After much research my husband (diagnosed early in 2023) is about to start on sublingual B1. As per Daphne's book we plan to document his success using pre and post video of his gait, the Pull Test,and the Unified Parkinsons Scale.
Here is our question:
Should we do the testing during "on time" with C/L...or when he is betwewn doses of C/L
and has little to no medication in his system??
His symptoms are still mild, but his gait and balance is definately improved with 2x a day of 1 and a half pills of 25/100 C/L.
Thanks for feedback and we will share our results with you all on our B1 journey. We plan to document his B1 therapy trial as scientifically as possible. Starting dose wil be 3 times a week of 100 mg Superior Source Micro lingual B1, as per Daphne's book.
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Specterishot
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IMO the pull test is more practicable and safe to do on On med.
Then you have to consider that it could be difficult to obtain a total Off med, there is always a residual med once you start daily therapy.
As the years go by it will be difficult to stay Off because, beyond the progression of the disease, the body tends to stiffen.
Even in On you should see the difference, I would add that caregivers have some difficults and do not always understand all the facts of the PD, only a PwP knows them well. This applies to all diseases of course, but PD is a very complex disease.
Your plan sounds well thought through and I look forward to hearing you join our success story with b1. Have you already started with bcomplex with low b6 and your choice of magnesium or do you plan to add those in when you find b1 sweet spot.
Thank you Windemere1 for those important reminders.Yes, we have changed his B complex a few weeks ago to a Naturemade Super B complex with only 2mg of B6
He has already been on Magwell which contains 3 types of bioavailable magnesium. (Also great for constipation). We r now only going to add the sublingual B1.
We are hopful for any new positive changes. We will make no other changes once we start the B1 so we don't muddy the waters!
Will post in a few weeks about how he tolerates the B1 and post again, after giving it some time so we can retest to more clearly see and document changes. We r planning to do his pretesting today and start the B1 tomorrow. We will test and retest about 2 hours after his morning dose of C/L.
Thanks SO much for your reply! We have read enough testimony to feel this is worth a try. Really appreciate the support.
The starting dose is adjusted to 50 mg sublingual. see Facebook group "Parkinson's B1 Therapy". Look for new information there. The group is led by Ms. Daphne.
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