Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 07-07-2014, 07:43 PM #281
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by Nan Cyclist View Post
I've been training and training, rode 50 miles on the 4th and was still marginally human after the effort. Most days it's either 20 miles or up and down hills. Every day when I start out feeling full of PD and then get on my bike, my symptoms just disappear, at least while I'm riding and for a while after. I'm eager to try RAGBRAI again. We leave for Iowa this week so we can get in some fly fishing along the way. I'm curious as to how I'll do with tying on the flies, casting and keeping my balance in the rivers. Won't know until I try. I'm probably nuts for doing this Iowa ride, but it will be another story. More rejection letters for the book. Chin up Nan. I'm not accustomed to waking up nearly every morning to another rejection.. My mother would tell me I'm building character. I think I'm character enough. I ramble. I'll post along the road when I'm able. Be well.
i don't think your're nuts, just insane. have you practiced avoiding tornadoes and rainstorms of biblical proportions?
soccertese is offline   Reply With QuoteReply With Quote

advertisement
Old 07-14-2014, 07:07 PM #282
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

Soccertese, I HAVE practiced avoiding the tornados and storms. Don't park your van under a doubtful tree when there is a tornado warning. Once the whole PFP group moved from tents to a funeral home because of a tornado warning. One year we rode 4.5 hours in a torrential rainstorm, couldn't see with the glasses on and without them the rain hurt my eyes. But we from Seattle know rain. It was the heat in 2012 that nearly did me in. Thunderstorms are predicted for this trip. We'll see. Thanks for your "encouraging" words!
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (07-14-2014)
Old 07-14-2014, 10:22 PM #283
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by Nan Cyclist View Post
Soccertese, I HAVE practiced avoiding the tornados and storms. Don't park your van under a doubtful tree when there is a tornado warning. Once the whole PFP group moved from tents to a funeral home because of a tornado warning. One year we rode 4.5 hours in a torrential rainstorm, couldn't see with the glasses on and without them the rain hurt my eyes. But we from Seattle know rain. It was the heat in 2012 that nearly did me in. Thunderstorms are predicted for this trip. We'll see. Thanks for your "encouraging" words!
i spent 2 years in madison, WI, attending their "UW", riding my bike to school when possible so got to appreciate getting soaked in thunderstorms. bring some rain back with you, it's a dry summer.
soccertese is offline   Reply With QuoteReply With Quote
Old 07-15-2014, 07:12 PM #284
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

I'll do my best!
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (07-15-2014), violet green (07-15-2014)
Old 07-21-2014, 03:36 PM #285
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

Short report from Iowa. Toasty and windy yesterday and today. Yesterday I rode 62 miles and 45 today. 80 tomorrow. I was so concerned I wouldn't be able to do it but so far so good.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
badboy99 (07-22-2014), rainbow676 (07-22-2014), soccertese (07-21-2014), Stand Tall (07-22-2014)
Old 07-28-2014, 02:01 PM #286
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

Notes from RAGBRAI. With much anxiety I started RAGBRAI on Sunday with Doug and the 65 riders of the Pedaling for Parkinson's group. I know the disease continues to progress and I wasn't sure I was up to the ride. But as soon as we drove into Hull, IA and I saw old friends and new, I felt confident that the ride would be good, not fast, but good. We have seven riders with Parkinson's on our team, riding everything from recumbent tricycles, to tandems to solo bikes. Four men and three women, all early onset but me, and representing many stages and iterations of the disease.

We've been staying a the homes of friends and relatives and at retirement/nursing homes. The latter give me a sense of what may come someday. We find the staff uniformly kind and generous, and certainly welcoming to our group. I think we give them discussion topics for months to come. Sunday and Monday were windy but not too hot. Jay gave talks each evening and asked each of us to share our stories, inspiring to us as well as to the guests. Tues was a long day but fun and confirmed I can still ride day after day. Wed. Jay spoke again, this time to a much larger crowd and then he and I were interviewed by a TV reporter. http://kimt.com/2014/07/23/pedaling-...with-her-bike/ The story played Wed. night and Thurs morning. Quite fun. Thurs our professional photographer, Lee, asked me to ride the last ten miles with him and a couple of the super riders so they could block out space and Lee could take action shots. I felt like a princess. Never had so much attention on a bike! We arrived in Waverly and didn't know how to get to the host house so we went to the fire station to ask and they ended up leading the way for us with a fire truck, more like a big pickup with fire gear. Much laughter and many photos. Today it poured and I got so cold I had early hypothermia so had to sag in. Hundreds of people packed the school cafeteria but the ladies took one look at me and hauled me into the kitchen and sat me down in front of the warming oven. Oh, the experiences I have with Parkinson's! Tomorrow is the last day. Glad we came. Addendum. Rode 82 miles on Sat, including flying downhill at 35 mph, not smart, but quite a thrill. I'm just now, 48 hours after the ride, feeling awake and normal. My symptoms are clearly reduced. RAGBRAI was hard, but worth every minute. Thanks for all your kind thoughts and positive energy.

“Pedaling for Parkinson’s”
kimt.com
Through cycling, a woman gets her body back after being diagnosed with Parkinson's Disease.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bogusia (07-28-2014), Lana (07-28-2014), shcg (11-05-2014), soccertese (07-28-2014), Stand Tall (07-29-2014)
Old 08-03-2014, 11:36 AM #287
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default Just a few days before he was set to ride across Iowa on his bicycle, Mike Fahning wa

http://www.nhtrib.com/news/article_e...9bb2963f4.html
soccertese is offline   Reply With QuoteReply With Quote
Old 08-28-2014, 10:31 AM #288
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

The month flew by! Two events worth noting. The Glenn Erickson Pedaling for Parkinson's Ride netted over $12,000 to help start/sustain PFP programs in Western Washington, especially at YMCAs. 134 riders, including Soccertese, braved the hills of Redmond, WA and enjoyed the awesome bbq at the end of the ride. We have had requests from several Ys around the country to help start programs.

The other event was the MJFF/AbbVie Partners in Parkinson's day-long symposium in Tacoma. Nearly 500 people, about half with PD, attended, gaining practical advice as well as learning about current research in the field. My husband and I were part of the "doctor's visit" panel in which we had an intimate meeting with "our doctor" in front of the 500 family members in the audience. A novel experience, but one that I hope was helpful. We stressed cognitive issues more than movement issues as those seem to me to be ignored much of the time. Of course we emphasized pedaling as a key therapy and recommended the Peripatetic Pursuit of Parkinson Disease as a key resource.

I have been able to ride about 20 miles 4-5 days each week, keeping me somewhat mentally alert and physically pretty strong.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
lab rat (08-28-2014), lindylanka (08-28-2014), soccertese (08-28-2014)
Old 08-28-2014, 12:18 PM #289
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by Nan Cyclist View Post
The month flew by! Two events worth noting. The Glenn Erickson Pedaling for Parkinson's Ride netted over $12,000 to help start/sustain PFP programs in Western Washington, especially at YMCAs. 134 riders, including Soccertese, braved the hills of Redmond, WA and enjoyed the awesome bbq at the end of the ride. We have had requests from several Ys around the country to help start programs.

The other event was the MJFF/AbbVie Partners in Parkinson's day-long symposium in Tacoma. Nearly 500 people, about half with PD, attended, gaining practical advice as well as learning about current research in the field. My husband and I were part of the "doctor's visit" panel in which we had an intimate meeting with "our doctor" in front of the 500 family members in the audience. A novel experience, but one that I hope was helpful. We stressed cognitive issues more than movement issues as those seem to me to be ignored much of the time. Of course we emphasized pedaling as a key therapy and recommended the Peripatetic Pursuit of Parkinson Disease as a key resource.

I have been able to ride about 20 miles 4-5 days each week, keeping me somewhat mentally alert and physically pretty strong.
i also attended the PinPARK event and have to say with no bias that the interview with you and your husband and the subsequent "exam" by a MDS on stage was by far the most interesting part of the "show". too bad it wasn't videotaped or was it?
soccertese is offline   Reply With QuoteReply With Quote
Old 08-28-2014, 11:42 PM #290
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

Thanks Soccertese. I'm sure it wasn't videotaped but they might have made an audiotape of it. Was it the format you liked or the content?
Nan Cyclist is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Pedaling for Parkinson's Stitcher Parkinson's Disease 4 04-12-2017 11:47 AM
Oprah talks about dystonia and Parkinson's disease Stitcher Parkinson's Disease 0 03-30-2009 04:38 PM
Pedaling for Parkinson’s -- Full Length Doctor's Interview Stitcher Parkinson's Disease 2 08-15-2007 09:55 AM
'Pedaling for Parkinson's' group hits RAGBRAI Stitcher Parkinson's Disease 0 07-30-2007 09:18 PM
Dystonia - help? lou_lou Parkinson's Disease 8 09-24-2006 05:54 PM


All times are GMT -5. The time now is 09:22 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.