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Topic the right doctor? Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2009.08.26 07:45
Recently Jim's neuro decided he was walking different and perhaps had something else wrong than Parkinsons. He wanted an MRI, EEG and a sleep study done. The MRI and EEG came out normal and the doc decided not to go any farther. That's not the issue in my post, just a background. My main question is this...
With all the experience ya'll have with doctors, and i've read alot of posts, i see that some neuros are not as PD friendly as others. That you need a PD specialist. How do you find one that is PD friendly? We live in rural South Carolina and, as of right now we drive 2 hours to the nearest good neuro..... am i going to have to just call and ask if they are, do i ask my doc if he can refer me to one? I don't want to offend him but we have given him more info than i think he knows... About 3 months ago we lead him to finally come to the realization about dopamine and PD and 8 months ago he was still on Restless LIMB ..... There are only 2 -4 neurologists in each big city in this state. I went through a search before finding this one.Plus several visits to ones who i chalk up as quacks. One even told him he was depressed and needed a colonoscopy, there was nothing else wrong with him. If he hadn't given us our money back, I think i'd have to sue him ... :)
Anyone on this board live in South Carolina that might help me out. I don't think this doc is on track and his nurse, has me ready to smack her off the head. I have left 3 messages in the last week and she hasn't returned the call. It is about the follow up and whether or not anything else needs done etc......
I got in touch with Emory in Atlanta and they mentioned the Movement Disorder Clinic in Charleston. However, when i called they would not give me any info on the phone. They will only talk to doctors or someone that is already a patient.
Since we have no insurance that is a big deal also. Jim is in the category of the uninsurable since he had his TBI years ago, so i find this is a problem also.
I want the right care and dosage of meds for him but am finding it hard to get the right mix. His disability is still working and money is running out fast. Another $400+ first visit would scare me ... Any suggestions??????????

By packerman On 2009.08.26 14:00
we're in Nashville. We changed from a regular neuro to a neuro at the Movement Disorder Clinic at Vanderbilt. it made a world of difference. they helped DH more in a couple of weeks than the other one had done in a couple of years. you might even visit the Charleston clinic to speak with someone directly.

another thought: when you go, ask if they're doing any patient studies.
DH was in one for two years for an experimental new medicine. they did monthly bloodwork and scans at no cost.
good luck!
Pat

By karolinakitty On 2009.08.27 12:33
Thank You for the info ... i'll try going there ......

By lurkingforacure On 2009.08.27 15:23
Vanderbilt has a fabulous reputation for PD and I believe they are one of the Morris K. Udall centers for PD excellence in the US (I think there are only 9 or so of these, so this is a big deal).

Emory as well, great reputation. The good thing about these places is they have research doctors who seem to have a different take on patients than a doctor in private practice. I have heard great things about the care one receives when going to these types of doctors.

From personal experience, my FIL is currently trying to get into a clinical trial for some experimental heart thing which is approved in Europe but not here...he is up at the teaching hospital and I am amazed at how many very experienced doctors from several different disciplines going out of their way to figure out what all is going on with him, way beyond the normal "do you fit within our clinical trial parameters". I think these docs just have a different take on patient care. I have read many places that one of the best things about getting into a PD clinical trial is the superior care you receive while in the trial.

If you can, I would try to get into one of these places...the research neuros are also way up on what all the latest research says about PD. Heck, many of them are conducting the research I am reading about in the news! Can't get any better than that. I hope he gets a new doc and you both can get some relief.

By packerman On 2009.09.03 16:10
just an FYI--
I got this in an e-newsletter today. it's free if you qualify.
Pat

Upcoming Clinical Trials and Research Programs
The following information is provided as a public service. NFCA has no connection to the clinical trials and research programs publicized below and no endorsement is implied.
Parkinsonís Disease Study Under Way
A clinical research study is now enrolling people with mental and behavioral symptoms of Parkinsonís disease. To qualify, participants must: be at least 40 years of age; have been diagnosed with Parkinsonís disease for at least one year; be experiencing behavioral symptoms of Parkinsonís disease; seeing, feeling, or hearing things not really there; and paranoid or distrustful of others. These symptoms must have started after the diagnosis of Parkinson's disease.

All participants will receive at no charge: Health monitoring as it relates to the clinical study; ongoing study-related medical care by dedicated Parkinsonís disease medical staff; study medication or placebo (inactive substance); and the opportunity to talk to a medical research team that understands what you are going through. Transportation to and from clinics may be provided and compensation for time and travel may be provided.

For more information, visit http://www.parkinsonsbodymind.com/ or call 866/565-0262.

By kuttlewis On 2009.09.05 07:41
I live in Columbia, SC, and we've been to Charleston but the doctor there left to work for FDA. Augusta has Dr. Sethi who is a listed PD expert if you care to put up with his high-caste Brahmin ways. In Columbia, only Dr. Dale Hamrick was any good to us even though he's not a neurologist. He had a mother who died of PD and that made him study under Lieberman in Florida. Other neurologists here were worthless. Worst of all is when they give way to stupid shrinks, psychiatrists who only want to peddle their expensive meds. Guess they like the cruises. As far as I know, SC does not have anybody. The nearest good PD clinic is probably at Duke university or Emory.

We did have an appointment at Emory years ago, but the doctor forgot us and came three hours late. Pitiful, eh?

Have you tried the Parkinson Alliance of the Carolinas?

http://www.parkinsonassociation.org/

By karolinakitty On 2009.09.06 05:27
Thanx for all the info everyone.... i asked his doc to refer us to the Movement disorder clinic in Charleston we'll see how that goes.... someone on Jim's patiient site told him of one in greenville but that's a little over 4 hours for us and Emory is about the same if not more.....
Also Jim's only been diagnosed for less than a year and has no hallucinations at this point......
Augusta's closer and we can put up with that stuff easy ....if Jim was as he was 5 years ago he could probably out word Dr Sethi anyway..he may look like a biker/trucker but his intelligence and word vocabulary was up there with the best of them.........

By dkleinert On 2009.09.08 02:04
Just wanted to mention that the Movement Disorder Clinic at Duke University is where we went for my husband's initial diagnosis and for the next 4 years we stayed there with a very indifferent "PD specialist" Dr. Stacey who is the had of the Movements Disorder Clinic at Duke. We were told how "great" Dr. Stacey was and how lucky Duke was to have him on their staff.......the most Dr. STacey ever saw my husband for was 3 minutes, most visits were done by a PA, then Dr. Stacey would breeze in for less than 60 seconds, say how great Joe looked and breeze out. He initially gave my husband his email address. One time Joe was worried and decided to email Dr. Stacey when he was between 6 month appointments because his tremors were increasing and his left side was just them becoming involved also, and he was scared. In the email he asked Dr. Stacey if he thought maybe he should come in sooner for an appt than the 3 more months he had to wait until his next appt, and maybe the medications would need to be changed. Dr. Stacey's reply verbatim: "You need to just reduce the stress in your life and the tremor's will lessen." Can you believe that one????? I was livid when I read that curt, stupid response. We called our family doc, whom we love, and asked him to refer Joe to a Neurologist, and so he sent us to Dr. Josevich in Raleigh. We see her every 2 months (not every 6). She seems to at least care a little more than any of the others. However, I have given her several articles to read, asked her opinion on things I read, etc, and she says she will, but never gets back to me with her opinion when I give her printouts of articles or alternative treatment protocols, etc., so......that is the way it goes. No, Duke is not a good place to go for PD.

By karolinakitty On 2009.09.11 06:52
dk ...from what i was told from the lady at Emory the movement disorder clinic is a training facility also. So i understand your frustration of the big doc only coming in for a minute... you mostly see reidents and it's tough not seeing the same doc .
My biggest thing is trying to get someone who understands PD. I don't think his current neuro knows a whole lot about it..... i don't want to lose this neuro but i'm just trying to get him with someone who knows a little more... if this don't work then i'll try something else......thanx for your input

By dkleinert On 2009.09.12 00:05
karolinakitty : Keep trying, keeping asking for referrals and ask a lot of questions. I do hope you can find someone in South Carolina.....find someone who knows about PD AND cares! Keep us posted.


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