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If You Have Not Had DBS Surgery, Tell Me Why.

A MyParkinsonsTeam Member asked a question 💭
Mesa, AZ

Just return from my neurologist. She says that because of the severity of my symptoms she believes the only relief that I am going to get is by DBS. Doctor says that I am substantially impaired and unable to do a lot of the things that I need to do. I have not responded real well to leviopa. And because both of my Parkinson's and essential tremors are severe I am thinking to seriously about it.

Parkinson's is progressing very rapidly.

🦉

October 23
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A MyParkinsonsTeam Member

I personally have been leary of neurologists, who have not went on to get the two years of training necessary to be called a movement disorder neurologist. Although my research was not extensive, it seemed to be consistent that neurologists for the most part get a variety of areas of training of which Parkinson’s is only a small part. The literature did say there are a small percent of neurologist that do a lot of work in the area Parkinson’s, but I’m not sure how you’re gonna find one. Again, this is only my opinion based on the review a small amount of literature and realize I also have an aversion to have someone drill a hole in my head.

October 30
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member - Good for you for standing up for yourself, and good for the doctor for acknowledging that he had been a jerk. That's rare.

November 15
A MyParkinsonsTeam Member

The geriatric in countries like the U.K. and U.S. live "lonely lives separated from their children and lifelong friends." As their health deteriorates, the elderly in these cultures often move to retirement communities, assisted living facilities, and nursing homes. In other words if you’re not productive or can’t take care of yourself when you’re elderly, you get warehoused. 😡🥲

November 4
A MyParkinsonsTeam Member

Hello David, that is wonderful news about the reccomend....DBS surgery.
It seemed at the time the only person who was for me getting the 2 part surgery was my wife. Oh and my neurologist.
I was very nervous and afraid, however my neurologist said my parkinson's was advancing so much so my wife had to help dress me. I hav a brother who is a few years older than myself, he developed PK he was 3 years advanced, just prioryears i tried to get him to opt for the surgery, however everyone started getting into his head about how dangerous the surgeries are.
i saw him last month and he was bedridden and did not recognize me or his other brother.
also when you meet with the DRs they to will downplay the results. however i pressed on with my family friends, my wife daughters and God.
What ever you do please do what you think is right. Consult the mighty Physician as well.
Best And God Bless,
john

November 4
A MyParkinsonsTeam Member

WOW, I tapped into the right group this evening. A PA in a neurological facility diagnosed me about 6 months ago and immediately put me on the Dopa twins. I have had lots of side effects, but the trembling has not stopped. Discussion of "alternative" treatments was discouraged until last week when I finally was allowed to see the guy with all the designations. He also didn't want to discuss any other forms of treatment and said I had a mild form of PD and I would be taking 2 pills 3 x a day for the next 6 years (when I will be almost 90). I have located another neurologist in the area who appeals to me more. I'm trying to get an appointment ASAP. I'll keep the Group posted.

November 2

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