I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day. It doesn't seem to be working as well now but I don't want to increase it due to side effects.
What is the #1 thing you have done, taken that you feel has alleviated your symptoms? B1, Fish Oil, CDP Choline, Infrared, FUS, DBS etc.
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staceysack
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Hi Staceysack. For me, they are: 1) C/L meds, and, 2) daily exercise. The exercise has improved my symptoms so much that I have reduced my meds from 1/2 C/L 25/100 3X daily down to 1/8 C/L 25/100 3X daily over the course of two years. When I could not exercise when I was recovering from cataract surgery, my symptoms became worse. You may want to try cutting down your dosage since you exercise regularly.
Thank you for responding! Unfortunately, I start shaking so badly that I am unable to cut down. Maybe I need more exercise. I do HIIT 4 days a week and walk 1.5 miles almost daily with my dog. I also do Qigong 4 times a week. I was thinking of trying B1 or CDP Choline to try to cut down on the meds. I might try taking a 1/2 C/L at a time to see if I can cut back that way.
I only cut down C/L when a reduction of symptoms as a result of practicing Qigong allowed it. Perhaps my experience will be useful for your Qigong Practice: healthunlocked.com/cure-par...
Consider you might be taking too much. My hubby still is on 50/12.5 tablets. He found the best thing is taking smaller amounts, closer together except with a larger dose first thing in the morning . I think the shakiness is as much to do with the side effects of the dopamine breaking down as the running out of dopamine.
Thank you - I will try that this weekend when I am home & can "expirement" with doses. I will take 1/2 at a time to see if that helps. Thank you for the information.
I would reduce slowly. Maybe go to 3/4 first for a few days and see if you feel better or worse. You could try taking the other 1/4 at the halfway point in the schedule as another option if you feel you are petering out too soon. That puts a little mini peak in the middle of the dose cycle which stops the sudden drop off at the end of the dose period.
Here is a picture I made that explains how doses overlay.
Thank you! I actually tried 1/2 today and was shaking badly at the halfway point between the next dose so I took the other 1/2. Took a while to stop shaking. I will try 3/4 next.
I think the key is make changes slowly. Leave a few days to judge how it feels as it might take a wee while to settle in to a new pattern.
If you start any new meds and notice any rapid symptom worsening it is probably too strong or not the right med for you . It’s almost certainly a drug reaction. Dr will say its progression of course and you need to take more. Don’t be afraid to take meds at lower than prescribed when they are new and slowly increase if you feel they are helping. That’s our experience!
Strangely enough, doctors do not show us what the impact with pharmacokinetic values of the drugs and their dosage is during the day. Probably they can’t even because they don’t have the handy app that johntPM has developed that models how levodopa levels vary as a result of almost all the medications that we take. An absolute must to get a grip on your treatment of the symptoms and your on/off / dyskinesia problems. Put the app in your favourites and use it with every change!
If my assumption is correct that you are of the female gender, what does a first name say these days, then then gender inequality could also be a reason for you to require a lower dosage. Many doctors do not take this into account, even though women generally need about 50% of the standard dosage.
Yes I am female. My neurologist is a female so I would hope she would take that into consideration but you never know right? She is actually a world renowned neurologist. She just finished stage 1 trials in stem cell therapy. Very exiting - to me anyway. I have hope that this is a big step for treating Parkinson's. Hoping to be a part of the next phase of trials if I qualify. ucihealth.org/blog/2024/01/...
Exercise!!! Don’t sit still for too long. I get up a walk every hour - even if only a tenth of a mile. And getting enough sleep. I take supplements but have no idea if they help 😜. Keto diet also seemed to help some.
I take 1.5 levodopa 3 times a day and an ER levodopa before bed.
Thank you for responding! I will try walking every hour. I do walk every few hours at work but I'll try every hour to see if that helps alleviate some of the shaking.
If I may, I'll name a few things from my experience with a brief explanation.
Long term Thiamine HCl, for starters. This is not a rescue drug, it takes a couple of months to work, but the benefits are reduced dyskinesia, more consistent energy, balance and slowdown of progression.
Lithium Orotate - It completely zapped my debilitating brain fog away after about 2 weeks.
Intermittent fasting - induces autophagy, the process by which those nasty alpha synuclean tangles in the brain are disposed of. Symptom reduction all across the board and slowdown of progression.
these are from my personal experience, so beware, your mileage may vary, as they say.
There is no magic bullet non prescription thing that I can think of that works right away at reducing symptoms, unfortunately. Well, there is one thing. For me, I dont know about anybody else, but when I play my bass guitar, my motor symptoms, such as tremors, melt away like butter. The more I play, the better I do. If I take a few weeks off from playing, I get pretty bad.
Ah, there's another thing! I almost forgot. Every day, take a little walk. Swing your arms and make big movements, big steps. Raise your arms in the air and stretch as you walk. Build up to a brisk walking pace, eventually. Breathe deeply through your nose. I have noticed when I do this, if I start out extra-Parkey (symptomatic), by the time I finish the walk, I always feel better. Going from a stooped shuffle to nice, bounding steps!
nice to meet you, staceysack. I'm 54 years old. I was diagnosed ten years ago. What side effects are you having trouble with? If its tolerable, you shouldnt deny yourself the dose you need to feel as close to right as you can. I will say that in my experience as well as the experience of the doctor that started the whole Thiamin HCl B1 therapy, Dr Costantini of Italy, taking a proper dose of B1 will help a great deal to prevent side effects of carbidopa-levadopa. I was fortunate enough to have corresponded directly with Dr C and he helped me get my dosing figured out. He has unfortunately passed away, but there is a huge amount of discussion on Health onlocked regarding the subject, and, one of our members, Daphne Bryan PhD, compiled a book that can be very helpful to get things figured out there. I got a copy for my neurologist. I think everybody should get a copy to their neurologist, as this is not taught in their training. a.co/d/e3wAvtE
Hello bassofspades! Thank you for all of the information. I do have the book and am starting my b complex today.
I will try the fasting for sure. I am actually almost there already due to my work schedule. I did not realize how it can help your brain. I don't play guitar but I will look for something similar to do as I'm willing to try anything to help I usually do my HIIT exercise in the morning and now I will add in a walk.
My worst symptom is tremor. When I am off it is bad enough that I can barely type and sometimes I'm in pain from shaking. When I wake up during the night I almost always start tremoring immediately which can keep me awake for a while. It usually calms down after an hour or so. We haven't found a solution to that yet but we are working on it.
On the subject of B Complex, at first, you might feel more energy and focus, but be aware that almost any B Complex contains gobs and gobs of B6. In normal people, B6 is great, but what it does is metabolizes levadopa into Dopamine, among other things, and that sounds good at first, BUT, and this is a big BUT, this is what the Carbidopa part of Carbidopa-Levadopa actually BLOCKS...because...what we need is for the Levadopa to be metabolized in the brain, not peripherally (in the body). Carbidopa itself doesnt cross the blood-brain barrier, neither does Dopamine. But Levadopa does, and once it gets to the brain, the dopaminergic neurons can use it to get from A to Z more easily. So in a nutshell, Carbidopa blocks B6 from metabolizing Levadopa in the body so more will get to the brain, which enables people to take a lower dose of Levadopa than they would otherwise need. Without Carbidopa, the dose of Levadopa would have to be so high that it would induce severe nausea.
Im not sure what exactly it is about playing my bass guitar that makes my symptoms go away. It could be the moving of the fingers, the concentration or just the music itself. Maybe all of the above or maybe just the joy I get knowing that I can still do something that I love and am good at. Im really just grateful that I can still do that! If the good Lord ever takes that away from me, I'll be a basket case, for sure.
Great to hear that youre bigly into exercise. That is great for countering PD. You would surely be worse faster without doing that. HIIT is really tough stuff, I used to do it, but its out of my league, now. To much for me to recuperate, I was getting knee and back injuries real bad, missing work, requiring surgeries and ultimately I had to go on disability permanently (but I was a Cath Lab tech, which became too difficult for someone with Parkinsons! but thats another story!!) Dont overdo it, take it easy. At least thats what the 90 year old at the gym tells me. He's been around the block, I listen to him!
Sleep is tough. Hard to say what will work because its not a one size fits all thing. But a couple of things that are safe to try are Magnesium before bed, Chamomile or Velarian tea, and on really bad days you could try a little (25mg) Benadryl (Diphenhydramine) which can make you sleepy and has a bonus effect on tremors! I wouldnt recommend using it all the time because it has long term side effects if you read the warnings on the bottle, but once in a while it should be ok to try. This is also the ingredient in Zzz-Quil.
I hope something I suggested will help you. We're all in this together, here, so its great to have a support group where we can share our experience to help each other!
Instead of B complex, consider trying 500mg B1 (Thiamine HCL) per day for 2 months and see how it goes. Take it with a meal but not with caffeine, preferably earlier in the day so as to not mess with your sleep. After 2 months, consider going to 1000mg per day if you still feel terrible. Keep an eye on your blood pressure. The most common side effect is agitation, but thats in rare instances, and even less common are allergic reactions to the filler ingredients. Read Dr Bryan's book, its very thorough. She's always around on here and she's great at answering questions about it, too.
Dr Costantini recommended taking a video of yourself doing things like getting up from a chair and walking and the Pull Test for a baseline to compare with after 2 months, because the effect comes on so subtly that you might not realize just how much it is doing for you. The Pull Test is when someone stands behind you and yanks your shoulders back, and you take a step or two, or more, backwards to get your balance. The improvement that is expected in someone with Parkinsons is going from more than one step down to just one step. There are videos of this as well as before and after on youtube. youtube.com/@antoniocostant...
Thank you again for all of the information. This community is so awesome! I imagine many of us would be lost without the help of others like you.
Ok - well I will order the B1 then and start there. I do have the book & have read it already. I do plan on making the videos tonight.
As for HIIT, I modify it to avoid injury while keeping my heart rate up. I've already had shoulder surgery once and I don't ever want to do that again
I am in the process of CBT-I for sleep. It has helped as I am sleeping about 1 1/2 hours longer than I was before so I can function much better now.
As for work, my goal is to work though 2026. Luckily, my work is very flexible with me and my health issues. I have 2 boys, 1 in college and 1 headed there next year and I'm hoping to be able to help with the costs.
good luck with everything! And just in case, get the max on your disability policy if they offer one at work. It really came in handy when my time came to bow out of the workforce.
Since last week I was taking 400mg sinemet per day. It is 3 days I take 300mg. I woke up one day after my birthday and tell to me: " I want to heal from PD!". So I gave myself an injection of B1. (I finished to read the book Cant-Hurt-Me- by David Goggins; our mind is very powerful!).
From that day my therapy is this:
6,00 - B12 and breakfast
7,00 yoga (10 minutes)
8,00 - Sinemet 100mg
8,30 swim or run or walk or cycling
10,00 Opicapone 50 mg
12,00 lunch
14,00 Sinemet 100 mg
19,00 dinner
20,00 l-theanine
21,00 Sinemet 100 mg
22,00 GABA 750 mg
I have to adjust B1 therapy: 1 injection every week or 1 every 2 weeks.
For the moment my symptoms are improving....
I also work on the rigidity of my right foot that can appears in the morning, moving the fingers, using my mind to relax it, or putting it over my belly.
Can I read that you practice fasting......do you practice the carnivore diet? .......many doctors and nutritionists say it works well......I think what you do is very good, there are studies that have shown that the body assimilates injectable vitamins better than oral vitamins when you have a certain age
Being truthfully honest, DBS. However I’d I was allowed to advise, I’d take up a new hobby, one that required some acquired skill for new neural development.
Thank you for your honest input. I truly appreciate it!
I have read that most people are grateful for DBS as it has helped them a lot. I'm open to that someday. I think I might try learning an instrument for now.
I am also going to start fasting. I did not read about it much or know the benefits of it until both you and bassofspades mentioned it.
The Guru is 38yearoldmale. He’s experienced some astonishing successes with fasting and exercise. Trouble with fasting is that you have to be hungry a lot of the time which is probably only one down from having a chronic disease 😂.
From personal experience, I can say that testing your vitamin B levels is very important, with B6 being crucial for PD, as bassofspades already noted. Make sure that ALL B vitamins are balanced within the recommended reference values. Regularly check these levels, especially when using C/L. If necessary it may be wise to supplement only with a low-dose B-complex.
The 'jury is still out," on these tx's I am trying or have tried: Infared sauna, cryofreeze, excercise HIT workouts, bicycle 2-4x's per day, (stationary bike), massage, citicoline, am going to try PEA. thiamine/B1. It is frustrating!!
b1 seems to have most consistent result. It is a little tricky and unusual with dose. If interested start on b complex low in B 6 and magnesium (not oxilate) as they say these should be take first. That will give you time to research it.
My mother and I got significant remission with lithium ornate just 5 mg per day. It took about six months. My mother smile came back, and she began at to be able to step over objects. That is worth trying eventually but the effect on others in the forum does not seem to have been that good. Although my. mother’s symptoms improved. She actually developed the tremor while on lithium.
I got amazing results from long-term fasting 5 to 8 days and doing this repeatedly. I got tired of doing that so now I do the fasting diet by prolog. I haven’t done the fasting diet enough times to know for sure that it will help as much as the fasting however, it has good data in that it increases stem cells just like fasting does.
my understanding of the data in general on fasting related to metabolic disease, and muscle is that it is good for people who are overweight and have fat in the liver. Some people lost too much muscle if they were been to begin with.
I would try rectal melatonin, as this does have evidence behind it, and melatonin is an extraordinary antioxidant. However, it can cause worsening metabolic health and lead to diabetes. My blood sugar is too high to use it. It isn’t well absorbed orally, and apparently ends up in the liver, and the supplements are difficult to trust regarding dose.
I have several other things I want to try, but I can’t everything at once.
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LOW TO HIGH PD SYMPTOM discriptions 
Symptom Free Essentially
1/2 dose of medication
