I assume most people with Parkinsons have a Primary Care Physician (PCP) and a Neurologist. As the disease progresses, and particularly at the last phase of the disease, who's in the driver's seat as far as medical care is concerned? I assume neurologists make diagnoses and are more familiar with medication options. Is there an expectation of roles assumed from the professional side, and how would those roles be described?
Also I hear repeatedly that its important that your Neurologist have certification as an MDS (Movement Disorder Specialist). If its so important (and Parkinsons is the second most popular neurological problem) I find it surprising that EVERY neurologist doesn't have this certification. What special skill / knowledge set do those with an MDS possess? Is it simply diagnostic ? Is it that they are more specialized in Parkinsons... ie have a higher percentage of patients who have PD? Would be better at symptom control with drugs? Are more connected with Clinical Trials? What exactly are the benefits in having an your neurologist have this designation?
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The answer is yes to your questions. They are usually younger and see only pts with movement disorders... no backpain, injuries, peds etc. and have completed a 1-2 year fellowship. I have seen older neurologists that are just as good having developed a practice that is limited to movement disorders. I would rather see an older neuro that has the competency and listening skills than a newer MDS that hasn't developed the same abilities but has the credentials.
Your Primary oversees all your care with input from your specialists. It is very important that your neuro and all other specialists you see send your Primary a consult note with any meds they have prescribed, a general overview of your condition, his/her treatment plan and prognosis. Not all MDS are younger docs but they are better versed in current treatment modalities and diagnostics. My husband's PD improved after switching to a MDS from a general neuro. He was also more informed regarding support groups and intervened whenever necessary, unlike the general neuro with whom we had to wait weeks to get an appointment when there was an issue we needed to be addressed.
In response to etterus who thinks younger doctors don't have the listening skills of older practitioners, I must beg to differ. I know many older, very experienced doctors who do not listen to the patient or his family and tell you what they want you to do regardless if it is correct in your circumstance or not
I hope you find the correct team for you and your needs.
I am not critical of younger docs. I was just using that as a comparison of some younger movement disorder docs vs older neruos that have specialized without the fellowship credentials.
How long is a piece of string? Is Parkinson's primarily a movement disorder?
My main concerns are not the physical symptoms, ghastly though they are, but the insidious, invisible emotional, cognitive & psychological/psychiatric issues. So should my consultant be..........?
Actually he is a gerontologist who has a special interest in PD. I have found him to be knowledgeable re current theory & practise especially in research & trials: he has helped me to participate in 4 trials. He puts his patients at the centre of their treatment, involves spouses/partners/carers & best of all - he listens. He gives us time & makes sure that we all understand what has been decided at each meeting.
Perhaps the qualities we prioritise in our consultants differ according to our individual needs & preferences - and PD is as unique as each patient.
I read these comments with some confusion and hope some of you can help me. I was diagnosed with Parkinson's a year ago. For about 5 years I had symptoms that were evidently part of the disease but my primary care doctor, nor my gastro doctor suggested Parkinsons. My neurologist who saw me after a mild stroke said I did not have Parkinsons but essential tremors.
A year ago I had 4 fall in 3 months, the last one resulting in a subarachnoid hematoma and loss of balance. The neurosurgeon referred me to a neurologist in the new town I had moved to. He diagnosed Parkinsons immediately. The new gastro doctor agreed. I have moderate right side tremors, problems sleeping, choking almost weekly, and adhesive bowel disease that requires strict gluten free, lactose free diet. I have also seen a neuro/opthamologist. None of these doctors think I need a mobility specialist although everybody in my support group goes to Charleston or Duke to see one there.
My neurologist says my symptoms will get worse but it's been a year and there is no difference. I am 70. WILL these symptoms just suddenly progress?? What has been your experiences??
Well that neurologist who saw you after the stroke gets a thumbs down. Never heard of adhesive bowel disease, but everyone with PD has bowel problems, goes with the territory.
As to your question about progression there is no definitive answer but if your PD is slow progression now it may well remain so. It is not usual for PD to suddenly progress. Enjoy this time because things are likely to get a bit more difficult as the years pass.
Only you can be your own best advocate! Look up mobility docs at Duke or wherever and research them and GO.You know in your heart you have issues so get the help you need.I hae to be my hubbys advocated as he is in denial and too busy looking after his imaginary friends.
Thanks for your replies. I do try to stay active, had a good round of PD specific therapy so my balance is so much better. This low FODMAP diet has helped tremendously because I have severe constipation and tests show my bowels are covered with adhesions from abdominal surgeries and of course PD stiffens the lining of the colon.
We are thinking of leaving the Neurologist my husband and I have been using.He specializes in Epilepsy (which I have) and said he did in PD but although he seemed to get his meds straightened out he has declined and is seeing the Parkinsons Movement Clinic at University of Maryland next month.My confidence was shaken in the doctor when I asked him if he thought that Rytary could be used for my husband as it could smooth out the off periods and he looked at me like I had two heads and did not have a clue as to what it was and questioned that I did.
I also asked him if he thought our son should be tested as everyone seems to concur that there is a genetic component . Again the look at me as though I was insane.
I'd say that was a VERY good call. If a physician is not staying current with basic developments in treatment for PD then he has no business treating your husband. Drop kick this physician right out the door. Did you tell him why you left? You should! This is basic malpractice. Physicians need to stay absolutely up to date on these things or they should not be practicing medicine. Perhaps you could give us his name so others can steer clear.
Well they say that you do not die from PD
Your General Practitioner MD is going to treat what you do end up kicking the can with. My GP has referred me to eye doctors , surgeons, exercise programs, neurologists and much more. The Movement Disorder Specialist sends my GP a report after every meeting and if my GP does not like what he sees there he calls me in.
A movement disorder specialist receives two extra years of training specializing in Parkinson’s. If you are not currently going to one I highly recommend you start immediately. They are so much more knowledgeable than a regular neurologist. They understand the progression and med combos much better too, they would also be up to date with New treatments.
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