Charles H Levin

I was recently tested for genetic mutations to see if I carry the lrrk2 gene; I do. This now means I’m eligible to be part of a study by Denali Therapeutics that seeks to repair that genetic defect (at least that’s how I understood my doctor’s explanation).

I’m still unclear about other details as are the people at Cedars Sinai in LA who I’m…[Read more]

I was also going to post about the UCSD study (posted above by Bob Hodgson) that popped up last week on numerous health news feeds … This does appear to be very exciting news in that the researchers accidentally got mice to regenerate dopamine-producing neuron cells … all the mice recovered from their PD symptoms which never came back for the…[Read more]

I am doing something called Neuroboxing … kind of an evolutionary successor to RSB in that it can be tailored to other neurodegenerative diseases like stroke, MS or traumatic brain injury …

I’ve been doing it about six weeks and have noticed less rigidity in my neck and some improvement in my balance. I also notice that typing with my left…[Read more]

Joe E … Reading back on your first post … I quit playing in March (three months before diagnosis) as playing was becoming more difficult … I didn’t know it at the time, but I was experiencing slowness of muscle movement in my left hand and leg/foot … Controlling my hi-hat pedal had become difficult for at least six months or a year before…[Read more]

Hi Jo S.

Just re-read your reply … ET diagnosis 20 years ago? And PD this last February? That’s a long time … twice as long as me … what were/are your other PD symptoms and how long ago did they appear …

Re: Linda’s diagnosis … https://www.cnn.com/2019/12/28/entertainment/linda-ronstadt-anderson-cooper-intv/index.html

Hi Jo S.

Yes, I now experience both types of tremors, action and resting. I also have a head tremor, which is consistent with ET. I found one medical abstract on BTP after my second opinion. It said that patients with this diagnosis experience both types of tremors.

As I recall, the study was trying to determine if PD operates on a spectrum,…[Read more]

Re: Linda .. In a few scant interviews before and during the release of the documentary this year, Linda shares that her diagnosis is actually Progressive Supranuclear Palsy … According to my neurologist, this is a cousin of Parkinson’s and not completely the same thing … in some cases, patients present with elements of dementia, which does…[Read more]