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Sharing symptoms and experiences

Parkinson's Disease | Last Active: Dec 15, 2022 | Replies (21)

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@hopeful33250

Hello @tedalmon,

I appreciate you sharing more of your journey with PD. I found your reference to "focused ultrasound" interesting. I was not familiar with ultrasound being used to treat PD. In case other members of our group are not familiar with it, here is some information from the Michael J. Fox website:
--Focused Ultrasound
https://www.michaeljfox.org/news/focused-ultrasound
You mentioned that you are trying Primidone to treat the essential tremor. How is that working for you?

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Replies to "Hello @tedalmon, I appreciate you sharing more of your journey with PD. I found your reference..."

First the Primidone, I am not yet up to the maximum recommended dosage and the treatment is only intended for the essential tremor in my dominant hand so I will still have the resting tremor in my other hand from the PD, but that is less bothersome. I would rate the Primidone so far as somewhat effective, but we'll see as I reach the max dose in another week.

As for (high intensity) focused ultrasound, it is being very aggressively promoted by a company called Insightech I believe, and is offered at what appear to be a network of medical centers as franchises where the equipment is in place and the practitioners have been trained. It was recommended by the movement disorder specialist in RI where there is a center at RI Hospital, but not strongly recommended at Mayo/Jax where they offer DBS as an alternative. FU is much less invasive, but DBS is potentially reversible if there are unwanted side effects, at least in theory. FU is a non-invasive outpatient procedure where DBS is brain surgery though, so difficult choices. There have been some rare reports of side effects from FU but the Brown neurologist said they are usually temporary, and that FU can now be performed for both sides of the body where it previously was limited to one side. There would be a delay of a month or so between separate procedures to assure there were no side effects from the first.

For patient with the tremor dominant form of PD like me, it is an interesting but a bit confusing choice of treatment paths at this point. Here in Florida there are FU centers in several major cities like Miami and Orlando, and also Delray Medical Center. if you do an on line search for information on the procedure be prepared to be contacted by the company's marketing team, but FU is a legitimate alternative treatment that deserves to be considered in some cases.