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  #71  
Old 10-08-2018, 08:23 AM
Marinadca Marinadca is offline
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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 offline
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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 didn’t 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 offline
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Join Date: Mar 2012
Location: Winnipeg, Manitoba, Canada
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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
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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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  #75  
Old 10-24-2018, 02:43 PM
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ActiveMSers ActiveMSers is offline
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Larry and gang, thanks for holding down the fort for me while I've been off on vacation! The afternoon after I returned from Lisbon, Portugal, running on three hours of sleep over nearly two days, I got on my bike for an hour ride, cranking all the way. It felt great!

I noticed on my trip that fatigue started to roll if I didn't work out at least every few days. Thank goodness the ship had at least on piece of equipment in their gym that I could use.

Getting back into the swing of things, but still jet lagged, so next week should be closer to normal.
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  #76  
Old 10-25-2018, 04:38 PM
Veronica Veronica is offline
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Sounds like a great trip, Dave. And I agree with your comment about fatigue. Often if I feel like a slug, I realize it is during a period when I have slacked off from my usual routine, feel sluggish, don’t want to do anything…blah, blah, blah. But when I just get myself to start something, I get the energy going again rather quickly. This actually was the same scenario preMS…of course the fatigue was of a much less intensity, but when I would feel like a lump and make myself go for a bike ride, walk, or a run, I just got myself out of it. Physically and mentally…


My big news is that BikeMS NYC is Mission Accomplished… I am so happy that I got the electric assist. It was this past Sunday and the ride was just fun. And having trained on all these serious hills around here served me well. The terrain around Manhattan is nothing like Columbia County, and I happily found that I could use a much lower level of assist, and only occasionally did I pulse the throttle, where around here I have to do that all the time, with the heaviest level of assist set.


There was NO drama on this Ride! NO drama of asking constantly of my riding buddies “ Is the bus back there?” And NO drama of “ How am I gonna beat the bus”.. “ DID I beat the bus?”… “ How am I handling it that the bus got me??” One of my friends commented, kiddingly that he missed the drama... Not me!


Well, there actually was drama…the weather.. When I got up at 4am and knew that it had rained on and off during the night, and at that moment it was only 47 degrees, I greeted the day with a mumble of “Whose stupid idea was this???” And when I got to the start line at 6am it was 45 degrees , still dropping and the winds continually whipped up to 20-22mph during the entire ride.


We’ve had wind on many rides, but this was non stop…and a very icy wind. I had on my wool ski socks, a ski baselayer, and two other layers underneath a wind breaker. Gloves, and I wish I had a nose warmer… And an hour after finishing when we were inside we were all commenting on how cold we still were.


But I loved the ride….just felt so good to get something back. Where in the past we made a big deal of my finishing, with big whooping it up, my getting teary…videos of us being stupid, etc. etc., this time I just rode in with a very calm content Cheshire Cat smile on my face! And no photos of the finish since my friend was just getting off his bike to get his camera out, and I was on his tail, so I rode in behind his back without him even seeing me. I liked it this way...just part of the pack.

And since I didn’t over stress my legs, my knee did not cave in, I was able to dismount totally independently, and could actually walk around the finish line event area rather comfortably with just my normal gait issues.


Larry, so happy to hear you are gonna be back on the slopes! In a few weeks, huh? Well, I will be very interested in what equipment you settle into…..

Marina…you’re getting there, but boy, it has been a long haul for you, hasn’t it!! Hang in there, it’ll be a memory soon enough…

Teena Marie…. Always happy to hear of your progress. I totally empathize with you about now having to go inside….. grrrr….. this transition is rough, isn’t it??

Cl3me, love that you decided to improve your swimming! Nice adding something new to the routine.


Happy Fall, all!
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  #77  
Old 10-31-2018, 12:42 PM
AMFADVENTURES AMFADVENTURES is offline
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Veronica, congratulations on your latest MS ride!

I can recall one of your first posts on these forums concerning you and a friend riding Truchas in New Mexico. You referred to yourselves then and now as "biker chicks". Well, in my mind, you've elevated your position to something like "Biker Chick Extrordinair." Anyone who can get up at 4 am on a rainy night to start a bike ride in 45 degree Temps and 20 mph winds is ONE HELL OF AN EXTRORDINAIRY BIKE RIDER! Nicely done Ronnie!

With great admiration,
Larry
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  #78  
Old 11-05-2018, 12:17 PM
Veronica Veronica is offline
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Well Larry, you made me blush with your accolades! But I thank you for that...coming from the BikeMeister it means a lot....

Had my last ride of the season yesterday. I drove me and my trike over to my bike shop an hour away, did a fun hour ride on the trail right next to the shop, then had them switch my rear wheel out to the wheel without the motor. This way I can bring the trike into the house and get it on my trainer for the winter. SO much lighter without it!

One exercise area that I know I continue to wax and wane in, is working in my walking. Larry, your post on the walking coach you found got me realizing how I have gotten out of working on mine terribly. So, with the end of my riding season, I am trying to get myself back on track with this. I’ve got the added time now, since riding, and for the most part, gardening is over. Now I just have to do it! Which is why in part that I am posting this here...gotta make myself accountable..... Marina, I so agree with you about the legs feeling more tired walking a short distance than after a long bike ride......

Always so happy to have my forum buddies!
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  #79  
Old 11-11-2018, 10:17 AM
AMFADVENTURES AMFADVENTURES is offline
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Veronica, well, I was impressed because of the girls I ride with, the Bullet won't leave the house unless it's at least 50 deg. out and Legs won't go if the wind's up so you're tougher than either of them.

I rode 45 miles yesterday, first time I've been out in a couple of weeks. Boy was I sore that evening. Other than that, I've been hitting the weight room at least every 5 days, walking two or three times a week and doing yoga - and gaining a lot of weight lately. I hope the weight gain is related to the weight lifting.

The walking is going just ok. I definitely prefer walking on hard pack dirt or gravel because when I drag a toe it's less likely to trip me. Also I can try to vary my walking speed a little more. It's remarkable how much muscle memory we loose from even a little pain or weakness, but on occasion I've noticed just the reminder of that walking muscle memory, it's kind of like "oh yeah, that's what it felt like to walk normally." That feeling doesn't last more than a couple of steps but I'm hoping it's a start! It takes a hell of a lot of concentration and that alone is fatiguing.

Carry on all,
Larry.
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  #80  
Old 11-12-2018, 08:13 PM
penkalet penkalet is offline
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Veronica, this is amazing! Just the logistic for that ride will have me, cancel it.
Larry as always very impressive! And yes, telling mentality step by step that bad leg what to do, as give me the best result.
For me, “great week” considering that I had a hip replacement last Monday! (the one leg NOT affected by ms and that got damaged long time ago by a stupid accident. )
I am back home recovering after 2 nights at the hospital. Except for vomiting a full day and not be able to empty my bladder, the surgery was a success and I am already “walking” 3 times a day 15 minutes with a walker.
I was worry to have some flares up from the stress on the body but so far so good, except for tingling, fatigue and laziness in the legs.
I hope I can resume my exercises routine in 4 to 6 weeks.
Let’s stay fit this winter as much we can and try to survive those coming holly days.
Best wishes.
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