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Mike Tanzi

Primary care vs Specialist

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I was diagnosed with early Parkinson's over a year ago, at that time I was diagnosed by a Movement disorder specialist. The state I lived in had numerous specialist that specialized in Parkinson's. I have not started any medications as of yet, but I have noticed that my tremors are getting worse. My problem is the town that I moved to in New Hampshire does not have any neurologist or any specialist within a 80 mile radius. I have established a Primary care at my new location. I have seen my primary one time sense I moved here for a new patient physical. I talked to him about finding a specialist being new to the area. He told me he could treat it or he could recommend a specialist. He also told me that the closest was across State line in Portland Maine. I checked it all out he is correct there are no specialist in my or any town close to me and the closest is 80 miles away. My question here is, do primary care doctors really have the knowledge to treat Parkinson's? I know it probably comes down to that particular doctor's knowledge. But do many patients choose there primary care to treat them?

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Allison Willis has published a paper that looked at thousands of medicare users and it turns out that have a neurologist does make a difference to best treatment of PD. We usually suggest finding a neurologist and if possible one with movement disorders training or expertise-- and seeing he/she once or twice a year and having them interface with your primary doc.

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How does one go about finding a qualified doctor. I also have moved and my doctor who is a specialist in Parkinson's is now about 80 miles away. I find it very hard to travel that far since I am alone and have no one to help with driving. I have tried searches online many times but can barely manage to find a neurologist listed let alone one who treats PD. Most list Epilepsy and MS.

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Doing your research; calling local neurologists; asking what percentage of a neurological practice is PD or movement disorders will give you an idea by volume of the experience; ask local support groups; call NPF helpline 1800 number.

 

Hope that helps.

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In my mom's case it didn't make much difference. She's getting her refills from her family doctor. When I thought of going to a new neuro after ditching the old one I told him about it and his response was " There are only so many drugs out there for PD and your mom has tried them all apparently so unless he knows something you and I don't then go for it"

 

Everything is trial and error. No doctor can tell a patient if one drug will work or not unless it's tried out. Everyone is different as well so a doctor can't tell someone based on experince with others that this happens because of this and etc so.... this is why I think her family doctor knows as much as any specialists for now. I would love to eat my words some day and find someone super special that will be a miracle worker for my mom. Fingers crossed.

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I would like to disagree (very respectfully). You should always look for a neurologist and also if possible a movement disorders neurologist to co-manage and to change medication cocktails, dosages and timing. There are many complex changes in PD that make a big difference. Also using PT, OT, Speech and neuropsychology/psychiatry can be critical. I have seen a ton of patients mismanaged (not intentionally) by family and general docs. It is an important partnership. I have many simple tricks you can get out of our new book Parkinson's Treatment:10 Secrets to a Happier Life, but this won't replace a specialist.

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Like I said until I find one that can make me eat my words I highly doubt it. Tweaking the medicine to be taken at selective times may work for people that are watched at home at all times or have 1 on 1 care but in my mom's case it will not. She falls asleep after her medication is taken so that would not work when she's at the daycare center with one worker catering to 10 people at a time. She would be on the floor for hours until someone notices or trips over her. Just kidding.

 

Specialists like neuros and movement disorder specialists are focused primarily on the brain yes I know. They may be able to understand more than primary doctors but I'm searching for what will make my mom better and not so much why it's happening.

 

It seems the problems for most people like us is that there is not one nearby so that is another obstacle to better treatment and they usually cost more too.

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I bet your mom could be helped more than you think. Call the 1800 Helpline that is free on the main NPF website www.parkinson.org and get some information on people close to you. It may also be worth your time once or twice a year to drive her for a tune up. Good luck.

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