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  #61  
Old 06-26-2017, 10:48 AM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
Posts: 458
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TM, I'm so happy that you have a state of the art rehab center! I feel like you have been sent on a pioneer FES mission and you will come back, stronger and report to us how it all works. I'm sorry it took a health crisis to get you there, but I'm extremely excited for you to have access to all the equipment. Have faith in your body's ability to get stronger. I'm sending you positive thoughts and prayers. Suebee
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  #62  
Old 06-28-2017, 10:34 PM
Veronica Veronica is offline
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Join Date: Mar 2013
Location: Columbia County, NY
Posts: 262
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Larry, are you feeling like a mountain goat these days? I can envision you climbing, grinning (well, maybe internally at least…while grimacing on the outside…) But grimacing while climbing always was a sign to me that I was meeting the challenge of the climb… It has to hurt, and hurt bad to make it count. Sounds like you are doing that for sure, and after the health issues you dealt with recently, you must be pretty damn happy with yourself. As you should feel! Keep reporting the climbs and the swooping downhills… I love it!


Walker: Yikes…. 18 runs/ 100 miles in May….. very impressive. Actually my jaw dropped when I read that. Makes you feel good after, huh??


Susannah…. I find myself smiling when I think of your plans for the solitary month’s hike. I bet you are so happy! Sounds like heaven. A real celebration that this damn disease doesn’t have to beat us down. I’ve done some solitary overnight hikes in my distant past, and it was very soul satisfying.

Teena Marie: I don’t have to say “Stay Tough" to you! You’ve got this, I think. As Suebee mentioned, it really is fabulous that you have connected with such a phenomenal rehab clinic. I continue to send you my best thoughts and am happy that you are hopeful, and already see progress/improvement.


Something that Teena Marie mentioned triggered my post this evening, besides wanting to congratulate my buddies here. You said that you are looking at all activities as part of your rehab. I feel that since I moved to this house, much of the day when I am home based, and the weather is good is incorporating my MS exercises into what I am doing around here, so basically my entire day is a PT event.


I have been working on establishing some perennial gardens, and it is involving up and down my stairs on the deck,( stairs are really hard for me…) hauling plants, bags of soil and now mulch,( works on my balance walking without a cane as I need to carry these with two hands..) digging while kneeling, and then of course having to get up again, over and over. I thought of the farmers on the forum who talk about crawling around on the soil…been doing that. I haven’t gotten out on the trike as much as I would like, nor have I been really working on training to do that hike, but I figured I can either beat myself up about that, or just acknowledge that right now, doing my gardens is my priority, and my total delight. SO, it is helping me to keep from feeling guilt ridden by going the extra “mile”up and down the stairs, haul just one more bag, walk around my yard up and down my little hills before my legs tire, then plop down and work on engaging my core when kneeling and reaching, blah, blah, blah. I really feel stronger. I am continuing yoga, and am enjoying it, and when I have been on the trike it has been great fun, and I have been pushing my effort just for the joy of it. And tomorrow is yoga in the am,( I missed the Monday class and am determined to get one class in weekly..) then it is a “Trike Ride First/ Garden in the late afternoon" Day and I am really looking forward to it….My ride might just be a 10 miler, but it will happen, and I will feel happy. Have a lot of weeding and mulch laying down to do, which allows my body to rest alittle…no digging. Off from work until next Wednesday so Friday I can Recover…


Love you guys, and love reading how we all, in our own different ways are moving and motivating each other…..
__________________
Be thankful. Dream Big. Never Give Up.
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  #63  
Old 06-30-2017, 08:45 AM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
Posts: 939
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What an incredible group!

Suebee, what Veronica said about gardening reminded me, getting on your knees and working with your hands can really get into the core. I removed about 500 screws from a wood deck a year or two ago, what a killer core workout! How are the exercises going anyway?

TM, you must be in heaven with all of that high tech gear to work with! I've often wondered if it might be possible to relearn a proper gait. I'm sure I've forgotten what it feels like. Interesting stuff!

Susannah, sorry the rim to rim fell through but the CDT is a hell of a replacement, I am envious. Stay safe, I'd love to hear about it when you get back.

Veronica, I knew you were busy but your seemingly boundless energy just blows me away! And yes, I am trying to climb something twice a week and doing pretty well at it too! Here's the latest news.

I dropped by the Raw Hines pre-MS 150 ride party the other day even though I haven't done the ride for the last two years. Everyone I knew on the team seemed to make a point of coming over and talking for a while. I couldn't have felt more welcomed and was having a great time catching up with all of them. Eventually the team captain wandered by, said how happy she was I had dropped in and gave me a big hug, even though she already knew I wasn't riding this year. Well, I was so overwhelmed that in a fit of extatic exuberance I exclaimed that I would definately ride again next year. Oops!

Two days later I went on a ride with the Bullet and an old college buddy. This was the first ride I've done with the Bullet this year. As we started off, I told them the story about dropping in on the team party, how friendly everyone was and committing to next year's ride. She replied that she was planning to do the ride next year with or without me anyway because she needed to get back on her bike, count her in! My old college buddy enthusiastically said he's in too.

A couple more days and I'm meeting Leggs in the mountains for our weekly mountain climbing date. I told her the story and she immediately exclaimed, "I want in!"

On the way up the mountain I was thinking about my MS and it suddenly occurred to me that next year would mark the 20th anniversary of my initial diagnosis. I told Leggs that when we stopped for a break at the top. She said "Hmmm, we'll have to do something special. Century!" The only correct response was "Yeah."

So there you have it, the Colorado MS 150 including the century next year. I have two daughters who will also be living here next year and although they don't know it yet, they're in too, at the risk of being disowned if they decline.

Later all, keep up the good work,

Larry
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  #64  
Old 07-02-2017, 05:25 PM
Suebee Suebee is offline
MS Whisperer
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 458
Smile canoe trip!

Hi, I wanted to share with you all my glorious canoe trip i had this morning. I have been missing being outside active and acted on a wish to kayak with my husband and 2 girls. It started out rocky - We set out, got lost, had difficulty finding the row house, had to walk farther than i expected, and I fell, bloodied my knee, and kayaks were rented out. So we got 2 tandum canoes instead, and I dont know whether the stars were aligned, but we were definately rewarded for our efforts. I was
able to paddle for a short 1 hr excursion, my arms felt strong and i kept expecting my poor endurance to kick in, but it didnt. It was fantastic. We were all so joyful. MS wasnt invited. I think the high canoe seat and my bulky life vest supported my core. Getting back on dock, however, I had my weak core and legs back. But I got an incredible morning canoing on lake. I felt awesome! I hope you all have such a great day as I had.
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  #65  
Old 07-05-2017, 11:38 AM
walkerhe09 walkerhe09 is offline
Optimistic Misfit
 
Join Date: Jul 2010
Location: Newtown Square, PA
Posts: 17
Default June Results

I just love reading about everyone's escapades - everyone is doing such amazing things. Keep up the good work.
Thanks for all of the words of encouragement as well. I really appreciate them.
For the month of June - I ran 19 times for a total of 104.6 miles - my pace per mile dropped 16 seconds per mile compared to May so I am making some progress. On to July....

Hope everyone is enjoying their summer.

Howard
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  #66  
Old 07-06-2017, 12:01 PM
garyp garyp is offline
MS Sage
 
Join Date: Oct 2010
Posts: 181
Default My two physical goals for this year...

The first was to run a marathon - did that in January in a cold temperature. Took 7 hours...but who cared how long it took, just wanted to finish.

Second goal - completing the Pikes Peak Ascent half marathon in August. Has cutoff times you must make at 7.6 miles and then again at about 10 miles before reaching the summit of Pikes Peak. Physically I can do this. The wild card will be the temperature/dew point on the day of the event. Will hopefully have friends who live in CO who will be present at refreshment stations to replace the cooling packs in my Coolture cooling vest.
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  #67  
Old 07-06-2017, 02:38 PM
RunnerGirlEllie RunnerGirlEllie is offline
Junior Optimistic Misfit
 
Join Date: Jul 2017
Posts: 1
Default Hello!

Hi all!!! I haven't been here in way way to long. I had to rejoin the group with a new account the Old one would not send an email to change my password. Anyway I am now in training for the Munich Marathon. This year has been a bit of a transition for me. In June I embarked on my third BikeMS century ride. I ended up riding 100 miles on Saturday and for the first time rode 30 miles on Sunday. As I have switched over to marathon training I have been struggling with getting a bit of tunnel vision and my gait is that of a drink sailor mostly after I cross the finish line. I have to grab onto the finish chute so I don't stagger into somebody. Of course this goes away after I cool down.I have decided not to let MS change what I want to do.
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  #68  
Old 07-10-2017, 09:02 PM
RonRuns RonRuns is offline
Optimistic Misfit
 
Join Date: Mar 2016
Location: Montréal, Québec
Posts: 25
Smile

Hi folks,

Here's an update on how things are going so far on the 2017 calendar.

Started the year well after I recovered from the last xmas relapse. I was not ready to do the winter run so my season started with the 10k run in april. It went well although slower than last year. Same for a regular half marathon in april: did well but a bit slower.

I cancelled most training and races planned in May because of another relapse. June was about cramming in some training for yesterday's race: the run portion of an extreme Ironman length triathlon (we split it in a team). Basically it's a very hilly trail and road marathon that finishes on top of a mountain. Total ascent 4000 feet.

DONE!!!

The road portions went very well where I was even passing runners. I struggled quite a bit in the technical trail sections. I didn't suffer from the usual blurry vision (that's great) but it feels like the visual processing speed that is very slow: the time it takes to process the terrain and tell my feet where to go is way too slow to trust myself running on trails with rocks, roots, mud, etc. But that's ok. I'm very glad I'm done especially getting back to normal after the last relapse that affected my legs.
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  #69  
Old 07-11-2017, 05:59 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
Posts: 458
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Ron, that is great that you are out there running! I'm glad to hear about your accomplishments. Thanks for posting it. You can improve processing speed with practice!
Your OT or PT can give you exercises to improve visual processing of images or movement. But doing Wii games that require motor control or balance will be similar. As is a video arcade shooting gallery. If your vestibular function is off, there are also exercises to "desensitize" it. The brain is amazingly able to rewire. Keep running!
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  #70  
Old 07-12-2017, 12:26 PM
RonRuns RonRuns is offline
Optimistic Misfit
 
Join Date: Mar 2016
Location: Montréal, Québec
Posts: 25
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Thanks Sue. Great advice regarding training.

The vision has been better this year than before. My vision was often blurry especially on runs when my body heats up. I think the blurriness was just that the image signals were coming way too slow. It felt like if I was running and getting a flickering or choppy image. Instead of getting 24 or 30 frames per second, I felt I was getting only 6. On Sunday, even if I was hot, I didn't feel the blurriness but was not confident enough to run on technical trails where I have to avoid rocks and roots. I'll try to look for exercises as you mention (I don't have a Wii) or see if I can consult with a specialized PT or OT.
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