[soccermom54]

Hi Everyone. I am showing some early symptoms of Parkinson's and needed some advice. I just found this forum. I started having a sleep disturbance a few months ago (kicking and yelling at night) and just started having an occasional tremor in my right thumb. I just read that these are early symptoms. My grandmother had PK with tremors and my father had mild PK with a stooped over walking position. We did not know it was PK for quite a while.

I live in Northern Virginia and was looking for advice on a good doctor to start with and also any advice on alternative therapies or specialists to see. I just started CO Q10 and am stepping up exercising to see if that helps. Any advice would be appreciated.

Thanks!!

[made it up]

Hi Soccermom,
I can't help with names of who to consult with however your first step would be seeing a movement disorder specialist.
They're a sub speciality in the world of Neurology that treat P.D. a lot more than a general neurologist would and you'd be likely to get some answers sooner rather than later.
Perhaps make contact with your nearest Parkinson support group on who to see?
Best wishes.

[soccermom54]

Originally Posted by made it up

Hi Soccermom,
I can't help with names of who to consult with however your first step would be seeing a movement disorder specialist.
They're a sub speciality in the world of Neurology that treat P.D. a lot more than a general neurologist would and you'd be likely to get some answers sooner rather than later.
Perhaps make contact with your nearest Parkinson support group on who to see?
Best wishes.

Thanks for the advice. I just tried to make an appointment with Georgetown and could be seen until March. A more local doctor is available sooner. I am trying to find an alternative/holistic doctor too and am searching for clinical trials.

[dan1000]

I agree with everything Soccermum said, and add the following:

When you see your MDS, recognize that although she knows far more about PD than you, you will always know more about your own body than her. As a result, I believe it makes most sense to consider your MDS as a provider of advice, from which you yourself will ultimately make decisions (about medications, diet, exercise, and so on). I think it works better that way than treating the MDS as a kind of "answer oracle" who tells you what to do.

Bottom line: The MDS can help you figure out how to treat your disease. If you simply "let her treat it for you", it won't work nearly as well, because she doesn't have access to knowledge about your body in nearly as much detail as you.

Dan

[Tupelo3]

Originally Posted by soccermom54

Thanks for the advice. I just tried to make an appointment with Georgetown and could be seen until March. A more local doctor is available sooner. I am trying to find an alternative/holistic doctor too and am searching for clinical trials.

soccermom, I have pasted below two links. This first is for a Movement Disorder Specialist Finder based on your location. Just put in zip code. For example, I put in the zip for Alexandria, Va. and a list of 30 - 40 MDS doctors show up with-in a reasonable radius. I would HIGHLY recommend that you begin with a MDS rather than a general neurologist, and certainly not with someone specializing in alternative medicine. It's not that there may not be a time and place for alternative/holistic care, but you haven't even being diagnosed with PD yet and they aren't capable of doing that. From your description, and family, history, it sounds like PD is a good possibility, but there are other diseases that are similar in the early stages. Your first priority now is to determine exactly what your are dealing with. Alternative care specialists are not trained in diagnostics. If, down the road, you wanted to try to add on alternative treatments, like many do, then i can understand that. In addition, given your family history, its highly recommended that you get genetically tested to see if you have any of the mutations. It is very likely we will see treatment differentiation in the future based on certain genotypes. You will only get this type of information from an MDS.

Regarding involvement in clinical trials, thats a wonderful idea! I've pasted a link for the MJFF Fox Trial Finder. It's pretty much self explanatory to set up. You will be able to sort through all of the 500 or so ongoing, and new, clinical trials in PD. They can be sorted by drug or observational. The drug trials can be sorted in multiple ways (e.g. symptomatic treatments, or disease modifying/interventional treatments).

Finally, Dan's suggestion about how to interact with your MDS is great advice for everyone. Furthermore, you should not be afraid to interview several doctors. If you have PD, it's a long term journey. You want to be treated by someone knowledgeable who you trust, feel comfortable in speaking with, and shows you proper respect. There are many MDS out there like that, but, unfortunately not all of them are.

Good luck,

Gary

FOX TRIAL FINDER : Parkinson's Disease Clinical Trials
Find a Movement Disorder Specialist | Partners in Parkinson’s

P.S. If you have a chance of getting into NYC next Saturday, there is a free event called Partner's in Parkinsons. It is probably the best place I could recommend for getting the type of information you are searching for. There are several discussions on how to find a MDS, what will happen at the first visit, and how to partner with your doctor.

Attend an Event | Partners in Parkinson’s

[soccermom54]

Thanks everyone for the advice. I have an appointment with a Movement Specialist in October and will see how things go. It is great to have this forum to ask questions and see what the latest news and information is.

[Nan Cyclist]

The support groups in N VA are terrific. The leaders will bend over backwards to provide all you need. CQ10 has not been shown to be helpful in clinical trials. If you have not started on any medication, you may qualify for the MJFF PPMI study. Along with providing much needed information for clinical trials, they will provide you with the best Movement Disorder Specialists in the country, for free. I am seen by doctors in Seattle, Portland, Baltimore and DC. In this way we all help each other. All the best.