Equivalent of a Cure?

[Alock2020]

Does anyone in this group believe that he or she has achieved the equivalent of a cure (either stopping progression of the disease or reversing it) , using any combination of supplements, devices, or exercise regimens?

Thanks- Alex

[Kwisatz]

How long does it take for the "fast walk" to appear? :-)))))))))))9

[AGH_1966 in reply to Kwisatz]

You are not going to heaven for that 😂

[pdpatient]

Yes, I know of one member : John Pepper. Fast walking does the trick and he turns 90 this year.

[Grumpy77 in reply to pdpatient]

... and he's had PD for... hmm.. ( my maths hat .... since 1963 to 2024) yeah ...for 60+ years Well done and kudos to John

[pdpatient in reply to Grumpy77]

I was born a year later after his diagnosis 😇

[Alock2020 in reply to Grumpy77]

Fast walking hasn't worked for me (yet).

[pdpatient in reply to Alock2020]

Try to start with a few minutes every other day. There's scientific proof that I have posted before

[Wildouiser10 in reply to pdpatient]

Mean

[1LittleWillow]

EDITING TO ADD: I just realized there is one more thing I've been taking faithfully since early 2020, and that's mannitol. It helps my mood and my energy levels a lot. Every time I try to discontinue it, I'm an emotional wreck within 5-6 days. When I take it, I'm my usual calm, pragmatic self. I do NOT understand it, but my brain/body apparently needs it.

****************************

According to my MDS, I have barely had any progression since I was diagnosed in August of 2018 and am, in some respects, better than I was at that time, based on UPDRS scores and his observations. He always says that he's shocked by my lack of progression. I am tremor dominant, and the only thing that has truly progressed is the tremor. I have also developed some dyskinesia in response to my mucuna fairly recently.

Mucuna works really well for me. My UPDRS score while "on" at my last appointment with my MDS was 4. I'm considering not taking mucuna for my next visit to see what my score is now without it compared to 2018.

I have had times when I thought my PD was getting significantly worse or progressing quickly, but each time I have figured out an underlying cause (diet, supplements, or stress). I still have days (just yesterday, for example) where I don't take any mucuna because my symptoms are mild. What I eat (not just protein) and when I eat dramatically impacts how the mucuna works, so I often skip doses or skip days so that I can eat whenever and whatever I want because I struggle to maintain my weight. I'm also dealing with dyskinesia now which, even when mild, isn't very pleasant, so sometimes skipping mucuna is preferable to that.

I attribute my apparently very slow progression to the fact that I started taking B1 less than three months after my diagnosis (12 months from onset of obvious symptoms). B1 has consistently been the only thing that keeps my symptoms at bay. I know everyone has a different response to B1, which I have always assumed is due to different genetics, diets, metabolisms, etiologies of PD, etc, but I am definitely a responder. The only thing I've been 100% consistent with since 2018 is B1 because my symptoms quickly get so much worse if I stop taking it. I have been about 90% consistent with magnesium supplementation because if I slack off on that I get RLS. All of my other supplements, diet, and exercise have been all over the map due to life being incredibly challenging and stressful.

The symptoms that I have that haven't really changed over time are significant bradykinesia in my left hand, mild-to-moderate dystonia in my left hand/arm, very slight left leg drag when I'm tired, occasional internal tremors (head, jaw, tongue), insomnia, very poor sense of smell and taste, and transient fatigue and lack of motivation.

The symptoms that B1 resolved are urinary urge incontinence, word-recall problems, lack of left arm swing, significant left leg drag, and extreme fatigue and apathy. There might be some others too, but I would have to look back at notes.

The last 10 months or so since I started an estrogen patch have been a terrible roller coaster because it took me a long time to figure out that it was affecting my need for B1, and then I had to figure out my new optimal dose/timing, which I have now (I think) achieved.

PD is still a struggle for me. I don't mean to make it sound like everything is fantastic because it isn't. I hate the fact that I can no longer play the piano or guitar, draw, paint, sew, crochet, cross-stitch, cook, etc. without a struggle--so many things that I used to find so much enjoyment in are now annoying or stressful because of the tremor and bradykinesia. Thinking about the future still scares me (my youngest is only 17, and I still homeschool her, and I have a 28 y.o. son who has high-functioning autism who is very dependent on me), but I believe attitude and outlook and having hope are so incredibly important, so I make a huge effort to stay positive, and I pray a lot. I definitely wouldn't be able to cope with PD without my Christian faith.

I really struggle with sharing things because I'm an introvert, and when I get a lot of responses, I get anxiety and have a hard time responding back. It feels very overwhelming, but I also feel that I owe much to this community because I've received so much helpful information and encouragement from others here on HU.

[Hope-full1970 in reply to 1LittleWillow]

Great post! I also get overwhelmed with all of the information. This is a great resource though and I'm thankful for it. I was wondering how much b-1 you take and in what form? Thanks!

[1LittleWillow in reply to Hope-full1970]

As soon as I can find time, I'm going to write a post about what's been happening with my B1. It's kind of a long story. For over 4 1/2 years I took 1 gram per day. I am currently taking 12.5 mg 3x/week. I only use oral thiamine Hcl.

[JayPwP in reply to 1LittleWillow]

Do you measure 12.5 mg from B1 HCL powder?

[1LittleWillow in reply to JayPwP]

No, it's 1/2 of a 25 mg tablet.

[JayPwP in reply to 1LittleWillow]

Which brand? I can't find any B1 HCL below 100mg.

[1LittleWillow in reply to JayPwP]

BariMelts Vitamin B1-3 Month Supply (90 Fast-Dissolving Tablets) - Post-Op Bariatric Vitamins​ a.co/d/4n7gIiB

[JayPwP in reply to 1LittleWillow]

Thank you 🙏

[1LittleWillow in reply to JayPwP]

You're welcome!

[Lookingforhealing in reply to 1LittleWillow]

Thank you for taking time to write a detailed report of what you're doing. Your post is inspiring. You don't need to reply since I'm not asking a question. Bless you.

[Rufous2 in reply to 1LittleWillow]

I'm intrigued by your mannitol story and wonder if it's an effect on the microbiome that's responsible. So many roads seem to lead to the gut.....

Looking forward to reading about your B1 experience.

[park_bear in reply to 1LittleWillow]

Thanks for composing this account of your experience.

[crewmanwhite]

I don't believe in "cure" but I have fully recovered from stage 4 Parkinson's.

Diagnosed in 1995 and ave been symptom-free since 1998.

It is all in my book "Rethinking Parkinson's Disease" or, if you want my life story, "Shaky Past".

[Dap1948]

I was diagnosed with PD 14 years ago and I haven’t really changed my levodopa dosage (250 mg/day) since I started B1 in 2017 and saw symptoms improve - bradykinesia reduced, rigidity disappeared, my gait improved, I could play piano once more. People tell me they can’t see that there’s anything wrong with me. I have walked regularly since diagnosis and believe exercise is important, but symptom improvements began with B1.

[keephope in reply to Dap1948]

dosage?

[Surfdoc1 in reply to Dap1948]

Are you on oral dose or IM injection?

[Dap1948 in reply to Surfdoc1]

Neither, I take a tablet sublingually.

[keephope in reply to Dap1948]

How much B1?

[Dap1948 in reply to keephope]

I’m afraid if I could answer that question in one sentence I wouldn’t have needed to write the book - ‘Parkinson’s and the B1 therapy’. (Profits go to fund future research). Dosage is very individual, but the book explains the protocol which will help you. find the perfect dose for you,

[Debgiffen]

I was diagnosed 9 years ago (confirmed by DAT scan) but had symptoms at least 5 years prior to diagnosis. The only medication I take is about 1 tab of 25/100 Sinemet per day. I mostly use 2 capsules of NOW brand of Mucuna Dopa along with 1/4 tab of Sinemet 2 or 3 times early in the day. I seldom take any meds after noon unless I need to go out socially.

I am physically active walking 4 miles several times a week, daily yoga and garden every day in the warmer weather. My PD symptoms are much less now than 5 years ago. My biggest PD complaint is occasional freezing, most likely brought on by the stress of being part-time caregiver for my 85 yr old mom who has dementia. And freezing only happens when I am medicated which I find odd. I also have stiffness and slow movements at times, usually triggered by stress.

I had severe tremors when I was diagnosed. Now I am completely free of tremors.

I give credit to my relatively mild symptoms to high dose B1, a whole food plant based diet(low protein) and daily exercise. And, yes, a bunch of ever-changing supplements but I can’t point to any in particular that have had such an impact as B1. See my profile for my story about B1.

Not cured yet but I’m working on it.

[Karmaone]

I was diagnosed about 2 years ago but symptoms started about 6 years before (DAT). I take a lot of meds according to my nurse... Senimet x3, Senimet CR x2, Rasagiline x1, and Trihexyphenidyl 2mg x3. It's important to me that I appear symptom free, and for the most part I do. I've only been outed by someone who specifically worked with PD.

I swim 20 length once a week, sauna, walk the dog most days, work a full time job, I'm studying a masters evenings and weekends, and have young children.

Although the meds did have a good effect, When I starting B1 it was the first time I felt like my brain was working again. Over the Christmas period my symptoms got really bad, tremor, bradykinesia, at times and dyskinesias, so I stopped all supplements (I have tried a LOT!) and halved my B1. I'm in the process of trying to add things gradually and see their effect.

1st, I re-added magnesium before bed, and I could not believe how much better my sleep was, or how bad my sleep had become. I'm currently trying high strength DHA, and I'm thinking my symptoms are improving but time will tell. I have mannitol I may try next.... and am deliberating if I will start barberin again.

Over Christmas, I ran out of berberine I had taken for 3 months, and I stared a low B1 b complex, ate too much, didn't exercise and didn't sleep well.

In contrast in the years leading up to my diagnosis, I would do 10 mile runs, go on bike rides, swim, eat a ketogenic diet, sleep well and regularly do 1-3 day fasts and my symptoms did not get any worse, and even seemed to disappear for a while. Then COVID hit, my diet went to poop and I pretty much stopped exercise.. this was when my symptoms seemed to spiral out of control, I also think I was also pretty depressed.

I feel fasting/keto and hard exercise are the main things that have helped me the most. B1 also has helped my mental energy, but not my tremor. When I was running hard, or biking up hills was the best I felt, even now if I push myself hard I can feel great for a while. I read the important thing for neurogenesis is the challenge, exercise is always good, but it has to be difficult, not just a routine. I also think berberine or any diabetes meds may mimic fasting.

Sorry for the long post 😂

[Hidden]

Hi, my wife's progression appears to be halted (I'm touching wood as I write this) and I put this down to a daily exercise routine at home and twice weekly at a local gym. A fellow sufferer at the same gym has visibly and significantly improved over the past 12 months apparently by undergoing an appropriate training regime conducted by the gym owner. The gym also includes a "reaction" machine (tapping 12 buttons on a large framework that light up randomly) that appears to be helping (her scores are improving by the day). The "Cup Song" routine that has been highlighted on this forum is another good one that appears to help.

[Hidden]

Thank you for the information. Your family has been through it. A quick google shows Immunocal to be very expensive and on the underlying component, Glutathione, I see this:

The human body produces glutathione, but there are also dietary sources. Spinach, avocados, asparagus and okra are some of the richest dietary sources ( 13 ). However, dietary glutathione is poorly absorbed by the human body.

So why would Immunocal overcome the poor absorption? We already have a healthy diet that includes the above.