http://www.theracycle.com/parkinsons...bike-study.php

I just returned from Traverse City, MI where I gave three talks on PFP (using the first DVD I have ever made!) The talk at the Senior Center PD Support Group was particularly poignant. One couple told me they were heading straight to the bike shop. Another man said he was still reeling from his diagnosis last week and this gave him hope. Someone had sold their bike because of balance issues but was going to get a three wheeler. The stories went on and on.

I was a bit concerned about giving the talks because I had just dropped my ReQuipXL from 6 mg. to 4 mg., but this was not a problem. In fact, I felt more energy than when I was on the larger dose. I was able to use my brother's mountain bike on a trainer in the garage to spin for an hour each day. That helped a huge amount. We also discovered that the more tired I became at the end of the day, the best option was to get out and walk for a half hour or so.

what exactly are you suggesting these people do?

I don't suggest what they should do. I tell my story and they choose if they think it's something they can try. My dvd is 5 parts: 1) the MSNBC clip from 8/08 (on the PFP website); 2) slides of RAGBRAI 2009; 3) slides of what I do now, either biking outside or on a trainer when traveling or when the weather is poor; 4) slides of my "obsession", making quilts, which I started in 2007 and couldn't stop doing once I was on Mirapex. I still make lots, but not with the 3:00 a.m zeal that I did earlier; 5) the ABC-GMA clip that ran during RAGBRAI last summer. At the beginning I talk about getting the symptoms and how physically and mentally I was compromised. Then about losing most of my symptoms after training at a crazy pace for RAGBRAI. And about what life is like now. I feel more energized now that I have cut my medication in half because of the changes in my body from forced paced cycling.

I am clear to say that this is my experience and not to count on it being their experience. But for all of us sliding down this slippery slope, at least this is an ice axe they may be able to use to arrest the descent.

Ever interested in research, I thought I'd share this experience with you. I have REM sleep behavior disorder and take .5 mg of Clonazapam each night, but I couldn't recall in the middle of the night if I had taken it or not. I seldom forget to take it however.

I had an interesting experience a couple of nights ago. I woke up at 2:15 with an uncomfortable sense of electricity coursing through my body and centering on my right arm (the one that shakes). The arm hurt. I lay there until 3. Got up and did stretching and Sudoku until 4. Tried sleeping again with no luck. Got up at 5:45 and put on my bike clothes and rode for an hour at 90-95 rpm on the trainer. I finished at 6:45 and went back to bed with no more electricity feeling or aching arm. Slept until 7:45 and felt fine all day. I don't know what to make of it, but it felt like I was giving that extra energy a place to go, equalizing something in my system.

I thought about it and realized that when I bike nearly daily, it's like putting a plug in the wall and getting extra energy that lasts all day. But every once in a while at night I wake up with my arm shaking and that coursing feeling and I'm generally up for the rest of the night and am a basket case the next day. Hence the experiment. When it happens again, I'll bike right away and see what happens. I wonder if anyone has any idea what might be going on.

Great News! Northwest Hospital in Seattle has approved a Pedaling for Parkinson's class to start July 20. The pilot will have 4 pwps and run for 8 weeks. After evaluating the pilot, we expect to be in position to assist other sites in setting up tandem cycling classes. We are currently fundraising to be able to buy more tandems and in general, help others start at their sites. This has been six months in the making, so it's quite a thrill to see it really happening.

If you wish to donate, go to: http://dpf.kintera.org/faf/search/se...A&team=3696781

If you wish to be put on a list for help with start up or more information, send a message to: info.pfpnw@gmail.com

I just recently returned from riding my bike across Iowa in RAGBRAI, 450 miles in a week. The story of the ride and the remarkable recovery of several of us pwps is on the pedalingforparkinsons.org website and on my site: http://home.comcast.net/~nan.little/site/ The most amazing member of our group of 50 riders was Andy, age 39, 8 years into PD but also has Crohn's and asthma. Three years ago he was using a cane full time. Then he started forced pace biking intensely and within a month he was able to give up the cane. His diet controls the Crohn's with no meds. He rode across Iowa on his own bike.

All of Dr. Alberts' research continues to show the efficacy of forced pace biking on reducing PD symptoms. The biggest caveat is that pwps must have medical clearance to be sure that they have no heart issues that could be exacerbated by the cycling.

Life has been a little crazy, which means I haven't visited this site for a long time. But to bring you up to speed. 1. Northwest Hospital is preparing to start their third round of the pedaling class. All participants have been enthusiastic about the class, some reporting more changes than others. 2. Two of us from the RAGBRAI group have been invited to climb Mt. Kilimanjaro with an MS/PD team next summer. That means even more working out. I didn't realize my core was so mushy. I continue to bike at least four times a week in addition to the new workouts. 3. Dr Alberts was the keynote speaker at the Parkinson's Hope conference in Seattle in early November. He was great. Nearly 800 people were there. 4. I became a grandma twice in November, our son and his wife had a boy on the 12th and daughter and her husband had a daughter on the 24th. How great is that?! I decided I want to keep exercising as long as I can so I can play with them when they are 15 and I'm 80.

You may get a kick out of the cycling video posted on You Tube: http://www.youtube.com/watch?v=kUgVr4Nqai0

Hello Nan
It has been nearly a year since I posted that I was cycling daily. The maximum that I could achieve then was 80-90 rpm for 15 min.
You would expect that with the progress of the disease, there would be a reduction in my rpm/time rate achievable. So I am glad to report the amazing feat that I have been doing 80-105 rpm for 45 min every single day for few months now.
My morning routine starts by taking one tea spoon of creatine, 15 gm whey and 3 spoons of coconut oil. Followed by 45 mins of yoga and taichi then I do 45 mins of cycling at 80-105 rpm. I do that while listening to my favorite music and making a point that I concentrate on the music melodies and beat. I always end up very wet in swet and have 5 mins of freezing cold shower.
Afterwards I take a heavy breakfast of two fryed eggs, cheese, tuna and nuts but no bread. When this is done it is usually about 11:30 am. I start working on the computer and take my first sinemet pill (25/100) at 12 am.
All this said I must add that while I fully enjoy this routine which is keeping me in perfect athletic state (no stiffness or mobility problems) it failed to help my dominant problem which is tremor that has been getting steadily worse. I am 67 old and have been diagnosed with PD since sept 2006.
I hope this will help some.
cheers.
Imad