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  #71  
Old 10-08-2018, 08:23 AM
Marinadca Marinadca is offline
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Join Date: Apr 2010
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Hey All - it has been forever. To be honest I have not been a very active MSer and this has really had a pretty negative mental effect of me so I have been avoiding many of my usual places.

I feel like I am turning a bit of a corner, and my improvements seem to coming a lot more readily. (I hope). So I am OFF the crutches and any kind of walking aid. I am walking my "short" circuit -1.3 miles at a slower pace then I am used to but its happening. I am still using an upright gym style bike - I am up to 20 minutes with the resistance up a bit. So all in all, things are getting there but painfully slowly.

I had a bit of drama with my PT, a few times during my rehab she seemed to have a basic misunderstanding of how my MS effected my gait/recovery. Long story short, I am at a different (out of network so much more expensive to me, but of well) clinic, it is more geared to athletes (which I am not) but after 2 sessions there so far I am sure it will be the right place.

Veronica - I am so pleased to hear you are doing BikeMS NYC!!!!!! I am so happy for you that you have gotten some things back, its beyond awesome.

Larry - I wish I knew why walking was so tiring! My max is around 3 miles (well before the surgery) and my legs would feel more tired then riding 50 miles! I hope you are feeling better and back to yoga soon.

Teeny - glad to see that you are seeing small but consistent gains. Going back inside it always a trial!
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  #72  
Old 10-14-2018, 08:05 PM
penkalet penkalet is online now
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Join Date: Apr 2010
Posts: 80
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Larry, I am so glad that you are riding well again and that your walking is great.
Veronica, I am with you for the E trike, I love it.
Yesterday, I didnít feel like going ride at all, so I tricked my self and told me just to go for a short trip with lot of power just for fun. So I went and after 20mn of easy riding I felt pretty good and ended up having a great 2 hours ride.
Otherwise I do my routine, yoga and meditation and walking 20mn morning and 10mn on the evening but with concentration telling my bad leg what to do, push up your hill, up your knee kick o and hill down! I have done this for a year and I see some improvement. Thank also to Ocrevus that I feel has slow pretty good that monster or at list the inflammation part of it.
Any one as good experience with Ocrevus or Rixitan.?
The best to all you. Alain
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  #73  
Old 10-16-2018, 03:55 PM
cl3me cl3me is online now
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Join Date: Mar 2012
Location: Winnipeg, Manitoba, Canada
Posts: 50
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Great to check-in and see what everyone up to!...

I am realizing that my activity is very seasonally related...spring and summer was biking and kayaking with a bit of horse back riding, but soon as fall hit it has all been about the horseback riding and enjoying the fall colors. It has been a cold wet fall but still managed to hit the trails.

I ended up doing some solo kayaking this year, and realized that while I have PFD and won't drown, I would like to be a stronger swimmer in case of problems out on the river/lake...so started swimming lessons as I never did learn how to front crawl/freestyle properly as a kid. I am enjoying it more than I thought I would and don't find it as problematic as gym workouts for overheating and overall sense of fatigue. I am still trying to get the rhythm of the breathing right for front crawl but can back crawl like a champ. That and yoga classes at the gym is keeping me busy.

My MS has been quiet, I did have some issues with mild left hand tremor that comes and goes, mostly shows up day after a big exertion like a kayak trip, but subsides again the next day. Otherwise relapse free/no new lesion on MRI since I started 2.5yrs ago, remain JCV negative. Cross fingers.
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  #74  
Old 10-18-2018, 01:15 PM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
Posts: 880
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Well, I have managed to get to the Y, several times. Cold wet weather and our first snow helped. I am lifting weights, doing the elliptical and up to 20 min on the sideways elliptical which is such a major torture device!

AND, I accidentally came across a walking coach!!!! She's a yoga teacher with a keen interest in physiology and kinetics and she's given me some not so gentle pointers. She practically beat me into keeping my butt back and pushing off with my weak leg slightly. Granted, there may have been a few glasses of wine involved, but, both seem to help the foot to kick forward and the knee to come up in a more normal gait. Still working on controlling the circum-ambulation but can sometimes do it for at least a few steps! Like you say Alain, it takes a lot of concentration.

TM, I do believe the anecdotal reports on the efficacy of some of the cannibinoids with respect to pain and spasticity relief. My concern is more with a lack of research concerning potentially harmful side effects. Hopefully now that it's legal in Canada some of this shortfall can be addressed. Glad to hear you're seeing improvements.

Marina, also happy to hear you're seeing improvement too! Hopefully you're on track to get in shape for next year's season.

Veronica, I'm signed up for ski bike lessons at Winter Park at the end of November. Apparently Winter Park has ski bikes to rent too, different than I'll be learning on, but they require you know how to use one before they'll rent one to you. I don't know what kind they are yet but I'll let you know when I find out.

Cl3me, always love to hear your updates. You have such an interesting array of activities!

And Dave, thanks for keeping us going!

Later all,

Larry

Last edited by AMFADVENTURES; 10-19-2018 at 10:57 PM.
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