Today I had some extra time to read more postings on this site than I usually do. The overall thread is the medical problems other than PD that we are dealing with and how some of you have great support from your primary care physician and some don't. It seems that the most common non-PD symptoms are gastro-intestinal (or I should say, not immediately tied to PD). My primary care doctor and my dermatologist are both "PD-aware" and are helpful. My movement disorder specialist seems… read more
My primary care MD, an internist, is the head of my team. Next comes my psychiatrist, as I am bi-polar depressive, followed by my neurologist. All three are in the same medical system but different office complexes. For any med/treatment change they contact each other through primary MD. These docs are followed by Rheumatologist, Dermatologist, PT, OT, speech therapist, swallowing specialist and nutritionist. That's my team. I feel that I am the team director as I know how I feel and they are my expert team members. I interviewed each before I took them as my doctors and all agreed to this. I've been a RN for 50 years and know what I want. 3 MDs refused and I was pleased they did. I wanted people I could depend on.
Great Question - @A MyParkinsonsTeam Member, and couldn't agree more with your conclusion..
I too, have been truly blessed with my PCP, Dave Dulle MD for more then 16 years now. Their office is only a 1/4th of a mile away from where I live. He knows all about me and has always been willing to listen to my issues, and acts more like a good friend that is truly concerned about my health. I can get an appointment almost immediately, and found me 2 stellar Specialist for my TSR, Knee replacement, and Neurologist - Movement Disorder Specialist with all share my medical files through University Hospital network....
It's incredible how everything works together, and our health insurance recently added a patient web portal, which gives me instant access to all of my medical info from all of my Specialists. Dave has always made me feel like I was the guiding force in my own health care, and I trust his judgement implicitly. He is an awesome resource like this week where he fine tuned my BP meds, due to the 30% increase in PD meds early this year - that had given me headaches.
Also it gave me opportunity to ask him if any of his patients had gotten Stem Cell therapy vs Knee Replacement issues, and said several have, but has not seen them yet - and looking forward to his patient comments / results in this coming year.
That being said, I am also blessed to have the neurologist I do. From the beginning, he has been more than willing to listen to my concerns and answer my questions. He is also willing to discuss my thoughts and suggestions with regard to any prescribed treatment plan - my choice was aggressive treatment for best Quality of Life, and use the Gold Standard for PD treatment with proven and low cost PD meds.... Sinemet 25/100mg & Comtan 200mg is generic form.
They have worked very well for me for my PD treatment... and use my PCP to monitor and prescribe meds for Depression (Effexor XL 100mg) and Anxiety (Buspar 15mg x 3), that has kept me on a level keel, so my PD symptoms are much lessoned, that ultimately leads to a much better Quality of Life... Alan
Hi @A MyParkinsonsTeam Member,
My Specialist keeps jerking me back, and haven't fallen yet..... Haha So, fortunately balance is still good, but can be awkward at times getting into shoes while standing. My gait is very strange, and stopped swinging my arms probably 20 years ago... my biggest problem has been my arthritic knee joints that are bone on bone, for over past 10 years.... By taking my supplements, I don't experience any pain... but I tire very rapidly standing or walking, partly to the weird gait I have with worn out joints... Alan
PS... That's why I'm seriously considering Stem Cell Therapy for both knee joints, rather then going for knee replacement, all of its therapy and rehab that I'm truly afraid would be my down fall... even though my medical insurance doesn't cover it, but I can get both knees done in less then 2 hours as out patient.
So glad you asked this question. I have noticed also the lack of protocol which should by now be a "to-do" list that all medical PD specialiists follow. Sad that so many posts are of patients "lost in the sea" When I first had symptoms my primary doctor, a geriatric board physician...sent me to a neurologist.who at first thought it was drug-induced PD...My primary MD had worked 10 years in a Rehab center who felt he could treat me if and when my symptoms were more advanced.he would send me to neurologist. This was 8 years ago.Last 2 years were difficult. I was taking Mirapex. Suddenly I "woke up". I had read many articles on PD..and decided to make an appointment with a movement disorder neurologist who specialized in PD. My primary MD said it was "a good idea" Had to wait 3 months for app't. and was impressed with speed at which he added Sinemet and when told I had side effect of nausea when taken before mirapex., added Tomcan to the sinemet. Told me to come back in 3 months.and call if I had problems. Within 2 weeks I improved greatly. No longer shuffled when walking with walker and better balance. But I intend to keep appointments with primary MD for routine blood work etc. and continue using him as part of my "team". Even though I am 86 years old in good health except for PD..I have "usual" meds forBP, Cholesteral, and thyroid. The quarterback for me is a psychiatrist/pharmocologist who I see once a month...it helps to talk and he monitors my meds keeping me on prozac which I have taken for years. This works for me and I'm glad that I decided to go to neurologist who so far has helped..BUT I think the neurologist should be the quarterback. I work out with trainer twice a week..again my own advocate ....I do consider my primary doctor...who makes house calls !! aware of all my issues and proven over the years to be a good and caring and board certified in geriatrics.
@A MyParkinsonsTeam Member, I guess I am on the other end of the spectrum, I don't have a good communication with my PCP or my movement specialist. I have been going to the same PCP for about 15 years, but a lot of the insurance rules have changed. You can't go to the doctor for more than two things at a time, or you have to make another appointment. He basically leaves my PD issues up to the movement specialist which doesn't WOW me either. They are both from the same medical system so through my patient portal, I can keep up with my chart and even email them when I have a question or need an appointment. I wish they would kind of work together more. My neuro is greatly involved with DBS and I think that is where her focus is.