation instead of deep sedation because they wanted to periodically check on me and needed to get responses from me!

ChrisWF
ChrisWF in reply to pdpatient

Guess you should have had your surgery at the local Ayurvedic hospital 😊

pdpatient
pdpatient in reply to ChrisWF

LoL. I can imagine what would be the reaction to something like 45 tablets😅😅😅😅

pdpatient
pdpatient in reply to pdpatient

Sorry Jimcaster, didn't mean to have that many emojis. My fingers wouldn't stop.

ChrisWF
ChrisWF in reply to pdpatient

"Might be quicker to tell you what i am NOT taking"

jimcaster
jimcaster in reply to Buckholt

I think you nailed it, Buckholt. Despite my pledge to "soldier on", I do plan to reduce the number of pills I take. We so desperately want to actually DO something that many of us (like me) do almost anything which some PwP or study says MIGHT be helpful.

Parkinson's is likely to be several diseases under the one banner with various causes and cures. Just because one thing works for you person and not for the other, doesn't mean it doesn't work for that person. People become very passionate about what works for them, not because they are trying to shill a product but because they want everyone to experience the effects they have. We all end up trying everything, hoping one of them help's our individual version of parkinsons. As Chris said, exercise will probably work for all versions of it. In fact, it's probably beneficial to all illnesses :-)

Complete list for my mother : other than Levodopa

Current : Ginger, Ceylon Cinnamon, Zeolite, Vitamin B1 (Thiamine HCL), B5, B6 and B12, Vitamin C ( Emergen C - 1 packet), L-Carnosine, NAC, DMAE, Acetyl L Carnitine, Kefir (probiotic) Red Light Therapy,Omega 3, Amla (Indian Gooseberry),Broccoli Seed, Benefiber ;

Tried and Stopped: Kombucha, Bio-Kult, Symprove, CBD, CBD+THC, Bullet Proof Coffee;

Daily Physical exercise : 30 minutes for arms and legs; 20 minutes walking and 15 minutes of Vajraasana - for thighs and legs ( Yoga pose - you may want to google it). Sunday is off day for physical exercise.

Morning : only 1 cup coffee - made with almond milk with Xylitol instead of sugar

Evening : 1 cup of Protein Drink ( Banana/Vanilla Flavor, has 1 gm sugar, 30 gms protein - available at Sams Club) + 1 Brownie - from Fiber One also available at Sams Club/Online (Chocolate Fudge has 70 cals, 2 gm of sugar and 6 gms of fiber, net carb is 5 gms.)

During this period of almost 3 years now, her Levodopa intake has come down from 8 tablets per day to 4. Looking forward to making it to 3 per day going into next year. ( Not going to be easy, a 25% reduction).

Xenos
Xenos in reply to John_morris71

Thank you for sharing

Godiv
Godiv in reply to John_morris71

John, do you mind my asking if your mom is using a red light helmet? You mentioned red light therapy, and I’m trying to figure out the least expensive way to do that. Thanks!

I think the single most important thing is to keep moving or exercising as much as you are able to as well as good nutrition and simply finding what you think works for you with the minefield of supplements.

The problem with taking so many together is not knowing which might be beneficial in your case.

My husband is taking some supplements similar to the one above, but not quite so many. He says the amount of pill coatings he is consuming with both supplements and prescribed meds, is unbelievable, he hopes they aren’t doing him any harm!

Since U.K. lockdown he goes out walking daily as far as he is able and it seems any extra exercise is a bonus.

The Wii games such as table tennis, boxing, bowling etc my husband will spend over an hour on plus other exercises he enjoys.

It is really hard to know what really helps, recently red light therapy has been added to the regime and it is definitely helping.

This afternoon we were at the park with our grandchildren when my husband announced he d forgotten his 3 30pm C/L and it was 5pm! Recently cut down dosage of C/L to 2 and a half doses a day!

When it comes to capsules, I discard the outer shelling and give only the powdered contents .

I do that with NAC capsules, as they were sometimes getting stuck in my throat. I now mix the contents into my morning weet-bix (this greatly reduces the sour taste).

Godiv
Godiv in reply to Zella23

That’s awesome Zella that he’s been able to cut back. I was asking John above about his mom’s red light therapy. Would you mind me asking how you all are doing it? Thank you!

Zella23
Zella23 in reply to Godiv

It is definitely making a difference just generally feeling more positive no where near as sleepy during the day and quite a few improvements in symptoms. Doesn’t need as much C/L so I think that helps with lessening dyskinesia and dystonia.Since red lights he has taken up pen and ink drawing again and has now had some of them on display at a Parkinsons Art exhibition in London. His name is John Smith.

parkinsons.art

Godiv
Godiv in reply to Zella23

That’s wonderful news! Thank you so much. I look forward to looking at his beautiful drawings. Is he using the helmet?

Zella23
Zella23 in reply to Godiv

Yep for 40 minutes twice a day.

Godiv
Godiv in reply to Zella23

Zella, I apologize -- did you get the one from Australia? I can't find the original chats about it. Was that you?

Zella23
Zella23 in reply to Godiv

Hi yes I emailed Merv at mrc777@bigpond.com He sent me the details and the cost and we went from there. Took about 3 weeks altogether.

Swallow on Jim. For me swallowing is getting problematic. For some reason spaghetti is the #1 culprit. I take my time, smaller bites, plentiful hydration etc. The nature of the Parkinson's beast. In my 11th year. Most Drs agree the best medicine is exercise. I agree.

My supplements are very similar to yours JimCaster, almost identical. May consider Restore Gold that has lots of those supplements in one pill. I am on no meds and have way less symptoms than when DX. I’ve noticed my b1 dosage keep dropping. Started at 3 grams, now 500mg is too much.

I exercise 45-60 min with my heart rate for at least 30 min at 90% of my max heart rate. 7 days a week.

I have also been using the red light therapy with great success. I sleep almost normal. I am doing well enough that I sometimes question my DX. (Had Datscan but on meds that cause (can) false positive)

My symptoms started after a blow to the head that injured my neck. I’ve have been seeing a nucca chiropractor that adjusted my neck. When aligned, I feel great. Almost like I don’t have Pd. My thoughts is that my CSP fluid/blood flow was partially blocked causing the PD. When aligned the Bloodflow and CSP fluid can get to my brain. I think that is also why partially why exercise works, esp at high intensity. More blood to the brain?

LAJ12345
LAJ12345 in reply to 38yroldmale

I am pretty sure you are right . I often wonder how much of the symptoms are due to a physical problem and the rest from the medication taken to ease the original problem! That’s why I think myofascial release is very important. Probably why yoga and qigong are good too, and even exercise helps the the lymph flow. Washes away the wastes from your cells I reckon.

Godiv
Godiv in reply to 38yroldmale

Hi 38, I keep asking people about red light therapy I’m sorry. How are you doing it, if you don’t mind my asking? I’m trying to do some thing with red light but maybe not pay almost $1000 for a helmet. Yikes. Thank you! I’m also curious what a nucca chiropractor is. I have to look that one up.

38yroldmale
38yroldmale in reply to Godiv

The Red Light helmet has been working good. My biggest improvement so far is in my sleep. I slept like crap before and now it is basically the same as before DX. I find mood for the most part is better. My good day/bad day have improved a ton.

A NUCCA chiropractor uses very gentle adjustments that aligned your atlas. I believe it’s very important To be aligned. To me, anxiety is a symptom Of misaligned. As I’m typing, I am quite anxious. I lifted something I shouldn’t have. I have an appointment on Monday to get readjusted. I immediately feel better. Maybe I’m oversimplifying, but maybe neck structure is susceptible to pinch my CSF fluid or blood flow. Anxiety is my brain‘s way of saying it’s pissed off at me, I’m lacking some blood or CSF? The MRI I had while being diagnosed stated there was something funny with my neck. Of course the neurologist ignored it, loaded me up with some drugs for anxiety.

Godiv
Godiv in reply to 38yroldmale

Oh, good, thank you. Which one did you get (helmet)? Or maybe there aren't that many choices. I'm really leaning toward getting one, but they are pricey. That's a good point about chiropractic adjustments -- it makes sense anxiety could be caused by blood flow issues. Interesting! Thanks -- and pls let me know about the helmet.

38yroldmale
38yroldmale in reply to Godiv

I got the cornet model from wellred. They have 2 models, get the one with red light and infrared light. That one is better for Parkinsons. It’s well built.

Godiv
Godiv in reply to 38yroldmale

OK, thank you so much. I’ll let you know how it goes.

You forgot Ceylon Cinnamon

Yes, it seems pretty daunting at times...

My husband was diagnosed in March 2017. If we learned nothing else, we’ve discovered that we had to be our own advocate and we’ve been grateful to have learned much from those who have already walked this path. My husband is on C/L, HDT, apple cider vinegar for gut health, vitamins for general health, and most recently added Xadago to bridge off times. We switched our diet to one that reduces inflammation in the body (think Mediterranean diet), greatly reducing or eliminating red meat, pork and sugary, processed foods. Every morning, we drink bulletproof coffee. In addition, we exercise together and he does voice therapy several times a week. It’s a pain at times, but he’s still extremely functional. I shudder to think if we had listened to our first inexperienced neurologist, who just diagnosed him, gave him Sinemet, and sent us home with no roadmap to figure out where we go from there. Initially, my husband felt depressed, and we literally did nothing for a year, except his medication. However, about a year later, he was ready to fight for his life, so we kept trying new things and remained hopeful. Today, we continue to research, looking for other therapies that may be beneficial. For us, there is no other alternative but to keep fighting. In many ways, PD has been a blessing because we are in this together, and it sure made us hone in on what’s important in life.

Zella23
Zella23 in reply to 1rocketman

Our experience was similar to yours in 2015 with the Neuro, told us it was progressive gave us the pills sent us away to figure out what else to do. We asked him about exercise and he just said ‘mild exercise.’

5 years on we ve learnt a lot, been helped immensely by this forum and all their valuable information. Researched continually, changed our Neurologist and as my post above managed diet, supplements and exercise that helps him.

Your list of supplements also include "Celery Seed Extract" which several forum members have reported to exacerbate their dystonia. Have you notices any such thing?

jimcaster
jimcaster in reply to iqbaliqbal

I included some supplements and therapies which I don't use. I do not (and never have) taken celery seed extract.

Decision making would be much easier if there were some way for people to monitor their own progression objectively over relatively short periods of time. Perhaps neurofilament light chain would be useful as a biomarker, depending on how fast it changes in response to interventions. Maybe software using fitness tracker data, or some specialized monitoring device to track movement. There's an early detection method [FacePrint] based on facial expression changes and micromovements under development that could perhaps be adapted to monitoring progression (if it works, it seems to have gone nowhere).

Thanks I am trying the supplements route. How much glutathione are you taking?

I didn't see this question. I was taking a glutathione product, but stopped a few weeks ago. It was called NanoGlutathione. One dropper full had 200 mg.

laglag
laglag in reply to jimcaster

Why did you quit taking the Glutathione?

Haven't seen all comments but seems Melatonin is missing

Godiv
Godiv in reply to JayPwP

You’re right! I just had a doctor told me to start taking that. Just 3 mg; I guess it’s not working at the moment since I’m not sleeping and it’s almost 1 AM but I’m hoping it’ll have some anti-oxidant abilities or something.

JayPwP
JayPwP in reply to Godiv

Try to count sheep, it may help

Godiv
Godiv in reply to JayPwP

Sometimes counting backwards by three from 100 helps. I’ll try sheep again thank you!

alexask
alexask in reply to Godiv

If you get the insight timer phone app and search yoga nidra for sleep, I find these are helpful. Jennifer Percy and the Stillpoint are my favourites.

Godiv
Godiv in reply to alexask

OK thank you so much! I’ll look into those. I appreciate it.

alexask
alexask in reply to Godiv

I am taking 10 mg, and am sleeping better. Still early days for me.

Godiv
Godiv in reply to alexask

Good. I think it’s age too. As you get older you just don’t seem to need the sleep tho you feel like it LOL. Glad the 10 mg is working for you. I mean it’s not perfect but it definitely does help, just not always.😱

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