Don't give up and seeking treatment - Parkinson's Disease Message Board

Bruce · 11-27-2000, 05:25 PM

Just had a thought I would like to share with everyone. I don't claim to know everything about PD, but have spent many hours researching it. What I suspect is their might be a lot of PD people that have assumed their present treatment and condition is as good as it gets. This is not a "pep" talk, but if you aren't doing well their are much more informed neurologists at the Parkinson centers and they have access to drugs that may not be on the market yet. If you are not happy with your condition or treatment be assertive and try to stay informed about PD research, and it is possible your quality of life might be much better then it is now. What have you got to lose?

dbiker2 · 11-27-2000, 11:19 PM

I totally agree Bruce, In July a Parkinson's Care and Research Center opened here in NW Washington and I have switched over to it. My previous neurologist was a very nice lady and she appeared to try to stay current with PD advancements and I have been seeing her for over 10 years. But this new center is very impressive. I have had 3 appointments and my next is on the 14th. They immediately made a major med adjustment and other than a 2 week battle with some severe dyskensia my quality of life has definitely improved. They are also pioneering a new approach to the treatment of PD, at least I think they are, if anyone knows of another center with this approach let me know. They have a staff all in the same center thats works together on movement disorders only and specializing in Parkinson's. They are able to treat all areas the PD may affect. They have of course a neurologist, a psychiatrist, a nutritionist, physical therapist, occupational therapist and a speech therapist. They have a 4-6 hour evaluation, which I will be taking in January, where you are examined by each specialist and then at the end everyone meets together and a specialized treatment plan is developed specifically for you. I a very excited about this and am looking forward to it. Everyone I have met is knowledgeable, personable and caring. A great place.

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Darrell

Bruce · 11-28-2000, 10:33 AM

It looks like you had an experience like mine. My local doctor kept insisting I should reduce the dose of Sinemet and when I told him my symptoms were worse and could barely get out of bed but that didn't seem to concern him.

When I visited Dr.Hubble she listened closely to my responses to her questions. Instead of decreasing the meds, she added Comtan and Amantadine and my on time was increased. If I would have stayed with the local "expert" I would probably be bed ridden in a nursing home and "climbing the walls."

Another experience I had was the local doc recommended I see a neurologist when I visited my sister in South Carolina. At first he thought the only reason I was seeing him was to be able to get refills. Then, after a lengthy discussion and no examination for PD, he looked at me and said "I don't see any symptoms of Parkinson. He told me I would have to go to the medical center and they would "test" me to see if I had PD. At about the end of our conversation, he said "you are between a rock and a hard place." To say I was "steamed" would be an understatement. I didn't have any doubt I wasn't going to see this doctor. This was a time before a had a computer and before I saw Dr. Hubble. and I had a lot to learn about PD. So just going to a neurologist is not necessarily a good thing.

Your program looks good. From what I have learned, dyskinesia isn't always permanent and can be suppressed if you have a PD specialist for a doctor.

I guess you could say you and I are examples of taking that step and seeing a PD specialist has improved our quality of life.

Bruce

LiceN · 11-28-2000, 02:54 PM

Bruce, You and Darrell have summed up exactly, my feeling about the care my husband has had. There never has been a change of meds, except I did ask to try comtan, and they didn't reduce any of the sinemet he took. I take him to B'ham,Al. and there is no Movement Disorder Center there. I am looking into the possibility of one being in Nashville, Tenn. I intend to write Dr. Liberman to see if he can recommend a center close or even several hours drive from our home. Betty D.

Bruce · 11-28-2000, 04:14 PM

Betty D, I am very glad to see you on the new board. I read all of Dr. Lieberman's Q and A and he frequently is very helpful in recommending a PD specialist near where you live. More than onxe he has said if it is something thst you constantly worry about, then make the effort to go to a doctor or PD center that is more likely to help you.

It still amazes me how many doctors are so ignorant in knowing how to treat PD. Dr. L is the best and he is a caring person. You couldn't find a better source then Dr. Lieberman. Good luck