It turns out that the decision to donate my brain for research has produced some interesting and positive side effects. While completing the extensive donation application, I reached a section asking for information about my treating physicians. After listing information on my family doctor, who I see every 3 months, I was about to identify my neurologist when it occurred to me that I hadn’t seen him since 2008 and perhaps it was time for a follow-up visit. It came as quite a surprise to learn that he is no longer practicing and in fact has left the area. Time to search for a new neurologist.
Now that I know a lot more about MSA than I did in 2008, my search centered on neurologists who specialize in diseases of the autonomic nervous system. Fortunately, I found a local doctor whose practice is limited to Parkinson’s disease and other movement disorders. My first office visit was certainly thorough; over two hours of interview, tests, and treatment suggestions. For the first time in this entire ordeal, I found a doctor who went beyond the usual “we’ll treat the symptoms of MSA as they arise” to “let’s do something to slow the progress of this miserable disease.”
First, he arranged for a speech therapist to evaluate me and develop a plan of action to strengthen my voice and articulation but more importantly to prevent entry of food or drink into my lungs which is common for MSA patients causing aspiration pneumonia. That evaluation included a swallowing exam which used a fluoroscope to watch how I swallowed certain types of food and beverage. Starting December 1, I will see the voice therapist twice a week for 6 weeks.
Second, I am awaiting a visit from an occupational therapist who will inspect my home and suggest ways I can install or improve safety features for everyday living.
And finally, the doctor prescribed a new medication, Florinef, which should help control those 30 point drops in blood pressure and the dizziness I feel when standing up.
Needless to say, I am very pleased with this new treatment focus. I really believe that between the positive approach of this new neurologist and care and concern of my family physician – I have a team that will help me combat the debilitating effects of this “miserable disease.”