Pedaling for Parkinson's...and dystonia

[Nan Cyclist]

A bit of an update. We are back at Whistler and my skiing continues to be less than stellar. I was hit by another skier yesterday which rather knocked the wind out of me for sure.

I'm continuing to do quite well on the Neupro patch, 4 mg. My biggest problem now is an increase in the tremor in my right arm as well as something that is wrong with my right shoulder which is apparently not related to Parkinson's. I am also part of a research study on Galantamine which will last for three months and which involves three functional MRIs. In addition to the MRIs I take 4 mg of galantamine in the morning and in the evening and after a month it will be raised to 8 mg and then 16 after another month. the whole thing is finished at the end of May. I tried taking a medication to reduce the tremor but the combination of that with the galantamine was pretty nasty so I stopped the additional medication. Instead I tried taking two ibuprofen about two hours after the galantamine and that is working reasonably well. I take the second galantamine at dinner time and then two more ibuprofen before going to bed.

In the meantime, I continue to cycle, but I'm finding it harder and harder to go a full hour at 80 to 90 RPM. I'm looking forward to being at home for a month and a half where I can bike nearly every day.

I made an important decision in my life. I'm not sure if it was the smartest, but it seems to be the wisest. It seems to me that somebody has to take part in these trials if we are to find answers to what causes Parkinson's and what will cure it. I am already 67 years old and don't have young children to worry about, except for my beautiful grandchildren, so I decided to sign up for trials, including drug trials which I had previously avoided. In addition to the galantamine trial, I've been accepted by the NIH as part of their PD study group. I'm not sure what all that will involve except I know for sure I'll be going to DC each year for nine years for MRIs. I presume there will be other tests involved as well as they become available.

Back to cycling, the Glenn Erickson Pedaling for Parkinson's Ride will be July 21. The group of people who are working on it is absolutely stellar. You can check out the webpage for more information.

[Aunt Bean]

The herb you are trying now was mentioned in the book Rhodiola Revolution for being used in conjunction with Rhodiola. I hope it works for you...sounds promising to me. God Bless!

[Nan Cyclist]

Tomorrow I double my dose of galantamine. After the first few days of adjusting to it, I don't really notice that I even take it. My tremor returned to normal within a few days as well.Although it's a drug that was developed for Alzheimer's, there are high hopes that it may help with Parkinson's dementia as well. So far I'm showing no signs of dementia but that is one rat I'd rather keep on the other side door.

The PFP program is growing by leaps and bounds. The Seattle Association is having a training for all the Ys in the Association, all 13 branches, and they will be set to start Pedaling for Parkinson's programs in the early summer or late spring. The Tacoma Y is planning on starting up in May, Ann Arbor is starting soon, and others around the country are working to put their programs together as well. It feels like we have reached a tipping point. Over and over I hear from participants that a really important part of the PFP program is the camaraderie they feel with each other working out on their bikes. Even if they don't want to come to class, many PWP's show up because they know that the other participants are expecting them. They also know that they will feel much better after doing it.

My husband and I borrowed one of the tandem bikes from the Seattle YMCA so we can practice and then ride in the Seattle to Portland ride, 200 miles, which will be in July. Another of the participants on this list borrowed another one of those tandems and is also practicing for the STP ride. High excitement here!

[Nan Cyclist]

Starting on a sad note. Last year, on Easter Sunday, my older brother died of ALS. The date was April 8, so do I mourn his death on Easter or April 8? Either way it's a sad day.

On a happier note, we take our tandem bicycle training on Thursday. It's a two hour training program one-on-one so they must be something special about riding a tandem. I notice that the Stoker, the person on the back, has nothing to do except sit on the bike and pedal. So the majority of the training is clearly for the Captain, the person on the front.

My husband and I went riding outside yesterday, nearly 17 miles, the first outside ride of the year. I barely made it home going uphill. Clearly, a great deal of work needs to be done before I ride with my son for 200 miles! I felt pretty horrible the rest of the day. I'm not sure if it was due to riding the bike, or to the newly doubled dose of galantamine. I stay on this dose for a month and then have it raised by one third. So I go from 8 mg to 16 mg to 24 mg for the last month of the test. I'm feeling better today. I plan to ride a 20 mile route tomorrow. Hope I make it. I'm sure I will.

Best to everyone.

[Arsippe]

Nan, so sorry to hear you lost a brother to ALS. I also lost a sibling to that brutal disease and it was not long after that that my first motor symptoms of Parkinsonism began (though I didn't really realize it at the time).

Good luck with all your cycling. I lost my way with it during the holidays and am trying to slowly get back in the swing of it.

[Nan Cyclist]

I see it's been a long time since I shared any thoughts. There is bad news and good news. I learned that the reason I had such a difficult time returning home after our first longer cycle ride is that I have a frozen shoulder. I've had four cortisone shots into the shoulder with no positive results. Then a friend of mine who is a physical therapist asked if she could try to help. After four sessions with her, my shoulder is close to normal. There is still work to do but I've gone from a pain level of nine to generally 1 or 2. While I was working on the shoulder by husband and I went on our tandem training ride. All went well until he and I were coming back to the cycle shop and we messed up on the start and over we went, my feet still clipped into the pedals, my hip bone going directly into the pavement. I am fortunate that nothing is broken, but even a week and a half later I still have a lot of pain in the hip and I'm unable to lift anything. I am allowed to ride on my trainer bike for 15 minutes a day after I've done all the exercises for both the shoulder and hip. Boo. But at least it's getting better and I'm eager to get back on the tandem to train for the STP.

Now the bad news is finished, time for the good news. I had a call from a YMCA in upstate New York asking if they could start a PFP program in all 15 branches of their YMCA Association! There have been other calls as well. I am more than a little excited at how many people will have the opportunity to cycle away many of their symptoms. More good news.... the Glenn Erickson Pedaling for Parkinson's Ride is coming together nicely. It's wonderful to see all these people who don't have Parkinson's working together to create a major fund-raising event to help those of us with the disease. People can donate to that by going to the pedalingforparkinsons.org website and looking for the ride on the donors list.

Tomorrow we head to New York for the PDF PPAC meeting followed by the opportunity to participate in the Parkinson's unity walk in Central Park. I will continue on to Washington DC where I will start participating in the NIH Parkinson's research group, yet another study that will hopefully bring real answers to questions about Parkinson's.

Be well.

[Nan Cyclist]

I met Davis Phinney at the Parkinson's Unity Walk in New York City and he said he was having trouble since he had not been able to cycle. Neither of us had been able to cycle for four days and we were feeling the pain of not doing it. When I cycle all the time, I feel pretty normal, but when I'm on the road it's really difficult to maintain my center of balance physically and mentally if I'm not able to cycle. Fortunately, while walking along in New York City I passed an LA fitness center and when I walked in they allowed me to get on the bike for 15 minutes for free even though I was in my street clothes. Just that 15 minutes helped. Then when I moved on to Philadelphia, my sister-in-law had found an old stationary bike. I could keep my feet on using rubber bands and was able to ride one hour a day for three of the four days we were there. Now I'm in DC and there is no bike at the hotel so I tried the treadmill but that's just not the same. Maybe they'll have a bike over at NIH that I can use after all my Parkinson's testing.

Mark Burek reported that the Albany New York YMCA is ready to open the Pedaling for Parkinson's program at all 15 branches in May. He has done a fantastic job of promoting the program! A big shout out to Mark!

[Nan Cyclist]

I was honored to be part of the PDF group at the Parkinson's unity walk in Central Park on April 27. I was interviewed by a reporter and was astonished today when I got a link to the interview. I get shaking when I'm nervous and I was both nervous and extremely tired at the time. Anyway, I hope you enjoy the YouTube video.

http://www.youtube.com/watch?v=XHRwd...utu.be&t=3m58s

[Stand Tall]

Originally Posted by Nan Cyclist

I was honored to be part of the PDF group at the Parkinson's unity walk in Central Park on April 27. I was interviewed by a reporter and was astonished today when I got a link to the interview. I get shaking when I'm nervous and I was both nervous and extremely tired at the time. Anyway, I hope you enjoy the YouTube video.

http://www.youtube.com/watch?v=XHRwd...utu.be&t=3m58s

Nan, loved seeing your interview at the Unity Walk. I’m so happy you are doing well.

Jill

[soccertese]

Originally Posted by Nan Cyclist

I was honored to be part of the PDF group at the Parkinson's unity walk in Central Park on April 27. I was interviewed by a reporter and was astonished today when I got a link to the interview. I get shaking when I'm nervous and I was both nervous and extremely tired at the time. Anyway, I hope you enjoy the YouTube video.

http://www.youtube.com/watch?v=XHRwd...utu.be&t=3m58s

thanks a million for your hard work nan, pedalling for parkinson's is a terrific program.