I have Parkinsons. I recently went in for my annual neurological checkup. After reporting in on symptom progression I expressed interest in knowing more about Nilotinib. To my surprise my physician really seemed to know little about it and dismissed the subject with the statement that "there wasn't any buzz about it at her last medical meeting." I guess I came away from my appointment with a number of thoughts:
1. Should not one's neurologist "be current" on medical research and be prepared to answer a question like this ... especially as Parkinsons is one the most prevalent neurological disorders?
2. Are neurologists treating patients with some of the drugs (particularly those which appear to be in later testing (Phase III) that are being shown to be neuroprotective? What is reasonable to expect from your doctor?
I'm not looking to be "tutored" on the current state of research about all drugs that may be effective in treating Parkinsons. I find, as a layperson, Clinical Trial reports to almost undecipherable. I also believe that neurologists are very conservative in treating Parkinsons patients. With all the developments in drugs - many of which are prescribable and some even available OTC . . .
Drugs worthy of consideration in my mind are inosine, israpipine, LDN Low Dose Naltrexone, NAC N-Acetyl Cysteine and Nilotinib.
QUESTION: 1. Do you think I am unreasonable in my expectations?
2.Do you agree or disagree that physicians should prescribe drugs mentioned? (or generally be amenable to prescribing beyond the old standard drugs that only seek to get dopamine into your brain?
Snapped this photo from my patio last night. I live on an Island and don't spend all my time fretting about Parkinsons. Some of the time is being overwhelmed with gratitude for living at this time in this place and being able to still sail my boat. Just wanted to share this