dystonia help

[Aucks]

My mum has had Parkinsons for 6 years now. She started sublingual B1 therapy 3 months ago, and I have seen an improvement in her sleeping, urinary frequency and energy. But her biggest problem is dystonia. Her right hand is clenched, if we try to manipulate it in any way she shakes. I have tried a hand splint, she doesn't like them because she can't get up with it on. In the past she took Mucuna puriens, which released her from a nasty spasmed piriformis. But if she takes it now all her symptoms get worse.

Has anyone had experience with micro dosing of dopamine?

Is there a dystonia recovery program that would help? Or a hand splint that they have found useful?

Any tips would be so appreciated

[park_bear]

Some products labeled "mucuna" are actually extracts that are mostly levodopa. Unmodified whole mucuna bean powder is about 5% levodopa, which is the version of mucuna that you want. Using this you can easily adjust the dosage downward.

[Aucks in reply to park_bear]

Thanks for that. I have been using an extract. Will see if there's a good whole bean powder option

[Reetpetitio in reply to Aucks]

From what I've read, the amount of levodopa in whole bean extracts varies, hence people standardising it via an extract.

However - a report I read on tests of macuna supplements showed that the minimum quoted on the label of various supplements was often hugely lower than the actual dose in the capsule.

So maybe the last time your wife took it you hit a strong batch. You might try macuna again at a lower dose. Someone recommended Piping Rock at 15% extract, and you could try opening it up and taking half?

Another thought: Macuna has been used for centuries in Ayurveda and they have a lot of experience in treating Parkinsons. How about looking for an Ayurvedic doctor?

[Note - do Not fall for Indian online scams of supposed 'Ayurvedic doctors' selling expensive packages - I nearly did! Thank goodness for Trustpilot and online review sites. These scams target people googling for Parkinsons and Ayurveda as Ayurveda is known to get good results with neurological conditions.]

[Aucks in reply to Reetpetitio]

Good tip with Trustpilot, so easy to lose money with Parkinsons

[JeanieBeanie in reply to Aucks]

In Uk I buy Natures Root. 100% powder and organic.

[JMDean]

I recently saw that sensidose, a Swedish microdose platform for carbidopa/levodopa , is now available in other parts of the EU and headed to the US. But that’s probably overkill.

You could simply dissolve crushed C/L in juice and administer it in intervals to achieve the same effect. It may take some trial and error so I’d coordinate it carefully with your doctor (hopefully a movement disorders specialist).

The doctor could also administer some botulinum toxin to relive the contractures a bit but I’d work with a PT with PD training first to see what’s possible before taking that step.

[Aucks in reply to JMDean]

Interesting about sensidose, will see if I can mine any info there

[jeffmayer]

I find for me only levadopa helps I get it in my right foot and it can be painful

[mishod]

Why not use any of the carbodopa/levodopa formulations. It works well, for me at least.

[rebtar]

if her hand stays clenched (this happened with my dad) make sure you keep her fingernails short, or use the splint. If nails dig into flesh, she could get an infection…

[rebtar]

look up Joaquin Farias, dystonia recovery. It’s a pretty intensive program, may not be appropriate for your mom. It’s all online through videos.

[Aucks in reply to rebtar]

Thanks for that, I'll look that up

[perilousseas]

My 93-year-old dad had a completely clenched hand for several years before he passed away, and we tried a number of things including going to a hand therapist for a while. She created a custom splint for him, but it was hard plastic and he didn't like to wear it. We had the most luck with the Rolyan Sof-foam Palm Shield Contracture Cushion that we got from Amazon.

He enjoyed a hand soak in very warm water (with optional magnesium flakes dissolved in). We'd ask him to splay his good hand, think about how it felt to invoke those muscles, and then try to splay his clenched hand. You could see the fingers moving a little. This soaking and splaying relaxed his hand enough so that we could massage the fingers and open the hand about an inch to fit the palm shield inside or cut his nails. In addition to the nails digging in, you also have to watch out for pressure sores where the tips of the fingers press into the palm, so some kind of pad does need to be kept in there. His fingers were so tightly pressed together that sometimes we needed to treat him for fungal infections. The palm shield includes finger separators that help with that.

You have to watch out for the other hand starting to clamp down, and after a while we could see that was happening. We were able to stave off the new hand clench. We'd put a rolled up Ace bandage in that hand when it stayed closed too long, have him move his wrist back and forth, and use the hand to perform a task.

Good luck to you!

[Aucks in reply to perilousseas]

Thank you, I'll try all of that. Exactly what I need