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On 9 Jul 2001, at 14:24, joan carol urquhart wrote: > Can anyone please advise > what to expect for a first time visit to a movement disorder specialist? > What info should we bring? what questions can we expect? We will be > visiting an MDS in Toronto on Wednesday of this week and we want to make > the most of it. Any advice is appreciated. > > Joan > cg for mother Helen 80/ diagnosed in 91 > Hi Joan and Helen, Joan, below are portions of "posts" I sent to this list some time ago in response to a newly diagnosed PWP going to see the movement disorder specialist for a first visit... I've edited it to bring it up to date. I would like to offer the following to you and your mother..... (since your mom is not newly diagnosed this may be ho-hum...) (Now, I know you're in Canada, 'n some of this is 'merican but that's ok) I was not pleased with my first neurologist and tried others until I was satisfied. I wondered how I would cope and one very understanding dr. advised me that in fact I had already been coping with all my symptoms for more than a few years. This single conversation gave me a different perspective and started me managing my Parkinson's myself instead of looking for others to provide all the answers. Parkinson's sneaks in slowly and even though you receive a diagnosis and suddenly "have Parkinson's" it is just a name to apply to all your symptoms. Nothing has really changed. Sure your Parkinson's will eventually progress and of course you will have changes and adaptations to make but it's not like a heart attack or stroke where immediate intervention and changes are essential to life itself. This means you do have some time to consider and manage these changes. I work in one of the building trades. I am an elevator / escalator mechanic. It took a few months for me to decide to tell people or not tell people. Then I started with all of my family, the union, my employer, friends, neighbors, and so on. Everyone was supportive. I still work and I'm relieved that I am not hiding. It is very important to find out everything you can about Parkinson's because you will soon discover we are each unique individuals and since you will only be seeing your neurologist once in a while you will need to become the expert on your own case. This expertise will allow you to manage your PD. and make the vital decisions facing you with a level of confidence. Information is liberating! Application of information is power! I didn't think I needed a support group but was talked into going to the Early Onset Group locally to see what it was like. I soon realized what a nice bunch of people most Parkinsonians are. They all had something to offer and I realized I did too. I learned from their experiences; from education meetings; from volunteering for clinical studies in the Movement Disorder Clinic; from books; the Internet; and now from this fabulous "List". My best advice is that keeping busy and keeping a positive attitude is better than all the drugs known to mankind. Yes, you will need some drugs too.....but be informed enough to decide yourself (in consultation with your professional medical practitioner of course) when to start a regimen of drugs. Be informed and alert to any drug related positives and negatives and/or side effects so you will be able to consult and have a role in adjusting medication to suit you! Be prepared whenever you meet with your dr. Make a list of your feelings and your questions and participate actively. Don't leave until you are satisfied you understand and agree with your treatment. You will probably find it very beneficial to change your lifestyle to include routine stretching and exercise. I recommend people with Parkinson's attend a Movement Disorder Center and see a Movement Disorder Specialist... I was misdiagnosed about 3 - 4 years after first symptoms and thought I was early stages of MS but that was later ruled out and I went several more years until symptoms progressed to the point my wife and a dance instructor decided I had Parkinson's. I went to a neurologist and he took months to confirm. Then I switched neuros and went to a Parkinson Specialist at a Movement Disorder Centre and he confirmed Parkinson's in minutes. One of the best in Toronto is Dr. Anthony E. Lang. He is internationally-respected both for his clinical care of patients as well as his research. He can be reached at: Toronto Western Hospital Division of Neurology 399 Bathurst Street Eleventh Floor Toronto, Ontario M5T 2S8 (416) 603-6422 A Parkinson's Specialist = MDS = Movement Disorder Specialist... Say What???? Who are these people, what do they do, and where do you find them???? A MOVEMENT DISORDER SPECIALIST ... essentially this is a Neurologist who specializes in one or more movement disorders... and in our case... Parkinson's! They may have private practices but, in larger centres, are often associated with MOVEMENT DISORDER CENTERS... Here is *text* I yanked offa the WWWeb... re: Movement Disorder Centers... The Clinic's mission is to offer optimal treatment to those suffering from movement disorders, with the help of a multidisciplinary team composed of a neurologist, two nurses and a neuropsychologist. Movement disorders encountered at the Clinic include Parkinson's disease, etc. Close collaboration with other health professionals such as a neurosurgeon, a brain imaging specialist and a psychiatrist has made possible a more effective multidisciplinary approach. We also work with occupational and physiotherapists, social workers, psychologists, urologists, dieticians, exercise and support groups, and the private and public CLSCs) home care sectors. These services may be available to clients upon referral by the neurologist. http://www.mcgill.ca/mcsa/clinic_dis.htm John Hopkins The Movement Disorder Group within the Department of Neurology at Johns Hopkins provides diagnosis, treatment and management of individuals with movement disorders including Parkinson's Disease, Essential Tremor, Dystonia, Ataxia, Multiple System Atrophy, Progressive Supranuclear Palsy and other rare movement disorders. http://www.neuro.jhmi.edu/MvtDis/home.html Parkinson and Movement Disorder Center at Shands Jacksonville http://shands.org/jax/parkinson_overview.htm I was unaware that there were Movement Disorder Centers and Movement Disorder Specialists until Parkinson's came to my house... I live in Vancouver, BC Canada but no matter... This list is a fabulous resource and we're here to support each other. Now... Where do YOU find a Movement Disorder Centre? Check with Parkinson's Society Canada http://www.parkinson.ca/ Information & Referral Centers & Services Locations http://www.apdaparkinson.com/ictr3.htm The APDA and SmithKline Beecham have established SB CareLink, a toll-free hotline that connects you to the closest Information and Referral Center to you. Call 888-400-2732. Choosing a doctor? Make an Informed choice... (AMA) In addition to putting out a list of "Top Doctors," the Center for Study of Services is advising patients to take the following steps when choosing their physicians: Select a primary care doctor to coordinate your care. Give preference to board-certified doctors. Check on doctors' credentials through the Web sites of the AMA or the American Board of Medical Specialties. Try to choose a doctor who has teaching responsibilities at a hospital. Choose a doctor who has admitting privileges at high-quality hospitals. Consider selecting a doctor who practices in a group. Ask about a doctor's policies on giving advice by telephone. http://www.ama-assn.org/sci-pubs/amnews/pick_99/prfa1115.htm And here's what to expect from your movement disorder specialist. Basic Clinical Skills - The Neurologic Examination http://www.medinfo.ufl.edu/year1/bcs/clist/neuro.html The Complete Neurological Examination http://www.medinfo.ufl.edu/year2/neuro/neuroexam/neuroexm.html How to be a Power Patient at Next Doctor Visit http://www.seniorworld.com/articles/a19990719090701.html Key Questions Checklist http://www.peiapathways.com/lvminter/selfcare/keyquest.htm Questions to Ask About Medications http://www.peiapathways.com/lvminter/selfcare/question.htm I hope this is of some assistance. If you need to ask.... anything goes on this List and someone of us will surely respond. I wish the best for you Joan and you too Helen .......... 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