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!
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!
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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