I've been posting my recent adventures on the thread about the Stanford Plasma Study. Not surprisingly I've had a lot of anxiety about participating in the study, partly because there is a high upside possibility as well as room for disappointment. Since I am also traveling to Palo Alto for two days each week, my biking schedule is interrupted. When we returned from our first trip to CA, it was really hard for me to cycle the full hour at cadence. My thighs hurt. But on the second day I was just fine.

We drove to Whistler BC on Sat. and went skiing Sunday. Although I felt anxious the night before, once I got on the skis, all was well. I still contend that much of my good fortune in dealing with PD is due to fast cadence cycling.

I presented on the topics you referenced at the FDA headquarters in a patient-focused panel discussion on Sept. 22, 2015. You can find a written copy of the presentation at http://parkies.org/FDA/FDApattersonSummary1.2.pdf . I am working on an expansion of this that I hope to publish at some point.

Like you I am frustrated with the lack of information on this topic. In particular I have not found ANY long term studies of high cadence aerobic exercises on human PD patients.

So I am doing my own amateur one. Hopefully it can be useful to an academic researcher who wants to see some possible directions. At this point I've been cycling for nearly seven years generally daily, keeping exercise session level information for the last 3 years, and detail input from wearable sensors for the last 1 year. At some point I hope to make some of this information available.

As far as cramps are concerned, I'd refer you to the work of Dr. Arnie Baker (Arnie Baker Cycling) who identifies elemental nutrients helpful for avoiding cramps: sodium (which we probably get more than enough of), potassium, magnesium, and calcium. See your dietitian for dosage suggestions.

I like upright bikes. If you have discomfort or pain when riding, take a video clip of your riding and show it to your physical therapist. Mine gave me useful suggestions.

Bill Patterson

It's no great surprise, but I find that the more activity I build into my days, activity on a regular, scheduled basis, the more I am able to live outside of my PD symptoms. It certainly helps that the Stanford plasma appears to be working so well, in my body at least. Realizing that meditation is generally helpful for anyone under any circumstances, I have added Yoga to my cornucopia. My week has 1.5 hrs of yoga on Sunday and Monday, 1/2 hr of meditation and 1 hr of cycling on Tues, at least 1 hr. of cycling on Wed., 1.5 hrs of Dance for PD Thursday, 1 hr of cycling on Friday and 1 hr. of cycling on Sat. On days when I don't have the community Dance for PD class I do it using the DVDs I got from Dance for PD. This way I can do focused exercise every day. I'm sure the combination of exercises must make a difference.

I just had a call from the Marysville, WA YMCA to say they are starting the Pedaling For Parkinson's program May 1. Yesterday I had a similar call from the Ft. Worth, TX Y. They are starting the program at two sites.

I'm told that on Sunday, April 9, the NBC Nightly News will air a segment featuring Dr. Jay Alberts discussing the new findings on the five year study of the effect of fast paced cycling on Parkinson's patients. A Pedaling For Parkinson's class from the Mill Creek WA YMCA will also be featured. The show airs from 6:30-7 in all time zones.

Here is the "Pedaling for Parkinsons" news item that Nan mentioned:

How Patients Are Using Cycling to Slow Down Parkinson’s - NBC News

(hat tip to Xenos at HU for the link)

Nan, can you give me any advice on adjusting medication for a long bike ride? My husband and I are going on a cycling holiday in France the second week in May. Our longest day will be 24 miles,and I'm assuming from my hiking experience that I'll have to take a bit more medication.i

With regards to your note on increased activity, I just had an interesting experience.. We went to Telegraph Creek in northern B.C. to help our son start up his birch syrup business. Tapping the trees and then monitoring the collector lines involved trudging up and down a hillside in up to two feet of snow with a lot of deadfall under it for several hours a day. I should say staggering up and down, my balance is getting worse! I just got better and better, my meds lasted longer, and I had very little freezing.

If you want to see a terrifying road, Google Telegraph Creek B.C. Road - it switchbacks up and down a steep riverbank, 20% grades, very narrow road with a cliff on one side and a 600 ft. drop-off on the other

Sorry for the slow response Wendy.

I have not adjusted my meds for my long bike rides. I find that following a consistent schedule works best for me. I have a vibrating alarm watch that goes off four times each day. Buzzer goes off; pill goes in. Like. your Telegraph Creek experience, I find that the more I do and the harder it is, the better I get. I don't think I would be riding my bike up a 20% grade however! My longest bike days have been 80-85 miles so I expect your 24 miles, depending on elevation gain, could be quite doable. It sounds like a great trip. We're going to float the Grand Canyon this summer. I don't know how I'll get any biking in, but we'll be doing a lot of yoga!

Why cycling works, from dancer Pam Quinn:

Why the Italian Man Can Ride a Bicycle
(Cycling for Freezing Gait in Parkinson's Disease - YouTube)
by
Pamela G. Quinn

When I am “off”my legs feel almost hollow. They exist half way between sensation and paralysis. They lack full sensory input and output. It’s a very strange feeling and hard to describe; it’s unlike anything I felt in my pre-Parkinson years. And yet it makes sense to lose sense when you have a neurological disorder. You would think that the ability to feel the spectrum of sensation-- not just the act of touching -- would be one of the five traditional senses.

When you see a person with Parkinson’s disease standing alone, there is something crumpled about the whole body; the knees are slightly bent, the upper back is slightly curved, everything is held but not extended. This whole body slump is due to the fact that we’ve lost the ability to lengthen and extend by pushing against something, (actually, there is passive curvature – when we’re unable to feel resistance- and there is active curvature, when the shortening of the abdominal muscles pull the front down,)

I know about how to achieve good posture from my 20 years as a professional dancer: dancers elongate and strengthen their spines and cultivate strong posture because they know how to push against and connect to the floor. - it’s sort of like an ongoing isometric.

We see a kind of crumpled posture in the Italian man who freezes repeatedly before he gets on the bike, (we all know who I’m referring to: Cycling for Freezing Gait in Parkinson's Disease - YouTube) But when he rides the bike, it’s not just the legs that change; his whole body changes. His legs move, his torso extends, he can even turn his head while riding, Why such total transformation? Because the bike both allows and forces him to
push with his legs; the very mechanism provides the extra stimulus his legs need to function properly. The rotation of the pedals gives him a reason to push – a cue if you will-and the push-away action reverberates through his spine. Having something to push against reactivates his sensorial system through a kinesthetic demand from the pedals in a way the floor cannot.

It also makes sense that activating the legs is key to helping PD. Our legs are our motor system, and the festination that occurs with our freezing and walking is due to the fact that our upper body is ready to move before our lower body, so we initiate movement by leaning forward and those little steps that ensue are an attempt to prevent us from falling, The lower half of the body is slow, the upper less so.. When the body operates with these different tempos, we have problems.

We see the Italian man before the bike but not after his ride..... my suspicion is that after his ride, his gait and posture revert back to their former state without the impetus of the pressure cue from the pedals.

Last month my son called me from the subway entrance saying he had forgotten his wallet and had no metro card or money to get him to school. I was in my PJ’s and hadn’t taken my medication yet, But I knew how to get to him. I got dressed, hopped on my bike and pedaled eight minutes to the subway. On my way home I was smiling, thankful for the wonderful Italian man who showed me how to help my son.

My work remains unfinished, however,. We know from Jay Albert’s studies at the Cleveland Clinic that prolonged biking at certain rpms can have lasting effects - that we can carry our head high and walk well even after we get off the bike, having stored our ability to extend our bodies by repeatedly having something to push against, which in turn activates our sensorial capacity.

My training has just begun.

Thanks Nan. There is no one in our community who knows more about movement for PD than Pam. Any advice from her is greatly appreciated!