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-   -   Pedaling for Parkinson's...and dystonia (https://www.neurotalk.org/parkinson-s-disease/114042-pedaling-parkinsons-dystonia.html)

Nan Cyclist 08-15-2015 02:13 PM

This has been a long dry spell of reporting, but much happening that merits comment.

RAGBRAI was different riding on a tandem the first four days. My captain could not have been better but I learned that I need to be in control of the pace and timing. I need frequent elimination times, eating the right foods at the right times and short breaks, not long rest stops. By Thursday I reclaimed my solo road bike to sag half the day and ride the last half, making me a happy camper again. Same for Friday and then I helped another person who needed a stoker for the half of the last day. The riding went well but the drive home was a marathon of 12 hour days sitting in the rear seat of a truck cab. My body stiffened so much that I was in pain for nearly a week after returning home. Pitiful. But lots of stretching, Dance for PD and some hiking squared me around and I am fine now. Point: Must pay attention to my body.

I volunteered at the UW Physical Therapy grad students final exams and had four students assess my shoulder/shooting pains down the arms problem. I expected almost no help since the problem has been going a long time and nothing seems to relieve it. But each student came up with a similar diagnosis and among them, they developed some creative ways of dealing with it. 1. I use a laptop and have been sitting incorrectly for years, leaning forward with my back curved and chin jutting forward. I resurrected a wireless keyboard, synched it to my laptop, put the laptop at eye level and the keyboard in the top drawer of my desk. I've been typing this way for two days now and feel great! 2. During the bike ride my seat and pedals were put on and off several bikes several times, resulting in exacerbating already strained posture. I'm having a PT fit me to my bike on Tuesday, which should help arm pain even more. 3. The assessed my painful finger joint that was broken over two years ago and recommended a hand strength gadget, which is not painful and actually seems to help, for now anyway. I'm so pleased with the efforts they made and the effects they have already had. Not having back pain is HUGE!!!

I gave a talk on my book last Wed. Everyone was most appreciative and 25% of the attendees bought a book. A couple sitting in front of me, nearly my age, cried softly through much of it and thanked me profusely at the end. There is something about hearing someone say you are not alone at all that is important. I have 11 more talks scheduled, from WA to VA, listed on my webpage: nanlittle.com.

An old friend learned about a possible hope for those of us with PD. Apparently a combination of drugs developed for malaria is showing promise at slowing/eliminating progression of PD in rats. I have signed up for more news in keeping with my lab rat status.

Peony 08-16-2015 01:15 PM

Thanks for the update. Was just wondering the other day how you're doing, and whether there was anything I could have done to stay in as good a shape as you are. I've been getting much worse (bad tremor, joint & muscle pain, balance, gait, sleep, the works) since back surgery last year, still doing some stationary biking (tho it's much harder to keep up a respectable pace), but also considering DBS. Legs cramp & curl & so walking's difficult to impossible much of the time. You seem to be doing great. Congrats on your bike ride & all your successes.

Nan Cyclist 08-17-2015 03:57 PM

Dear Peony, I'm sorry to hear you're having such a difficult time. I wish that cycling had the same outcomes for everyone, but, as with everything else with PD, individuals respond differently. I think (guessing here) that part of my success is due to the fact that I started cycling less than a year after my diagnosis so I was still not too heavily impacted from the disease. I'm doing quite well, but the disease is progressing along its diabolical path, albeit slowly. * I found my leg cramps and foot curls disappeared with cycling through the pain but maybe mine weren't as miserable as yours. Everyone has a different mountain to climb. That we climb at all is nothing short of heroic in my book. All the best.

Nan Cyclist 09-04-2015 06:37 PM

Another short report confirming what we already know and adding another twist to the story. We just returned from the Galapagos Islands where I didn't have access to a bike for two weeks. I felt myself getting weaker and weaker with diminishing stamina, partly due I'm sure to the fact that I was walking at the pace of either my 4 or 2 year old grandchildren. Of course we were at sea level most of the time. The last couple of days we spent in Quito, way up high. On the last day, when my energy should have been the lowest, we took a gondola up a mountain to 4,100 meters, which I think is about 13,421'. I thought my husband went a little higher so I walked quickly up the path to try to catch him. He wasn't there but I kept going, taking longer and longer strides and feeling better and better. I thought later of MJ Fox's description of being free from PD at altitude in Bhutan. I caught up with a young couple who looked at me oddly and asked if I weren't having trouble with the altitude? None. When I returned home, the first thing I did was go ride 16 miles and 20 miles the next day. Magic.

OlliePop 09-08-2015 05:59 PM

Thanks for the presentation today Nan, it was a pleasure to meet you. You are an inspiration!

Nan Cyclist 09-12-2015 12:28 PM

I'm so glad you introduced yourself. For a list of my upcoming talks, in WA, MT, ID, VA and OR, please check out Calendar on my website: nanlittle.com

Nan Cyclist 10-24-2015 10:03 AM

We are nearing the end of the 6 1/2 week trip that covered Washington Montana and Idaho. I have been giving talks in various places in between flyfishing on beautiful rivers. On Wednesday I gave a talk in Boise Idaho and learned a very important lesson. Do not schedule a talk during your off time! Halfway through the talk I needed to take my Sinemet, which I did, but it was the least effective talk I have given. Despite the one mishap, I've been truly honored and inspired by the people who have come to hear me speak. Many people bought the book and have commented favorably on it.

In a little over a week, we will be in VA and Baltimore, speaking and going through the next round of research tests at Johns Hopkins. If you are in the area, you can see my speaking schedule under Calendar at nan little.com.

Nan Cyclist 11-03-2015 07:01 PM

The BBC piece from THE WHY FACTOR show is available for listening. You can either listen to a short clip of Jay Alberts and myself (1:46) or the whole show (over 20 minutes). Of course, I recommend the whole show: http://www.bbc.co.uk/programmes/p036gg2v It took me about 10 tries to figure out how to access the whole show (click on the smaller image in the lower right corner) but it was worth it. Hope you like it!

Nan Cyclist 01-23-2016 01:28 PM

I see from some other posts that relevant studies have been published recently. All of the news confirms benefits of fast paced cycling, but I don't see studies that last for a long time. Four turns on the cycle doesn't seem to me to have a high chance of changing brain function. However, as I'm an anthropologist, not a neuroscientist, I defer to those in the field.

Two years ago I was unable to ski. I had to work my way to the download station at Whistler and give up on the idea of skiing again. My shoulder was frozen and my arm very painful. I'm at Whistler again and have just finished two days of skiing at nearly the same level I had enjoyed for years. In the interim I have continued to ride my bike almost daily at the high 80-90 rpm. A few weeks ago I visited my MDS and he told me that I am still at Level 1, eight years after diagnosis and ten years after experiencing symptoms. I hear almost daily from people who are making the difficult commitment to fast pace cycling who are experiencing benefits similar to mine. It's not all perfect. I have off times nearly every day, but I find that if I keep active during the off times, I don't notice them as much. Staying away from protein during the day seems to make a big difference as well. If I eat protein at breakfast or lunch, I often have a stomachache that might last for hours. Hopefully, these observations will help.

Nan Cyclist 03-08-2016 08:29 AM

It has been a curious winter. A few weeks ago my computer program that I use for cycling started registering heart rate spikes in the high 100s. I ended up with a VIO heart rate monitor patch for two weeks. I continued to cycle. A week ago last Friday I cycled for an hour and my heart rate stayed at 200 or above for about 35 minutes. I felt drained. That evening we went to dinner at a neighbors and on the way home my heart went nuts. I put on pulse of and it recorded 250. I spent the night in the hospital and have not been able to ride for the week. I see the cardiologist tomorrow morning. I'm not sure which is worse, the crazy pumping or not being able to ride. I can feel my body turning to mush.

Last night I gave a talk in Hermiston Oregon. What wonderful people!


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