Diagnosis Advice

Ask for copies of all your doctor's notes from your exams. It's the way to discover what your Dr. is thinking in regard to your symptoms and I also found out what tests she plans to have done under certain circumstances! Lots of things time just did not permit a full discussion of during my diagnosis appointment. We can get jolted pretty hard when we hear those words,"I think you have the symptoms of Parkinson's." You might even forget a lot of important stuff you are told to do, how to take meds, etc. But guess what? It's all written down in the doctor's "Summary of Visit" notes in your file. All you have to do is ask for it. You might still be confused about terminology, etc., but you will have something to refer to and you can look it up! The internet has a lot of information - so much that you might be intimidated and not even know what pertains to you personally. Those doctor's notes are gold, in that the conditions, tests, and plans are written down for you and we all know Mr. Google is our friend. If you still have questions at the time of your next visit, take your own file along and ask about those things. Knowledge is power and you will gain confidence from knowing the facts.

COPIES of all your doctor's notes, of course.

Good advice. For me because i was diagnosed and my treatment is with the V.A., they have web site that has all my doctors notes. My neurologist was very open about all the tests and why I was diagnosed with PD. I can also send them messages on that web site and they reply quickly.

I would recommend that you do not wait but immediately get into a PD support group. That will help you to realize that you are not alone, there are people with the same disease that are getting along quite nicely and who can empathize with you. They will be a source of information and, in some cases a source of inspiration. And they are frighteningly normal.

PD meds (often offered as part of the diagnostic process). . . will work and will reduce symptoms. For many, your symptoms will significantly diminish or disappear. Don't hesitate to take them. They'll make you feel whole again. Unfortunately if the diagnosis was pancreatic cancer the meds would be pain killers . . .

Recognize that this a long term and gradually evolving disease and that with medication, exercise and some effort you're going to be around for a long time. If you're early onset, we're talking 20-30 years. If you're an oldster (65+) you're probably looking at 10, but how long did you expect to be around anyway? You can ask your neurologist "How will I die" and she'll probably say what mine did when I asked her . . . "Oh, you'll probably die of Cancer, a Heart Attack or maybe a Stroke... like most people. " Cheery thought.

Alas, a PD diagnosis does not give you a pass, you do not, necessarily pass GO and collect $200. Same goes for aging. S__ happens. The rest of your life you can pin all your 'aging' symptoms on your PD. Or maybe leave a lot of it where it belongs. Mileage happens.

I think for many people, the worst part of being diagnosed with PD impacts you psychologically - you are likely to be depressed or experience apathy towards life. You can spoil or significantly diminish the best years of your life with negative thoughts. You need to try to nip this in the bud... fast. Get professional help, spend time with seasoned PDers. If being depressed persists, take antidepressants.

I'll say it one more time. Find people who have PD and talk with them. If you're experience is like mine was, they'll have more credibility than anyone else.