We just returned from a visit with Dr. Perlman last Friday at UCLA. Richard's SARA score stayed pretty much the same which is encouraging.
Dr. Perlman wanted Richard to start taking a new supplement called Trehalose which is a sugar derivative. Trehalose has been shown to help with Huntington's Disease in preventing the clumping of proteins in the cells. One of the hallmarks of MJD is also clumping of the proteins so Trehalose should theoretically help stop this. Moreover, Trehalose is fairly safe with few side effects and is very cost-effective and readily available.
Here's a link to the website of Neurocoat which is a 100% Trehalose supplement. This article has details on the recommended dosage. We have already placed our order.
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Hi Richard and Lily,
I read your blog since your chinese trip and I would like to thank you to share your feelings and to maintain it with such useful posts ! Now, I would like to ask you a question. Is the trehalose's treament working ? Do you feel better since you take it since two months now ? My girlfriend has the same disease as you and I would like to know if she might start it too.
Thank you again for your blog !
Take care
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