Here is what I will try for wife PD

[PHILCAM]

I haven't had success with the typical meds for PD

If fact - the NeuPro patch and the Rytary made her worse

So based on what I am learning from this community, I SHOULD try the following

1 NAC

2 B1 - high does thiamine

3 Lithium

4 Ambroxol

5 Mucuna Pruriens

Questions - -

Are there those that have tried these in combination and if so - results?

Is there a strategy in introducing these - or staggering these?

Are there suggested dosages - or is it a varied thing?

I am alittle concerned that I am attempting to throw the kitchen sink at this

I am so glad I found this community that are in this battle also and hopefullng give guidance

[Rufous2]

Yikes! I know you're eager to help her, but if you try everything all at once, you'll have no idea what's working, or what's causing side effects, if she has any. Please consider adding one thing at a time to the PS128 and red light helmet.

Based on the reports of lots of people here, I suggest starting with B1, as it seems to have gotten the best results for the most people. Once you've established her "sweet spot," you'll be able to add in other things at an accelerated pace.

Others might disagree on which supplements to incorporate first, but I think we'd all agree that even a little bit of exercise would be helpful. Maybe a physical therapist could help you discover how to do that safely, and counteract the falling backwards.

Best of luck, she's very lucky to have you in her corner!

[PHILCAM in reply to Rufous2]

Yes - Yikes - thanks for your reply

There is a lot of information out there about possible help

My highest priority for her is balance - standing up and walking

We will start with B1 - and get more information on the others and study more

We live in Florida, so most days we can get outside and try to walk with her walker twice a day - for now, just down the block and back

Thanks

Phil

[Gallowglass in reply to PHILCAM]

Physical therapy by a person who knows PD is essential. They can help with balance and walking . She needs to be as active as possible. Let her take on tasks she wants to try but just be quietly present in case she falls or gets stuck.

She may not do tasks like housework or gardening well but accomplishing small tasks can help build up dopamine which is as good thing!

[Nikosmom in reply to Rufous2]

Good answer.

[pdpatient]

  PHILCAM Whatever you do, DO NOT STOP Rytary or other Parkinson's medications without doctor monitoring. Especially Rytary or Sinemet. It can be particularly dangerous and very serious.

As for the supplements, proceed gradually and cautiously just as  Rufous2 e has explained.

[PHILCAM in reply to pdpatient]

Hi pdpatient - thanks for your reply

Rytary was stopped after 7 days because of bad side effects and we notified our neurologist

I am here looking for experiences that others are having so I can have better info in proceeding with treatments

So far I think I will try B1 suppliment to get started

Phil

[Gallowglass in reply to PHILCAM]

Is she taking CL?

[PHILCAM in reply to Gallowglass]

I believe from the comments that CL means carbidopa-levodopa

No, she is not taking CL - it seems that it makes things worse

We tried two treatments - NeuPro patch - 10 days - and then Rytary - 8 day

[Gallowglass in reply to PHILCAM]

The classic CL is a small yellow pill usually delivering 25 mg of carbidopa and 100 mg of levodopa. Normally they start you out at about three pills a day and then they increase it as needed. It seems very odd that they started her out with anything else. The basic CL works for me but the other forms don’t.

[Rufous2 in reply to Gallowglass]

I wondered about that too, especially since she weighs 86 lbs! It seems like some people do best starting with a fraction of a "normal" dose of medication, but that would be hard to do with a patch or timed release formulation.

[PHILCAM in reply to Rufous2]

The protocol was 2 mg patch for 1 week and then transition to 4 mg - when she got to the big patch - is when she couldn't tolerate the side effects

She has always had problems with dosage being too much for her

[LAJ12345]

have you checked her other vitamin levels. B12, folate, homocysteine, d?

She possibly needs magnesium too.

Also omega3 try Carlson elite dha for a few months

My husband has found Hardys daily essential nutrients with added vitamers very helpful too.

[PHILCAM in reply to LAJ12345]

Janet is taking CoQ-10 and D3-K2 and B12 complex drops in the AM and Magnesium drops at night

I want to start her on B1 - there seems to be consensus that this is good

[LAJ12345 in reply to PHILCAM]

Good. Yes b1 is a good addition. B2 might help too. But definitely add the fish oil too unless she is eating lots of oily fish eg sardines or salmon.

[LAJ12345]

have you got her exercising?

How long has she been diagnosed? What are her main symptoms?

Have you made and diet changes to remove additives, refined foods, sugar, try gluten free, reduce meat, dairy? Eat mostly vegetables, nuts seeds, green leafy vege. Eliminate most takeaways, deep fried foods, and other junk foods.

[PHILCAM in reply to LAJ12345]

Main symptoms now are balance - standing up and walking

We try to walk each day - 2 walks, one in the AM and one before dark

She does good with walker - not so good with the cane

I believe that some of this is related to her being scared that she will fall again

We are fortunate that her doc has ordered PT and Speech therapy once a week IN-HOME for 6 weeks

Regarding diet - she eats healthy - doesn't do junk food snacks - but she likes sugar - trying to sub honey

[LAJ12345 in reply to PHILCAM]

Honey is sugar really. If she can eliminate all sugars it could help. Your tastes do change after a while. I now find sweet things unpleasant .Sugar could be feeding a bacterial or fungal infection in her intestines. It might be why she craves it.

Does she eat a lot of green leafy vegetables? And lots of fresh herbs and spices. We've ended up doing a complete diet change and my husband is much healthier for it

[PHILCAM in reply to LAJ12345]

I always thought honey was a better sugar 🍯

and yes, we both need to eat more of our veggies

[LAJ12345 in reply to PHILCAM]

Well it has some extra compounds which may be of some benefits but certainly couldn’t say it’s good for you. It is mostly glucose and fructose.

medicalnewstoday.com/articl...

If you cut out all sugar and go cold Turkey for a few month vege will taste more pleasant and become easier to eat. Actually sweet potato and pumpkin start tasting overly sweet to me.

We have 1 date or fig or prune as a dessert if we need something sweet. They have fibre and other nutrients and taste very sweet when you are off sugar.

Maybe a new year resolution?

[1LittleWillow]

FYI, mucuna isn't a supplement like the others you listed. It's a natural (or semi-natural, depending on how it's processed) substitute for prescription Sinemet (carbidopa/levodopa). All it can potentially provide (just like sinemet) is short-term relief from symptoms. Some people find that it works better than Sinemet, and some people prefer it just because they don't like pharmaceuticals. I use it on an as-needed basis for symptom relief because because Sinemet gave me too many side effects. I am tremor dominant, and it works well to control tremors for me. I take it with a tiny bit of carbidopa prescribed by my MDS. There are many different brands of mucuna with different percentages of L-dopa.

[PHILCAM in reply to 1LittleWillow]

This is what I order from Amazon

l-dopa Powder - 99% Mucuna Pruriens Extract - Natural Velvet Bean - 2.4oz. - 240 Servings

[RonB1]

What did the Neupro patch do to make things worse? What happened?

[PHILCAM in reply to RonB1]

VERY RIGID ARM MUSCLES - EXTREME FATIGUE - VERY DIZZY - NO BALANCE AT ALL - CAN NOT STAND WITHOUT SUPPORT - VISION BLURRED

[JeanieBeanie]

31 years since diagnosis my HWP takes Sinemet Plus and Mucuna Pruriens which we wouldn't be without. It gives him a quick burst to come on but even better when he is having an 'off' day I give him a double dose (2 teaspoons) in something fizzy.

[park_bear in reply to JeanieBeanie]

PHILCAM - Note that JeanieBeanie is referring to natural mucuna bean powder, which is different from the concentrated extract you are using. The latter can cause nausea.

[PHILCAM in reply to park_bear]

Not using yet - just orderd

Thanks for the heads up - still trying to figure out "what is what?" in this PD world

These differences matter - I will study in more detail about this

[park_bear in reply to PHILCAM]

The purpose of carbidopa in the levodopa carbidopa combination is to prevent conversion of levodopa to dopamine prior to passing through the blood brain barrier, because this can cause nausea. The extract you have is almost pure levodopa. The mucuna bean contains about 5% levodopa, and the remainder contains cofactors that may prevent nausea.

[PHILCAM in reply to park_bear]

Just bought from BioPure - Ingredients: Mucuna (Mucuna pruriens) Seed Powder 6g.

[1LittleWillow in reply to PHILCAM]

Just be aware that mucuna behaves, in most respects, like Sinemet. You can get nausea, as PB pointed out, as well as dyskinesia when using it. Err on the side of caution when starting out and try to find the smallest dose that provides symptom control. You have to play around with it to find your ideal amount (and that amount could change over time) and then figure out how long you can go between doses. It's also like Sinemet in that it often doesn't work if you've eaten protein or a large meal too close to taking it. I really struggle with timing meals around doses.

[PHILCAM in reply to 1LittleWillow]

Thank you so much for this insight on the mucuna - I am also thinking B1

[Lochie2003 in reply to JeanieBeanie]

Hi JeanieBeanie, I am also new to this group & have hwp early stage. He takes Madopar and Sifferol. Tried Sinemet but unfortunately caused Alopecia. Interested in Mucuna Pruriens, how does this help your hubby around his symptoms and what brand do you use as there are quite a few varieties

[JeanieBeanie in reply to Lochie2003]

We use Natures Root 100% organic. I give him a teaspoon in some flavoured juice with his meds. Oi think it brings him on quicker. On bad days I double the dose and add something fizzy to it. Been using Mucuna for at least 15 years. He was diagnosed 31 years ago.

[Lochie2003 in reply to JeanieBeanie]

If you don’t mind me asking, how is your hwp going after having it for 31 years. Is he still reasonably independent?

[JeanieBeanie in reply to Lochie2003]

He was great til about 18 months ago. He had DBS in 2005 which has helped but he had a bad fall and I think it affected him mentally. He lost his confidence which affected his walking and his balance is not good. We still go abroad 3 times a year. He struggles to get out of his chair so he is reliant on me. He is able to walk in the house but we use a wheelchair for outside. The main problem is his meds last only 3 hours at the most and his tremor is very bad when he is 'off'. Luckily he has never suffered with depression. We get by.

[PHILCAM]

VERY RIGID ARM MUSCLES - EXTREME FATIGUE - VERY DIZZY - NO BALANCE AT ALL - CAN NOT STAND WITHOUT SUPPORT - VISION BLURRED

[CaseyInsights in reply to PHILCAM]

First off you need some markers of where she is. Attached is a panel of test recommended by a well know Parkinson doctor. Your GP can set you up will a lab and help you interpret them.

Additionally I would ensure the magnesium supplementation is 100% of daily requirements and begin the B1 therapy along with a low dose B-complex.

I would not worry too much about the ‘sweet spot’ for vitamin B1, but rather she gets up to 500mg per day. You may need to start with 100mg capsules.

Magnesium and B1 are a good start. But these are complimentary therapies. You will not get rid of the chronic tiredness without Levodopa.

Magnesium:

Helps with rigidity and cramps. It is a co-factor allowing B1 to work its magic.

Vitamin B1:

Vitamin B1 (Thiamine) plays a crucial role in nerve function and energy metabolism. A deficiency in thiamine can lead to neurological symptoms such as:

• Dizziness and Balance Issues: Thiamine deficiency can affect the nervous system, potentially leading to coordination problems and dizziness.

• Muscle Weakness and Fatigue: Without adequate thiamine, muscles may not function optimally, resulting in weakness and fatigue.

• Vision Problems: Neurological effects of severe thiamine deficiency can include blurred vision or eye movement disorders.

Test suggested for Parkinson patients

[limcheeese22]

my personal exp

ambroxal - tried 1 year no effect

NAC - trying now

[PHILCAM]

Thank you - good to know your exp - I think I start with B1