Tomorrow morning I leave for Wisconsin to give a talk at the Wisconsin Parkinson's Association annual meeting on Friday. I'm excited to meet many people there and to share the experience of Pedaling for Parkinson's. Unfortunately, it looks like my biking outside is curtailed for the whole summer. I went to the doctor yesterday to see about my broken finger and it has not progressed at all. The x-ray looked exactly the same as it did three weeks ago. They reset the break for another three weeks hoping that the bones will knit and I can avoid surgery. It's not quite so much fun cycling in the basement, but at least the outcome is the same.

Nan,

Enjoy your trip to Wisconsin and I hope your finger heals soon so you can get back outside pedaling!

Nan,

I just wanted to say "hi". Glad to see you are still doing really well despite that finger.

Thank you for joining in on trials. I have passed the first round of screening for the NIH's GDNF trial. If you can think of a way we can get YO people more motivated, then please share. We need each other. If I do make the cut I am hoping a blog chronicling the process would be a nice counterpoint to the DBS stories out there.

May I ask which trial involves a 9 year commitment? I am looking at 5 years and wondering...

Laura

Hi Laura,

Good to hear from you. I hope all is well.

I am involved in several research studies, some from the NIH and some from the Udall Center here in Seattle. At the NIH I was screened recently for being involved in the project titled "the genetic characterization of movement disorders" and was accepted for participation in that project. This is a long-term project that will last from 5 to 10 years. I am told that I will be in it for the 10 year duration. The sponsor of this particular project is the National Institute on Aging at the NIH. "The purpose of the study is to learn more about the natural history of movement disorders and their causes and treatments. The research is being done because identification of genes will lead to better understanding of movement disorders and treatments." Once I passed the screening test, I was eligible to participate in the NIH Parkinson's Imaging Study. Over the course of the next three days I had an extensive evaluation and then a three Tesla MRI scan, an ultrasound of the brain and a 7 Tesla MRI scan as well as a blood draw. They pay for all travel, food, and housing expenses incurred in participating in this program for visit once a year and they make all the arrangements and also pay for a caregiver to join.

At the Udall PANUC Center here in Seattle I am involved in several research programs:

The galantamine study to test improvements in cognition

A study to test control movements

Alzheimer's disease research Center: participant registry and sample repository

the PaGeR study to identify genes that increase the likelihood of developing certain PD related problems such as difficulties with thinking and memory

PANUC clinical core and data management study (this is a spinal tap one) that puts us on the list to receive new opportunities for healthcare

Obviously, I believe in the benefits of scientific research. I think that being a lab rat participating with scientists is the most likely way that we have to develop new ways to mitigate or find cures for our disease. In that vein I have also donated my brain for autopsy for any help it may give. I think I will be done with it by then!

On a lighter note, my trip to Wisconsin was wonderful. I so enjoyed meeting folks from the Wisconsin Parkinson's Association and talking to such a large group of interested patients and caregivers and doctors. I continue to bike in the basement with my finger in a plastic splint.

Always feel free to ask any questions.

I will write in another post about engaging people in activities.

Regarding engaging people, particularly young onset. Are you familiar with the work of Mark Burek and the young onset group that is on Facebook? This is an invitation-only group and Mark invited me to be part of it, although at age 67, I don't see how I qualify. Nonetheless, it's an interesting active international group of people who have young onset for the most part, except for me.

I think that fear of failure is one of the most debilitating things that we face with PD or any other condition for that matter. Although we know that research shows that if we exercise, particularly by doing bicycling or tai chi or tango, we will mitigate some of our symptoms there's always the fear of "what if I try and it doesn't work for me?" If I don't try, at least there is something still waiting in the wings for me. But what if I try, and I fail? Then there truly is no light at the end of the tunnel and I might as well curl up and quit. That mindset, coupled with the natural increase in anxiety that happens with PD, probably keeps more people from exercising than anything else. It is also hard work, very hard work, to exercise at the level one needs in order to truly mitigate symptoms. And, it is a lifestyle change. You cannot just exercise for eight weeks and call it a day. It is something that you do for the rest of your life, like taking your medicine. I find it is a lot easier for people to increase the medication than it is for them to make that commitment to exercise.

I have had the same problems myself, so I am truly speaking from experience, not just theory. Interestingly enough, I find that when I speak to large audiences, many of the people come up to me afterwards and say that they are making the commitment to do the hard work to make the change. There must be something about seeing this older woman with white hair on a bike in front of an audience, showing slides about climbing Kilimanjaro, riding across Iowa, and climbing to Annapurna base camp that means something to them. I think I embody an image that says to them, "If she can do it, by golly, so can I!" How many people follow up with it, I don't actually know.

We are finding that the most difficult part of starting the YMCA programs is getting people to come in the first place. Once they come, most of them actually stay, in part for the camaraderie as well as for the healing that happens. If their doctors would tell them that they can do this, I expect many more would be likely to do so. So getting through to the medical community is huge. I have had marginal success in that so far. Any help you can offer would be greatly appreciated. The newly diagnosed community is the group that will benefit clearly the most. That said, many people with stage two and three are benefiting from the cycling program as well. I sure am open to more thoughts and suggestions!

Hi folks,

Jan just completed several months of forced cadence therapy in Portland, Oregon at OHSU. Her response was marvelous. Now that Medicare has drawn the line at further sessions, we are ripe to set up a PforP program in the metro Portland/Vancouver area.

Anyone nearby and interested?

Trisha

This is an "hooray!" message. I broke my finger six weeks ago and after the first three weeks the break had displaced so I had to start all over again. Today I went to the doctor and the x-ray showed the finger is in perfect alignment. Off with a splint exclamation! On with the therapy! Hopefully I will be able to ride outside again by mid-August or September. Riding in the basement does not cut it when the weather is perfect outside, but it's better than not riding it all. Time to wash my hand that has been in a splint for three solid weeks.

TrishaPDX,

You wrote:

"Jan just completed several months of forced cadence therapy in Portland, Oregon at OHSU. Her response was marvelous."

This is great news.

I'm unsure where the state of the art is with respect to forced exercise.

I'll be grateful if you would explain what the forced cadence involved?

There's a number of things it could be anywhere on a spectrum:
- passive, a machine or human helper moves your limbs for you at this rate;
- active, all the energy input comes from your limbs.

The distinction that I'm interested in is the difference between sitting at the back of a tandem with your feet turning with the pedals at a fast rate, but doing no work, and actively powering the machine by turning your feet at the same rate, but inputting energy.

Was it the cadence that was important or the exercise?

Thanks.

John

John, these are excellent questions. Since Tricia didn't respond, please allow me. The research done by Dr. Alberts shows that people on a tandem have following distribution of energy output: 75% of the energy is provided by the captain on the front and 25% of the energy is provided by the stoker on the back. For whatever reason, the cadence is the key. The patient must be riding at 60 to 80% of his/her maximum heart rate and maintain the cadence of 80 to 90rpm. The captain can adjust the resistance until the stoker is riding at the proper RPM and heart rate.
Obviously a solo cyclist is providing 100% of the energy. The key still appears to be to maintain the proper cadence of 80 to 90rpm or higher if the proper heart rate is maintained.
I hope this helps.

This was a fabulous day! Wonderful riders, many almost professional riders, gathered together for the Glenn Erickson Pedaling for Parkinson's ride, a fundraiser to expand the PFP program throughout the region. These generous people raised about $10,000 for PFP. We had a little program at the beginning where we talked about the meaning of pedaling for people with Parkinson's. The cyclists were excited to hear this story and promised to share with everyone they know. Several people from the area with Parkinson's rode, including two who rode the Seattle to Portland ride the week before, 204 miles, and Soccertese from this list.