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07-15-2016, 11:52 AM | #371 | ||
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I had the tests at OHSU on Monday. The colon part was actually fun, no pain and I got to watch it all. It reminded me of Pac Man, gobbling up chunks of my colon. The mandibular glands were much harder, because I could both hear and feel the samples being taken. The more they did the easier it became. They got the five samples and each time it just hurt for 2-3 seconds. The area is still swollen on Friday morning, but it has gone down enough for me to wear my bike helmet. I've been on the trainer up to now, but I'm planning to ride on the road in a few minutes. Tomorrow it's on to Iowa. While I was having the colon biopsy I asked the doctor about all the gas and incomplete bowel evacuation I suffer from and she told me to try Metamucil, one per day for a month and to keep a record of what happens. I've taken it for four nights now and haven't had any pain since I started taking it. For what it's worth.
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07-22-2016, 04:23 PM | #372 | ||
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We're in Omaha, two days from the start of RAGBRAI. It's 97 degrees and muggy. I wish I could ride in an air-conditioned bubble, but alas, it won't happen. As much as possible, I expect I'm ready. The Metamucil treatment is working well. My neck is nearly healed from the mandibular core sampling, just a little black and blue.
Many many people have logged on to the WPC2016.org website to vote for their favorite video. It's fun to be part of the process. Today is the last day to vote, so if you haven't seen the finalists yet, take a few minutes to enjoy. Breaking news. At 4:18 this afternoon it's registering 94 degrees with a heat index of 105. |
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"Thanks for this!" says: | jeffreyn (07-23-2016) |
08-01-2016, 08:11 AM | #373 | ||
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RAGBRAI is over and I was able to ride every one of the 420 miles on my solo bike. The first three days were beastly hot, with a heat index of over 100 each day. Each day I felt stronger and more able to go down the hills at full throttle and pedal as close to 80/90 rpm going up the next as best I could. I didn't expect to be able to ride all seven days. This experience showed me that more intense exercise for longer periods of time works better. By the end of the week my tremor has nearly disappeared, however my ability to read maps and follow more than two directions in a row is compromised. I didn't ride yesterday. Hope I can today if we get through this huge rainstorm. I'm thankful all of our group made it safely. Kudos to all seven of our PFP team who have PD and made the ride.
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08-04-2016, 10:43 PM | #374 | ||
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Congratulations, Nan, on completing such an epic ride. I'm slowly increasing my distance but nowhere near that mileage. I seem to be doing enough to make a difference, however. After I bike I find it easier to get moving when I get up at night, and my meds last a little longer
Did the other people with PD on the ride also notice an improvement in their symptoms? |
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08-05-2016, 02:24 PM | #375 | ||
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That's an excellent question, Wendy. I don't have an answer. Five of the other 6 PD riders were young onset. 3 men, 4 women, 2 men with DBS, no women with DBS. One man and I rode solo; everyone else on tandems. All of us wee repeat riders. Keeping the cadence and riding as long as you can, even breaking your ride into segments is fine. I encourage people to set their own goals and rewards, not try to replicate someone else. It sounds like you're doing great.
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09-29-2016, 05:38 PM | #376 | ||
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I've been riding for several months, partly on my old mountain bike on a stand with a motor assist my husband rigged up and partly outside. I thought it was helping - I cut my meds back a wee bit and it was easier to move when I got up at night.
Then I went on a three week holiday where I couldn't t bike and oh my gosh,what a difference! I could hardly get moving at night,and I had to put my meds a little bit higher than before biking and put up with the resulting dyskinesia. You should have seen me the one night we camped. We drove way up north past the arctic circle and went prepared for possibly no hotels. I had a mummy bag because we thought that would keep me warm,but with both arms tucked inside I literally couldn't turn over. You should have seen the 2:00 am production whe I had to pee -first of all I had to somehow get out of the sleeping bag, then get out of the tent, then try not to think of bears as I looked for the nearest tree, then reverse the whole process! I've been home almost a week and am hugely relieved that the bike seems to be doing its magic again. |
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"Thanks for this!" says: | jeffreyn (09-29-2016), soccertese (09-30-2016) |
09-29-2016, 09:56 PM | #377 | ||
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That is hilarious description of your trip to the Arctic Circle. I can only imagine trying to get out of the sleeping bag in the tent and not pee in the interim. I am also in a sleeping bag right now, in Bozeman Montana, but I'm not having the difficulties you're having getting out to go in the night because I'm in a camper van.
You remind me of the efforts that I made to make it easier for myself when we climbed Mount Kilimanjaro. I bought a gadget that was supposed to help women p like a man. However you don't have to use your imagination too much to realize what would happen when a woman with Parkinson's tremors tried to use the gadget. Tried it once and failing miserably, gave it away. Glad to hear the biking helps so much. |
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10-08-2016, 10:41 PM | #378 | ||
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Nan, I was looking at Pubmed for any new research on cycling, and saw Dr. Alberts plan for a 100 subject study that was supposed to end in Sept. 2016. Do you know what's happened with that?
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10-09-2016, 06:14 PM | #379 | ||
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Quote:
My biggest challenge at the moment is a 10 month 75# puppy. Great Pyrenees foster dog who is staying with us after leg surgery, so he needs to be kept quiet for 8 weeks. Yes, Puppy. Yes, 75#. I'm working on how to fall without hurting myself, but he is a wonderful dog. |
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10-27-2016, 08:45 PM | #380 | ||
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FYI. I'm talking at the YMCA in Boise Idaho tomorrow at 3 PM. Everyone is welcome to come. It's October 28 at 3 PM at the YMCA in Boise. Sorry for the late notice.
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