Be your own doctor
I have found that my condition - Vascular Parkinsonism, self-diagnosed seven years ago - is something about which virtually every medical professional I have encountered knows nothing about, and, with one notable exception, isn't interested in. My experience began with falls - over a dozen, and always landing on the back of my head.
Several doctors and two hospitalizations taught me only that the medication proposed - carbidopa/levodopa - was of no use, and that, unless I figured out what was wrong and what an effective treatment was, I was on my own. In researching and discussion, I learned that Physical Therapy was recommended, and, after trying a couple of others, found a therapist who knew, understood, and cared. She is a DPT with the NCS certification. I'm going to lose her in a year, when she enters Medical School to become a Neurologist, so that she can do more about the beginning of Parkinsonism, rather than just treating its symptoms. We have developed an exercise program which works for me. Not rocket science, but tailored to my requirements, and done in a clinic filled with caring, friendly people. I have learned that my team of caregivers: my therapist, my wife and my therapy puppy in training, can be trusted, will listen, and do all they can to help. No one among family, friends or other medical types (including several PCPs) - has offered anything positive, but strangers will hold open a door for me and my walker or help me when I get stuck in a restaurant chair -
I am blessed that these angels appear when I need them. The lesson I have learned, and would recommend, is use the web, often and repeatedly, and research what's going on with you. Keep digging, write stuff down, share it with those whose help you need, and make every day a learning experience as to how to make your life better. I have an interest which keeps me going, and it helps make my days both pleasant and productive, and my Parkinsonism isn't allowed to
male my life anything other than what I want it to be. If I can, you can.
- Thanks for sharing more about your journey. It can certainly be frustrating to not get answers from medical professionals, but I'm glad you've found strength in your current care team. In case you were interested in reading this, we do have an article that talks about vascular Parkinsonism here: https://parkinsonsdisease.net/answers/vascular-parkinsonism. Thanks again for sharing. Take care. - Chris, ParkinsonsDisease.net Team Chris -
Thanks for your email. I carry the description of Vascular Parkinsonism (reduced to a wallet-sized card) with me wherever I go, and share it, often. I give it to people to read, but they don't - I'm seriously thinking of changing my PCP because he (no more that 35 years old) - can't remember my issues from one quarterly visit to the next.
My Physical Therapist is my saving grace, although, when she starts medical school in a year, I'm back to square one.
Thanks for the note, and I read each newsletter thoroughly; thanks for it, too.
Paul Bloch
Thank you Pavleaux, for your comment on Vascular Parkinsonism and educating the experts on Vascular Parkinsonism.
Your PCP SHOULD remember your issues from one visit to another! All medical professionals write S.O.A.P. notes after each visit. Included in these notes, they comment on Subjective [what you say to them, Objective, [what are the results of any testing], Assessment [assessment of prior discussions and treatment outcomes] and Plan of Treatment [ what are the changes or additions are planned for treatment.] They scan these SOAP notes prior to your next visit so that they can recall the last visit.
These notes are submitted to your insurance company, when requested, to justify the treatment rendered and payment. Medical specialists communicate using them when communicating with other healthcare professionals in a concise manner.
After each visit, you may ask the staff to give you a copy of what discussed with the medical professional today. If your physician doesn't use SOAP notes or other means of documentation, in order to keep their progress information up to date,
