I'm feeling hopeful again. The physical therapy for my arm, neck and shoulders has been very helpful; in fact I "graduated" from PT this week.   Most helpful though, I think, has been Dr. Wasserstein's direction in taking medications.  He has me on a schedule, taking 3 Amantadine capsules a day, and now I feel great!

So here's that promised list of "Do's" and "Dont's" for communicating with doctors and their minions:

DO:
Keep a record of your symptoms so you can tell them when a particular symptom started, what it's intensity was as opposed to now, what you were doing at the time, what makes it better,what makes it worse, etc..

DON'T:
Don't exaggerate or belittle your symptoms.  Your doctor only has what you tell him/her to go by, when it comes right down to it, especially for neurological disorders.  What you tell him is crucial to your care.

DO:
Practice what you are going to say to the doctor before you get there.  I have even done this aloud while getting ready for work.  I find that even if I don't stick to the "script" entirely, it helps to remember issues you wanted to bring up, and it seems, for me anyway, to cut down on the intimidation factor.

DON'T:
Don't be combative.  I don't mean just nod your head and say "yes, doctor" to everything they tell you. What I'm saying is don't go looking for a fight.  If you're angry about something that they are responsible for, try to keep cool and explain your complaint in a rational way, and don't be accusatory.  Most doctors, it seems to me, get defensive very easily (scared of law suits probably) and then they stop listening.

DO:
Remember to thank the doctor and his/her staff for the job they've done (assuming they did a good job!)
I put together a card for my doctor with pictures of me and my friends at the Parkinson's Unity Walk, and thanked him for making this possible.  I think he really appreciated that.

DON'T:
Don't let yourself get rushed into not getting all the answers you need.  Don't say to yourself "well, he's too busy; I'll catch him next time".  Get your questions answered and your needs addressed now!

DO:
Be positive.  It always make the conversation more fun.

I haven't posted since the walk (which was great, by the way!) because I really don't like posting too much negative stuff.  I'm an optimistic person, and I believe in the power of positive thinking, but there are times in anyone's life that can be more challenging than others.  Since things are getting better now, maybe I can relate this story; it might be helpful to someone.

I believe I mentioned that my doctors at Stanford and I don't communicate very well.  When I went for my DBS adjustment on May 1, this became a real problem.  What they do is adjust the pulse width (duty cycle), frequency and amplitude (voltage) of the pulse train that the DBS stimulater sends to your brain.  Since last time the left side of my body came out better than the right,  this time they adjusted the right side of my body a little too much.  The result was some pretty severe dyskinesia on the right side.  I couldn't even walk by the time i got back to work.  For a long time, it felt like my right foot, ankle, knee, hip and arm were being pulled in different directions by some sadistic torturer.  The doctors told me I needed to cut down on Sinemet and Stalevo and Requip to combat this, and that seemed to help, but they didn't tell me how much to cut down and when.  You can't just stop taking Requip, for example; you have to cut down slowly.Also, I still had Parkinson's symptoms to deal with on the left side.

Meanwhile, i was getting tired of breaking things because my right arm jerked around at the wrong moment, and not being able to do any of my hobbies, and I could really do without the pain.  I called my doctors, i emailed, but because i mentioned that things were getting better slowly, they just said "good; see you in August".  I guess I didn't really make it clear how much I was suffering.

Finally, I went back to my doctor at Palo Alto Medical Foundation, the one who diagnosed me in the first place.  He's very good with medications, he knows me, and most importantly, he listens. He helped me cut down on my medications correctly and explained that the DBS implant should be viewed as a medication dispenser, essentially.  If you take a lot of medications with it, most likely you'll end up with the same side effects as you would get from too much of any dopaminergic therapy.

So now, i'm  on the Neupro patch, and the only oral medication I take is an occasional Amantadine to combat the dyskinesia.  the only pain I have left is in my neck and shoulders, and i have an appointment with a physical therapist to deal with that.

I guess it comes down to good communication, and I know that's my responsibility.  I plan to post a list of "Do's and Don'ts" for communicating with your doctor; let's see if I can follow my own advice, first!

Walk on Saturday!

This will be my last post before the Parkinson's Unity walk in NYC on Saturday, the 27th.  I will post pictures of the event itself here and on Facebook. I hope that anyone reading this who can donate will do so.  If possible, please support me and my team (The Castle Stormers) or just make a general donation to help find a cure for Parkinson's disease.  Thanks so much!

can you believe it?  Last night I was running around with no shoes on, and now I have broken toe.  PLEASE forgive my language, but @#$#$%^%&&&^^**&^^%$@!!!!  Now I have to walk the whole 1.4 mile walk with a broken toe!!!!!.   wait a minute; what am I  talking about?  At least I still have legs... Sorry; I feel bad for our whole species right now.