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Old 10-08-2018, 08:23 AM
Marinadca Marinadca is offline
MS Gladiator
Join Date: Apr 2010
Posts: 320

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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Old 10-14-2018, 08:05 PM
penkalet penkalet is offline
Join Date: Apr 2010
Posts: 80

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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Old Yesterday, 03:55 PM
cl3me cl3me is online now
Join Date: Mar 2012
Location: Winnipeg, Manitoba, Canada
Posts: 50

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/ 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.
Callenge life before life challenges you - from inside collar of my "Bike Off More Than You Chew" bike jersey
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