Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I have gone thru the preliminary off meds study and psyche evaluation, The Drs at Mt Saini new York city seem to be very experienced . This is good. I have not picked a date to start yet as I am enjoying the fishing season . My concern is that I had a virtually symptom free day. It felt great, My thought was do I realy need this. followed by a particularly rough day. Meds no longer work consistently. I am Moving forward I am reviewing the situation and I think I better think it out again (Tevya).
Tainted with a lot of whinging, swearing, complaining., and laughing at myself for what is driving me crazy
Thanks & good health - Bob
I will summariize my case below. If you want more info /details, let me know.
Last November, I was getting ready for DBS in December
I was a "med mess" as well - they weren't working consitently, i was dropping off during working, having freezing spells and crippling dystonia and when took med so get back on was experiencing dykinesia and manic behavior.
My neuro and 2 other "local experts" said I had hit the "5-yr limit" on levadopa treatment and time to get DBS.
But based on my reading and discussions with several satisfied , successful DBS patients, I felt very uncomfortable with the decision.
FIRST OF ALL - I DID FIT THE AVERAGE DBS PROFILE
1) All of the "satisfied" patients had been suffering terribly from painful tremors which were indeed greatly reduced by DBS.
2) None of them had ever really had any good response to meds before surgery.
3) many developed gait problems after DBS surgery.
in my case (1) I have never had any noticeable tremor and
(2) I responded well to Sinamet / Stalevo - i.e, the meds left me basically "symptom free" for almost 5 years.
2nd I HAD RECENTLY READ THAT "5-yr" LIMIT ON LEVODOPA EFFICACY WAS A MYTH. The reasons for "off-times" at this point are not unknown - it is the protein interference factor. If my "experts" were wrong about this could they be wrong about DBS being the solution.
I flew out to the Mayo Clinic, to consult with the guy who "wrote the book".
I decided against DBS, reduced my meds to just Senimet (thereby eliminating a host of side effects), and worked on controlling my diet so that I can minimize and/or eliminate protein intereference and thereby repeatably eliminate "off-time" during the day.
Symptom-free days do feel great and are possible for many of us with PD. The solution is simple - Senimet and a controlled diet - but not easy ( dosing must be calibrate to each patient, timing is crucial, diet must be controlled) . Unfortunately, no money in simple for drug companies (and researchers), timing and calibration of dosing is cumbersome and proper control of diet takes education and work- so not amenable to 10-minute "drive-by" doctor visits.
I CAN MOST CERTAINLY UNDERSTAND WERE YOU ARE COMING FROM.
WITH THE RISK OF UPSETTING PEOPLE I HAVE TO SAY THAT THE THING THAT STANDS OUT IN THIS SUPPORT GROUP IS THE LACK OF TRUST IN THE TREATING SPECIALISTS.
I TRUSTED MY NEUROLOGIST AND NEUROSURGEON COMPLETELY.
RE MEDS,,, HAVING DBS ENABLES MEDS TO BE INCREASED TO TREAT THE OTHER SYMPTOMS WHILST CONTROLING THE DYSKINESIA.
ADOPT AND MAINTAIN A WINNING POSITION.
I HAD DBS SIX YEAR AGO, THESE LAST SIX YEAR HAVE BEEN THE BEST YEARS OF MY LIFE.
DBS IS NOT A MAGIC FIX,I STILL HAD TO WORK HARD ON MYSELF AFTER DBS.
YOU ONLY GET OUT WHAT YOU PUT IN, IN MY CASE IT IS TOTAL COMMITMENT.
DBS HAS ENABLED ME TO WORK HARD AGAINST PARKINSONS, IT IS AFTER DBS WHEN THE HARD WORK BEGINS. IF YOU JUST SIT AROUND AND DO NOTHING AFTER HAVING DBS, THEN THAT IS JUST WHAT YOU WILL GET- NOTHING.