About three weeks ago I had a strange experience, which I did not report because I was afraid it might just be a fleeting happenstance. We were on a break from our dance for PD program when I decided to put in the DVD so I could do the dancing on my own (sitting in a chair). When it came to the part where I was supposed to lift my right arm, the arm went straight up, which it is not been able to do for nearly 2 years. I almost wept with delight. It has been mobile now for three weeks, with some pain when I am nervous or holding the same position for a long time, but nothing, nothing like it has been for months and months. I don't know what to ascribe this to. Maybe it just got tired of being stuck. I certainly hope it stays this way.

We are headed to New York for meetings with PDF and then on to Johns Hopkins for cognitive testing and then on to NIH for more cognitive testing. Lots of blood letting in the next week and a half and a ton of MRIs, plus one spinal tap. hopefully this will help some researchers find biomarkers for our shared disease.

This has been an interesting, challenging, creative month with many changes. I am honored to be a member of the People with Parkinson's Advisory Council PPAC for the PDF. We spent nearly three days together in NYC, meeting new members who bring a wonderful array of skills and insights to share with those who are interested in hearing from PD patients. It is interesting to me to note how much emphasis is now placed on e exercise as therapy, obviously one of my key concerns. We joined the Unity Walk in Central Park where I happily met several people from this forum and hopefully helped some of the people who came to the PDF booth.

From NYC we went to Baltimore for a two day research study at Johns Hopkins looking for biomarkers and cognition indicators, culminating in spinal taps for both me and my husband (he is a control in the five year study). On to DC and NIH for two more days of cognition testing, 3T and 7T MRIs and blood samples. I know some of the parts of the cognition tests by heart by this time. I think I'm in or have been in 13 studies now.

On to Gettysburg for three days on the battlefield led by Civil War historian, James McPherson, a gift after many days for PD. Walking the field across Pickett's charge was the most powerful experience.

Through all of this I was not able to ride a bicycle except for one time at a hotel, which was hardly adequate for my needs. I could hardly wait to get home to get back on the bike.

After we got home we left again for another week on the West Coast of Vancouver Island in Canada. Biking was replaced by kayaking and hiking in indescribably beautiful areas. Again, however, as soon as I got home I was on the bike.

At the same time as all of this was happening, I decided to start taking Sinemet after avoiding it for 6 1/2 years. I started on two pills a day, keeping my 6 mg Neupro. That worked pretty well but there was some definitely off time in the afternoon. My doctor recommended three times a day with the Sinemet, so yesterday I started on that. I also switched from Neupro to Requip XL 6 mg. I am so hopeful that the Requip works as it is much cheaper and more comfortable than the Neupro patch. So far so good on day one. For most of the day it felt like I did not even have Parkinson's. I was even able to type most of this message, although now I'm using a headphone to dictate.

I have finished writing a book on all of these experiences, tentatively titled "if I can climb Mount Kilimanjaro, why can't I brush my teeth?" Now I'm looking for a literary agent, so if anyone has a clue or connection, please feel encouraged to share it with me.

The Pedaling for Parkinson's program continues to expand to other states and other sites within our state of Washington. I am most pleased with its progress and with the changes that it is making the lives of so many people.

Nan, best of luck with your new meds. Also, it was a pleasure to meet you at the Unity Walk. I totally agree with you about exercise. I know it makes a huge difference for me.

Thank you for your participation in clinical trials. I'm part of a group here in Connecticut encouraging more participation in research trials. We have a program that arranges transportation to and from the trial site for groups of PWP and controls. It is actually fun going with a group of like minded people so dedicated to move research forward. - Stand Tall

The Davis Phinney Foundation just put out a new webinar that you can watch online:

WATCH THE NEW LIVING WELL CHALLENGE WEBINAR
The Effects of Forced Exercise on Parkinson's Motor and Non-motor Symptoms
Today we launch a new Living Well Challenge webisode, featuring Jay L. Alberts, Ph.D. of the Cleveland Clinic. Dr. Alberts discusses his research into the effects of forced exercise on a range of Parkinson's symptoms and compares and contrasts outcomes of voluntary and forced exercise. Dr. Alberts' tandem studies are well known in the Parkinson's community, and his presentation offers compelling data and motivation for advancing the study of therapeutic exercise as a viable treatment option. Watch the video to learn more about this fascinating area of Parkinson's research

http://www.davisphinneyfoundation.or...ng-pd/webinar/

This site will give you access to the presentation by Dr. Alberts and will allow you to download the slides that he refers to in his talk.

Since we returned from Canada I've been able to cycle nearly every day. This week the Dance for PD class started again too. My husband and I have been training on a tandem for the ride across Iowa in late July. We look like a couple of comedians. Thursday we stopped and just fell over, thump. No one was hurt but I don't like not knowing where I'm going and having no control over speed, braking or anything. At the end of the ride he gently asked me if I thought I might be able to ride Iowa on my solo bike. What a relief. I'm sure it will be tough but I'm doing pretty well alternating 25 mile rides pretty much on the flats with going up and down the steep hill near our home. I'm feeling more and more energetic and just stronger. I'm so glad I added Sinemet too. 25/100 3/day plus Requip XL 8 mg in the morning.

I got my first rejection letter from a literary agent today. I expect there will be many more but hopefully my book will be published at some point and you all can critique it.

Speaking of books, I'm starting to read "Madness and Memory: The Discovery of Prions--a new biological principle of Disease" by Stanley Prusiner, MD, Nobel Laureate. I expect it will provide valuable insights into our disease. Hopefully I can sort of understand it.

Happy Father's Day all you dads.

You're still not doing that bad biking across IOWA on a non-tandem. It took about one 2hr ride on a tandem to realize how much practice it would take to feel safe much less enjoy riding one and I quit. It was never fun.
Your're taking 1/2 of a 50/200 sustained release or a 25/100 immediate release sinemet?
it would be interesting to read the details of how you switched from neupro to your current drugs and what symptoms are better. did you taper off the neupro or just switch? are you taking generic or brand requip xl cuz i think you said before the generic requip wasn't effective? sorry to be so nosy.

Not nosy at all. I learn a great deal from you. Isn't the 25/100 sustained release as well? I've been cutting the 50/200 ER in half but thought the pills would be more equal if they came as 25/100. If the 25/100 aren't sustained, I should change the prescription and will do so thanks to you.

I just switched from Neupro to Requip XL. No problem. I insisted on having the non-generic Requip XL after my earlier problems with the generic. It's expensive, but about half the cost of Neupro and I have no chemical burns that I had with Neupro. Plus, I can go swimming again and sit in the hot tub.

I'm REALLY careful with what and when I eat. Empty stomach for the Sinemet and Requip right after breakfast.

My shoulder pain is almost completely gone, making me feel safe on the bike outdoors again.I don't know how people ride the tandems outside, but they are great for the PFP cycling classes inside.

There are now 24 PFP authorized programs around the country.

thanks!
the 25/100 comes in both the IR and CR form. the CR is oval, the IR is round. IMHO, not a bad idea to have IR available when you need an extra boost, CR not kicking in or you need a quicker affect , IR kicks in in about half the time as CR. gotta be careful though that you don't take too much, you can split the 25/100IR and take 50mg whereas I believe you negate the controlled release aspect if you spli the 25/100CR - it's ok with the 50/200 to split them.

Nan
I love the title of your new book. Whenever my hands and arms refuse to do the motion for brushing my teeth, I have found that this works- I load my toothbrush with paste, look in the mirror to place my brush in the proper position, then I shake my head back and forth! It doesn't get those back molars very well, but it's better than trying to brush with "off" hands! Give it a try. Lol

Peggy

PS
I miss being on PDF's Advisory Council so much!

I've been training and training, rode 50 miles on the 4th and was still marginally human after the effort. Most days it's either 20 miles or up and down hills. Every day when I start out feeling full of PD and then get on my bike, my symptoms just disappear, at least while I'm riding and for a while after. I'm eager to try RAGBRAI again. We leave for Iowa this week so we can get in some fly fishing along the way. I'm curious as to how I'll do with tying on the flies, casting and keeping my balance in the rivers. Won't know until I try. I'm probably nuts for doing this Iowa ride, but it will be another story. More rejection letters for the book. Chin up Nan. I'm not accustomed to waking up nearly every morning to another rejection.. My mother would tell me I'm building character. I think I'm character enough. I ramble. I'll post along the road when I'm able. Be well.