If you could only continue with just one alternative PD therapy, what would it be? (My rather gauche attempt to pick your brains and not re-invent the wheel.) For me, it's MCT oil. What about you?
Your best adjunct therapy pick: If you... - Cure Parkinson's
Your best adjunct therapy pick
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Dabaa
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I have not been diagnosed with PD, I have RBD and had some PD symptoms (which are much better over the last 3 years).
I could not choose one thing. If I could only pick 2 things, they would be my gluten and lectin free diet and my daily broccoli sprouts.
But I would also really really want my 2 grams of nicotinic acid and my 1200 mg of berberine.
I'd hate to give up my 30 mg of Lithium Orotate and my 2 grams of Meriva Curcumin.
And I am not stopping my lactobacillus Casei Shirota (Yakult): Anti-bacterial, anti-fungus, anti-inflammatory, anti-viral, reduces cortisol levels.Two bottles a day.
And don't get between me and my 600 mg Palmitoylethanolamide with Luteolin and Magnolia Extract 400 mg (90% Honokiol and Magnolol) before bed.
Finally, I AM going to continue listening to my 250hz pulsed at 40hz Isochronic.mp3 drive.google.com/file/d/14X... every day.
So... this means I WOULD give up: L-Methylfolate , vitamin C, Vitamin D, Oxytocin Nasal Spray, NAC, and Taurine if I had to. But I don't have to, so I won't.
Thanks for the question. You got me to prioritize my protocols. I hope this was helpful.
It was! Best to ya.
What symptoms of PD did you have and for how long? Is your daily regimen for RBD only? I also have RBD but didnt know I could actually treat it myself until I read this thread. Ive had vivid dreams all my life! So no Melatonin?
So I was diagnosed with RBD 3 years ago on April 2nd. At that time my RBD was not as bad as some, but I was hitting walls and kicking and throwing pillows and falling out of bed. On the PD type of symptoms I had a sore stiff left shoulder, pain in the left side of my back, a sore stiff neck to where it hurt to hold up my head when I was cutting the grass, sore left leg, balance issues (I would lean over to do something and start to fall), orthostatic hypotension (I'd get light headed and have to hold onto something for about 10 seconds when I stood up from sitting), seborrheic dermatitis on my face and bad dandruff, just kind of slow, and of course I lost my sense of smell over 10 years ago.
So 3 years later:
My RBD is mild. About once a week I will reach a hand out or say something, but I don't have the wild violent dreams. I don't fall out of bed. I don't throw my pillow.
My left shoulder is so much better. It is still a little sore but about half the time I don't notice it. It is fully functional and I use it normally and don't baby it.
The left side of my back is fine now. It used to feel like there was a piece of duck tape stuck to my back.
My neck is still sore but much better. Much better.
Left leg (my thigh) is still somewhat sore but again, much better. It used to hurt whenever I climbed stairs but half the time I don't notice it anymore. That might not even be PD related as I have a weird way of sitting cross legged in office chairs that my be the cause.
No balance issues.
No orthostatic hypotension.
No seborrheic dermatitis on my face. This really bothered me as to me is seemed diagnostic and would not go away. My dandruff cleared up too.
A lot of the time I actually feel nimble when I am moving around the house. Quickly moving and changing directions with energy.
My sense of smell is still bad, but it is probably a little better. I have been doing olfactory training.
This is only my experience. It is probably relevant that I have Hashimoto's. I keep that in mind when I evaluated protocols.
Okay, I will shut up now.
Thank you for sharing
Collectively all the supplements and modalities I've used result in a UPDRS score of -200. Ha ha. Seriously though, my best go to remedy is broccoli seed tea. Consistently effective and safe to use. Exercise and a ketovore diet are next
Thanks. May I ask what the seed tea does for you specifically, please?
Hello PDKiwi ~ I was wondering if you would share information regarding your broccoli tea ~ what kind of broccoli seeds, source, or do you get the tea already to use, again source, amount, etc.
Thank you & have a fabulous day!!!
DBS!
Exercise (followed by MIND diet)
Bened Life PS128 probiotic (helped to reduce tremor & anxiety, took about 2 1/2 mos to see improvement!), TruNiagen (saw brain function improvements in about 3 weeks), Naltrexone (ordered by NP doc, improved sleep, tremor, anxiety, took 2-3 mod.), Comfort Linen sheets & pj’s, Vital Nutrients Betaine HCI Pepsin.
My HwP takes a lot more, but these are the things that I have seen amazing results from. I would add exercise but due to tremendous back pain he has been limited. The 2nd summer after dx he rode his e-bike over 2,000 miles (& we have short summers!). He just had cortisone injections in his back in the hope that he can get back to biking!! He goes faithfully to Rock Steady Boxing. I guess it helps. The biking did help!!!
And we just got him an inversion table. After using it he stands up straighter & he’s only up to 3 minutes on it!!! So I guess I’ll add that to the “can’t do without” list.
I hope this helps!!
Have a fabulous day!!
My number one pick would be inducing your body to get into a state of Autophagy. For all the details, see my post on this here
healthunlocked.com/cure-par...
There's all kinds of stuff that helps people, more in some cases and less in others. Everybody has to try everything and figure out what works best for their particular case. Another thing that helped me immensely, especially with debilitating brain fog, was supplementing with Lithium Orotate. All the details are in this post -
healthunlocked.com/cure-par...
High dose Thiamine HCl (Vitamin B1) can do wonders if you can figure out the right dose for yourself. It is well documented.
This one isnt for everyone, but I like to use Whey Protein Isolate on a daily basis. It contains every essential Amino Acid, especially Cysteine, which is the foundation for Glutathione, the master antioxidant.
Placebos (the placebo effect is especially strong in people with parkinsons. Anything you actually believe is working for you induces the placebo effect, which is proof that the cure is in you somewhere already!) More informatione here -
healthunlocked.com/cure-par...
A few more things I will list, and you'll notice that nothing I mentioned is a pharmaceutical prescription medication.
Organic Nutrition
Ketogenic Diet
Carnivore Diet
Anti-inflammatory Diet
Regular exercise
Good quality sleep
Prayer (works miracles for some people, and its free, so you have nothing to lose with this whether you believe or not)
Try one, try them all! You are unique in what will help you the most! Remember, Parkinsons is not for the weak. We are fighting an undefeated opponent, so you have to give it everything you've got!
A well-balanced bioactive B-complex is crucial for me. It has primarily contributed, supported by the usual lifestyle improvements, to keeping my PD and Perifere Neuropathy symptoms more or less under control, and not requiring C/L medication in a stress-free environment. According to my neurologist, this situation will likely last for a half a year, perhaps at most 2 years. He doesn't suffer from a positive outlook on life 🙂, but maybe realistic. Hope and optimism, also very important!
Although I think that my PD symptoms are well addressed by C/L and vCR at the moment, the polyneuropathy has been progressing, despite exercise, physio, propionate, etc., so I think I need to make a fresh start with the approaches for dealing with the PNP. As B vitamins seem to be important in this context, which would you say is the best thread on HU getting started on this subject? (Asking the obvious expert 
many thanks!
I specifically mention B complex and not the individual B vitamins, although each of them is of great importance for the various PD symptoms and overall health. But certainly also in my case and probably for many of us, they are of great importance for PN. As you know, this insight started after the discovery of a severe B6 deficiency. The well-known post by park_bear put me on that track. Although we differ in opinion about the dosage of P5P, his post should be mandatory reading for PWP. I can only wholeheartedly endorse his addition about the possible B2 deficiency, although it is not easy to prove because it is tested even less than B6 in the diagnosis of PD. In addition to B6, B9 and B12 are essential for limiting homocysteine. Although I am not a fan of high doses, as is often the case with B1, I do see the importance of supplementation in reasonable amounts because there seems to be a symbiosis between all B vitamins, which eliminates the need for high doses. Finding the balance in this was perhaps the most difficult part in achieving the current result. Time plays a crucial role when it comes to the use of supplements in general, including B vitamins. Typically, they do not provide immediate action or tangible benefits in the short term. Similar to medications, consistent use over a long period of time is necessary to reap the benefits, especially in the treatment of slow-progressing diseases like PD and PN. There is simply hardly any scientific research available on this, but I am open to any information that I may have overlooked. I will try to write something about it soon with the limited information that is available, which aligns with my current findings.
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
Thank you very much for your detailed response and the pointers, all of which is very helpful. I had been taking a B complex supplement for some time (actually one on your list:), but then realized during a lab check-up that some B vitamins were already above the normal range, while others were ok or possibly still deficient. So that made me realize that I probably have to look at individual Bs and their interactions more closely. So I'll do some reading up, with an eye particularly on implications for PNP.
Thanks again!
As I mentioned, finding the right balance of B vitamins can be challenging.. It took me about 1 year and a half and many tests to figure out the right dosage for B6. I would appreciate it if you could let me know (via chat if you prefer) the abnormal values in your recent test, along with the duration and dosages of the supplements you have taken. However, this information alone doesn't provide a complete picture. The imbalance in your B vitamins could also be due to other factors such as diet, individual absorption issues, medications or supplements that interfere with absorption, or other underlying health conditions.
Definitely vCR glove stimulation. Although I am not sure if this classifies as adjunct therapy or proper therapy, for me it’s more the latter. So if I can pick one more remedy then, it would be ashwagandha for feeling less stressed.
May I ask: how did you come by those gloves - are they for sale somewhere?
There are several routes by which you can get gloves for trying out vCR at the moment: (1) join one of the clinical trials that Peter Tass, Synergic or other developers of vCR gloves are running -- although it's quite unlikely to get into one of the few available slots (but there are people on this forum who are or have been in one of the trials), (2) join the DIY vCR glove building community using instructions also found here on this site (e.g., the threads by WinnieThePooh are a great starting point: healthunlocked.com/cure-par... ), (3) use gloves that are not-quite like proper vCR gloves, but which may potentially still convey some benefits, such as the bHaptics TactGloves (bhaptics.com/shop/tactglove) -- there are also some user experiences for them on HU, e.g. here: healthunlocked.com/cure-par... , healthunlocked.com/cure-par....
Be aware that there are also caveats for following any of these routes -- no effects without side effects.
Thank you so much, Ethin. Which are you using?
I have been using both the bHaptics TactGloves and a set of DIY gloves, and have derived benefits from both: mostly reduced rigor, reduced dystonia, much increased energy and a reduction in medicine - I currently get by on half the amount of C/L that I took a year ago while feeling better.
My improvements may not have been as dramatic or fast as for some of the patients showcased in Peter Tass ' videos, but they have made a substantial change to my quality of life. Key to this, I think, is the regular application of the gloves. I am using them every day, for about 3.5 hrs on average. (So it's really more a therapy than an 'adjunct' :).
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