HI Forum
It is about 6 months since my surgery this past July. Let me recap where I was prior to surgery. I was taking 2100 mg of sinemet per day 25/100 plus 3 50/200
extended release for a total of 2700 mg. At one point I was also on 8mg Requip
extended and 6- 2mg regular. The dosages were increased as the symptIoms progressed. Early in 2013 I ended up in the psych ward of a local hospital for 6 weeks for paranoid delusions and hallusinations. The Dr's on staff (mostly nurses and aides) new little about Parkinsons. Before I could be released I had to insure my home was suitable for disabled. I spent one month in a nursing home home hell. My on and off time flucktuated as did my time in th e wheel chair. I nevr got my meds on time and no one understood why I could walk sometimes and not others. This place had a beautiful website but was actually for the mentally ill. I likened it to "one flew over the kookoos nest" Fast forward...The next year I continued to get worse with more off time than on time. I needed custodial care. Being in a wheelchair is no picnic especially for PWP because of our legs freezing up. Moving was very hard.
On August 5 2014 the stimulator was turned on and I got full use of my legs and body. I can dive again and my cognitive ability is back. The medication has been reduced to 1200 mg sinemet an 1- 50/ 200 total 1400. No comptan no Requip(which by the way made me very hypo manic) February 4 is my 4th tune up with the stimulator. Before DBS my worry was how do do simple tasks. Now my worry is how long it will last. Today I got my life back, the one I tried to take in early 2013.
Damon

So happy for you. Thelma

What an ordeal he has brought you through! your story is so encouraging and uplifting. Thank you for sharing. Best wishes.

Hi Damon,
It's really good to hear from you and especially such good news. My thoughts and prayers have been with you since you first told your DBS story. Please stay in touch you give us all hope.
How is the diet going? I'm still on low carb following Dr. Perlmutter's "Grain Brain" diet.
I'll fill you in on a couple of clinical trials I'm trying to get into. I've been in touch with the administrator of the TMS trial at NYU. She told me I had to be on sinemet which I am not. She was going to ask the head MD if I could participate anyway and still hasn't heard back from him. I'm not really too hopeful about being admitted to the trial. This is a preliminary trial where the results are submitted for funding for a bigger trial. That's what I was told. I would have to take a bus up to NYU once a week for six weeks to participate. So not too sure I'll be all that upset I'd they say no but if they say yes I'll probably do the traveling. No funding is available for participants in this trial.
Trial #2 is at Georgetown University Hospital. I'm seen there by a movement disorder specialist and have been hearing about this trial for over a year. They are very excited about this trial. It's using a drug called Nilotinib which is used to treat leukemia. It has been tested on animals and now PWP to decrease and clear the brain of the damaged protein that accumulates. To say they are excited about the results they are getting early on is an understatement. Right now they are testing people with advanced Parkinsons for 9 months. There are three spinal fluid tests done to determine the level of this protein they are trying to eliminate, before, during and after the trial. After this trial then there will be a trial for early, moderate, and advanced PWP starting around October or November of this year. They have told me I'm eligible to participate and they will give me more information on the trial when I'm back to see them in May. The trial now in progress is fully funded by private donations, the patients. MJFF is waiting for the results of this first trial before deciding if they will do any of the future funding. That's pretty much all the information I have on this trial at the moment. I'll let everyone know what's happening after I go back in May.

Take care and good luck with your tune ups.
Betsy

My Best Wishes to you all.

Hi Damon -

Thank you for posting your positive experience with DBS. It truly does give hope to the rest of us. I've had PD for about 7 years now, and I just started taking Sinemet. Wouldn't you know it - just a half of a pill give me dyskinesia... lucky me! My Dr says I may be a good candidate for DBS, he already offered me a referral. I have a question for you... where would you say you are percentage wise with PD? Meaning - if 100% is zero PD symptoms, as in 100% "normal" - are you feeling you're at 75%? 50%?
Again, I'm so glad you are feeling better! It's wonderful to hear of people feeling better over time instead of feeling worse!

More details regarding the trial of Nilotinib -
http://https://clinicaltrials.gov/ct2/show/NCT02281474

Hi Anagirl
That is a difficult question. My off time became less and less sometimes 10 minutes apart. When the meds were working I was at 100 % and when off I was at 20%. I could not live on my own. DBS provides quality of life but does not slow progression. For me not being able to walk 80% of the time was a big deal. DBS is not supposed to be very helpful in this balance issue but in my case it was. I hope it lasts because I can not afford 24 hour care and do ot qualify for medicare. This causes major anxiety. I hope this helps you
Damon

Thank you Damon - this is very helpful!