[ROBERT SUTCLIFFE]

I’m a 76 years old man. 9.5 years since diagnosis. DBS both sides. Reduced my carbadopa levadopa by 42% since surgery , in addition to rigorous exercise 5-7 days per week. The exercise is more important than the DBS for slowing your progression. Also, I’m taking Ritary, time release c/l which helps smooth out medication cycles.

[ROBERT SUTCLIFFE]

I see elements of truth in each of these responses. The point is,  everyone juggles c/l to get the best results. In my case: I’m 75, diagnosed 8.5 years ago. Started struggling with c/l effectiveness about four years ago. Tremors vs dyskinesia. I work my ass off in the gym and yoga studio 5 or 6 days per week.  Very rigorous interval training, Rock Steady Boxing, and yoga 3 or 4 times per week. I mention this because, if you aren’t doing rigorous pulse raising exercise, (did I use the word rigorous here?) you are missing a major factor in the effectiveness of your meds and to slow down the progression of your symptoms.  Almost 18 months ago, I had DBS surgery on the right side of my brain. Things are advancing, so in about a year, I’ll have the left side done. Having said all this, you probably are thinking that I’m in bad shape. Quite the contrary. My neurologist concluded , after the battery of physical and psychological testing for DBS, that my biological age is 65. Friends say that on many days, they can’t tell that I have Parkinson’s. Of course, that’s based only on what they can see. But, all in all, I can do more than most 75 year olds, which is my goal., to be able to do anything that I would have been able to do without the disease. I road my bicycle 14 miles with friends last Friday. I have a new goal. I climbed the 35 foot rock wall at my gym to celebrate my 70th birthday. I wanted to do that again for my 75th, but I started too late.  So, I’m going to scale it before my 76th. As I occasionally say to myself while boxing, f$@k Parkinson’s.

[ROBERT SUTCLIFFE]

Jack Edmondson , FUS is a procedure which burns permanent hole in your brain. Any future, presently unknown, treatments or cure for Parkinson’s will not work. The brain has been permanently damaged.  When I asked my neurologist about it, he emphatically told me he would not ever endorse it for those reasons.
However, he did recommend me for DBS. I read everything I could get my hands on and talked to several people. I eagerly moved forward with it 18 months ago. Had it done on the right side of my brain. It improved my quality of life almost immediately.  I’m 75, was diagnosed 8.5 years ago. I used carbadopa levodopa almost from the start. After about five years I started with dyskinesia. Having off times frequently and lapsing into dyskinesia frequently, as well. So, I went for DBS, which has improved my tremors and dyskinesia by 90 percent.  And, I reduced my meds by 40 percent. Unfortunately, the disease has advanced on my right side, so during the next year, I’ll have my left side done. Folks, for me it’s purely a quality of life issue. I wasn’t that bad , but dyskinesia and tremors were very annoying to me. I was fully awake throughout the surgery and watched it on a screen right in front of me. There was 10 minutes of discomfort when they put the halo on. Ladies, how many hours of pain do you go through in childbirth?  Anyone can get through it. Just relax and breathe deeply. Drilling the hole in the skull is very loud for two minutes. When I think about the surgery that I’ll have again, I don’t think about the short uncomfortable moments of the surgery. I think about postponing a walker, a wheelchair, and avoiding the nursing home.  Even if it doesn’t change the time frame for these things, it’s about my quality of life until I get there. The risk of infection or hemorrhaging is less than two percent. But, first you must qualify. It’s a lot of cognitive,  psychological, and physical testing that takes about six months to get through. Then, the waiting list of up to six months. Also, find a great surgeon who specializes in DBS and is experienced. Well, I’m looking forward to my next surgery.  It’s not for everyone, so do the research and have confidence in the science.