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MSers in Training 2017

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  • #76
    To long I didn't post! What wrong with me?
    I read all you inspiring story and hard work and
    I am very happy to see that every one is doing great.
    For me, I still ride my trike 2/3 time a week for couple hours and 1000/ 2000 feet elevation ( I have power assist) that I love it, but I miss riding my bike. It is just a different feeling, on the bike it is about the fun to push yourself and on the trike it is more about enjoying the ride and I can stop anywhere without feeling unbalanced, the down hill is pretty scary on the small curvy road.
    Every day I don't ride I do MS and core exercises . Also twice every day I do my yoga and meditation.
    I guess I am a exercise freak too. And I believe that it as help me to slow the MS and aging going down hill. ( I turn 70 after all!)
    I will have my first Ocrevus dose next week so will see if it mess up my routine.
    Have a great week.


    • #77
      Happy Friday everyone: Just wanted to give an update on my quest to get hiking. My brother and sister in law and I went out for hikes for two days when they were visiting last week, and I have to say it was heaven. My furthest venture was about a little over ½ mile round trip, which I am more than satisfied with….in fact, I am elated! The first trail was a nice combination of just flat wide trail with grass, then a very short, but steep/narrow/double fall line climb over rocks and tree roots.

      My sister in law went up first ( for them it was nothing much…) but she told me later that she really thought I would decide not to try. But I just decided to take it like the challenge it was, and realized that my best option was to get on my knees and “scramble” along. With my brother behind me, I was able to have him pick up my right foot for me and place it on the rock that I wanted, since at that angle, I didn’t have any brain/nerve/muscle connection to do so myself! It worked great….used my Urban Poling “Activator” poles with the rubber tip on for much of this, but switched to the metal tip when I needed to. They give me great stability. We then walked a bit and found a very pretty little lake just in the middle of nowhere, and I remembered how it feels to be a hiker. They carried a camp chair for me, and I used it often, and it worked so well. Coming back down that challenge area, I was able to sidestep with Barb up and behind me so I could lean on her forearm as needed.
      On the second day out, we tried the Bash Bish Falls trail, which I am now so committed to SOME day get to see the falls. When I tried this myself in the spring, I got to the second bench , but with them I made it to the third. When I was at the second bench, they went ahead and counted how many steps to No. 3 which really helped me with confidence. We didn’t bring a chair with us since the benches were there, but as I rested at 3, they went on to see the falls, and came back saying that there were no more benches, or even big rocks they thought I could use. Just as well, since I knew that I was probably at the turn around point anyway.

      So I learned that we will need to bring a lightweight camp chair for my venturing past No. 3…. Still along way off for me, since round trip is 1.5 miles, but I’ve at least started this grand quest.

      From there we drove up to Mount Everett. The Appalachian Trail comes thru here, but there is also a separate trail up to the summit. We didn’t have great info on distances, and hikers coming down just said “ It’s a short distance just a few switchbacks”. And thunderstorms were threatening all around the area.

      We waited for thunder to not sound for 10 minutes and gave it a shot. I got to the first switchback, then when I rounded it, saw the very straight uphill grade….just as it started to sprinkle a bit. Even if it wasn’t starting to rain, I needed to turn around as I knew that distance was “ a tree too far” so to speak! And if it started to pour, or lightning, I was a standing duck with those poles and not being able to move quickly.

      So I happily went back down as they ran up to see the summit. In the parking lot, I had a wonderful time talking to a guy who has been a Through hiker for the AT, and I just loved talking hiking with him. Just brought me back to that community, and reminded me of some of the “epic” hikes I had done in the past.

      Apart from this, I have been getting to yoga weekly , and am now comfortably incorporating some of the poses into my daily routine. Cycling is still slow, but so very enjoyable….just need to get out there more than the just once weekly ride of the past month or more….. I think I am at the point of not mentioning my slowness anymore….PROGRESS!!

      And my gardening has continued to help me work on core strengthening, and just overall strength of my arms and legs in hauling around stuff and going up and down the deck stairs…… Of course, I still do my regular stretching and balance exercises at home….

      AND, I think my shoulder is healed enough to get back into a little paddling. My paddling friends and I will meet the end of August for me to give it a try. A nice kayak paddle in a calm lake would so delight me.

      So I think I will work on being the best “Jack (Jill) of all sports and Master of None”……. Fine with me!
      Be thankful. Dream Big. Never Give Up.


      • #78
        It is really inspiring to read about everyone's fitness. I've been limiting my outdoor activity to mornings when it's cooler. My favorite walk is to a small lake near my home which gets me 3 miles round trip.

        Yoga has been my savior in recent months. I don't know how I'd get going in the morning without it. When I'm just too stiff and achy to sleep at night I can do some yoga and things settle down beautifully.

        Veronica I have fond memories of backpacking on the AT. I grew up on the east coast and found a love of the outdoors on the AT. There's nothing sweeter than walking a trail and soaking in the surroundings.

        penkalet your dedication to fitness is encouraging and just the fact that you still get out on your trike is laudable.

        My opinion ... everything counts if you're moving!


        My Two Numb Feet - An MS Diary


        • #79
          For folks who follow ActiveMSers on Facebook ( this is old news, but I finally, FINALLY broke the 20 mile mark on my arm trike last weekend.

          Final Stats:
          21 miles
          2,100 calories burned
          1:48 in the cardio zone
          4 hours in the "saddle"
          Average HR: 111*
          Total Ride: 4:45

          *Higher, but did not pause HR monitor during 45 min lunch, since I probably would have forgotten to turn it on like a dork.

          I wasn't trying to set a distance PR, but things cooperated. The weather wasn't too hot (mid/upper 80s), we stopped at the 10 mi mark for refueling (sandwich and an icy drink, uh, and a churro), and a neighbor was holding an open house (an excuse to go just a little farther).

          The lunch stop worked out better than expected. Even though we ate outside, I spent time indoors while the food was being prepared. And I took off my cooling vest to let it recharge a bit in the A/C temps. And then right before we left I made a pit stop. Turns out their bathroom was 5-10 colder than the eatery, which felt great.

          All in all a great ride, and pretty easy. I don't know when/if I'll break the 21 mile mark, but that's a-okay with me.

          Love the other motivating stories here!!!
          Dave Bexfield


          • #80
            That's awesome news Dave!! I know you have been wanting to break that 20 mile mark for some time.

            As for me - I am off the bike and everything else for the past 4 days and will be for another 2-3 days because life is happening. I am hoping to get a long ride in on Saturday and Sunday I am not sure, as the trail that I usually ride on will be the site of a hosted century so I will need to either go elsewhere or figure out a route around it. My "hilly" ride is on Labor Day. I was planning on riding the 70 miles but with so much time off the bike I am angsty about it so we shall see.


            • #81
              Veronica, love that you're hiking! Between you, Susanna and the Arteacher I am green with envy.

              And Dave, congrats on breaking through the 20 mile wall! I hoped it was just a matter of time, you are after all, a professional at breaking through walls.

              Alain, Ocrevus, hope it goes well.

              Marina, wishing you well on the "Hilly", maybe you'll get a nice tail wind!

              Still plugging along here, riding 3 to 5 days a week, yoga twice a week, lifting weights once in a while. I am also trying to do more walking, shooting for twice a week before yoga. The yoga noticeably relaxes the muscles that stiffen up from the walking, the combination goes together very well.

              I appear to have hit my own wall here, I've done half a dozen rides of 70 to 75 miles, sometimes limping home but sometimes finishing feeling pretty good. Still I can't seem to break the 80 mile barrier. It was pointed out to me that I needed to eat more on the rides and that has helped, if not to go further, at least to feel better afterwards. Of course there are some hills in these rides since I am trying to emulate the Tour de Tucson. The ride is still 2 and 1/2 months away so not time to panic yet, but I would like to get reasonably comfortable with something close to 100 miles. After all, I wouldn't want anyone to think I'm struggling (like my sister or my daughter). The walking I'm doing is to prepare me for getting across the two arroyo's, likely where I'll struggle the most.

              You all are quite an amazing group, keep it up.



              • #82
                No updates on training in a month? I am going to assume that we are all working out so diligently that none of us have time to type a one sentence update. I include myself in that BTW.

                But I have a touch of time now. I just flatted a tire on my trike after pulling off on to the shoulder to take a pic. I knew it instantly when I heard this hissing noise. Total suck. At least I didn't just get my bike tuned days ago so that it was working like a dream to ride in perfect fall New Mexico weather. Oh wait, YES I DID.

                I have been getting in lots of great rides, and with cooler weather it has felt fantastic. I just love getting outdoors.

                How 'bout y'all? One sentence is fine. AMF/Larry, feel free to write two.
                Dave Bexfield


                • #83
                  Chaos Reigns

                  Deepest apologies Dave and all, for my recent lack of communication. Chaos has decended upon my household limiting my leisure time severely. Allow me to explain.

                  I have two daughters, both have returned to the nest. One, a single mother, brought her three children with her. She is going back to school for another degree and will be here for the duration. The other, a single young professional lady, will probably move out when she can find a place. Meanwhile, she is camped out in my office and, in her spare time, has managed to find a dog to occupy the kids. So, we have grown from a quiet, elderly, retired family of two to a raucous chaotic family of seven, including two very hungry teenagers and a dog!

                  In between trips to various grocery stores, different schools, football practice or baseball practice, I am still getting 3 or 4 bike rides in each week. I am also still doing yoga twice per week and walking when I can. I did manage to break the 80 mile barrier with an 85 mile ride almost 2 weeks ago. I have consolidated that achievement with 70 mile rides since. Next month I will try for something over 90 miles. The cycling is going well and I am feeling the best I have in a long time.

                  As a person with MS, I was initially quite concerned about what effect the pandemonium a couple of boomerang babies and their offspring might have on my condition. But one day, as I watched it all unfold in front of me, I found myself quietly laughing. It occurred to me at that moment, that I was actually enjoying the stimulation the chaos brought. I might describe it as a reawakening of part of my brain which had long been asleep as a result of invariable daily routine. I know it is a fools erand to try to control total chaos but, as much as I loved my routine, I am finding that I love even more, the mental stimulation afforded by trying to steer the chaos in a positive direction.

                  What I am learning from this episode is that physical activity is not the only way to shake up the MS addled brain. Many of the challenges brought on by life's changes might also have a positive effect if approached in a constructive way. Having said that though, check back with me in 6 months to see if I feel the same way.

                  Last edited by AMFADVENTURES; 09-29-2017, 04:33 PM.


                  • #84
                    Ok, ok Dave…. You guilted me out….. August did seem to fly by….all good things…

                    But first I just have to say to Larry about your post…. “quiet, elderly …” sure doesn’t sound like the Larry we know, does it?? That makes you sound as if you sit inside all day doing crossword puzzles while lounging in your recliner…. We know differently…
                    Now, what you said about the Happy Chaos is something that I have felt ( but never thought it all through as you did) whenever I visit one of my brothers with his grown daughters, their significant others, babies and dogs, and the very vocal and numerous in-laws. Usually when I first arrive, I feel as if I am finding the right time to jump into double dutch, but not the jump roping, but the verbal back and forth with five things happening at the same time. But once I’m in it, like double dutch, I just keep the rhythm of it, and I feel as if I am keeping up with the flow . It’s a very satisfying feeling for me. Yup, it has to be a wonderful brain exercise.

                    Ok, so my update: Concerning my hiking endeavors, nothing much to report here except I continue to find time to walk uneven terrain, and take as many grassy or dirt hills as I can. Researched light weight camp chairs thru our website here, and came across Dave’s post from a few years back on the REI camp chair… and got it! The price has gone up a little (still very inexpensive…) but that is the only negative…WOW….it is SO light…1 lb. something. I just have to swap out the strap so I can crossbody it. Then I will practice carrying it when I walk around my hilly yard, and I think it will be great for the trail…..which will be happening this month now that I have a bit more time, and the weather has cooled. And I have my chair…

                    My cycling continues to delight me….just been enjoying the rides…..found an easy way to stop getting nuts about speed by not replacing my computer’s battery, AND no longer using Strava… Now I have no idea what my numbers are, and I am a free woman. Wahoo.

                    Now, that being said, I only have been getting in rides topping out at 10-13 miles as it takes me so long to do this, and most of these have been solitary rides. Been doing a lot of talking with my long time biking buddies and thinking things out, and have come to the decision to invest in the electric assist next Spring.

                    I realize that while I am happy with what I am doing now, it really limits my total enjoyment of riding with my DF buddies. I have a strong ego I think, but when I saw one of my friends WALKING behind me as I climbed a little hill, it was really hard to take. From all my years of bicycling, I have a memory of a speed and cadence that I am most happy and satisfied at, and this has been unattainable on my own. And I just miss it too much . Plus I long for the chatter and social aspect of riding with friends at the same level ( speed, not height!! Lol ) I get a taste of this when starting on a decent, but then I just let it rip with the Cattrike and blow past them as I am so thrilled to be going fast again. Nutty, huh?

                    And Alain, your mentioning your electric assist and why you use it also so encouraged me to stop being such a “bike snob” and just make the investment. I really want to get back to some longer rides….the roads where I live now are just so conductive to riding, but at my rate of motion right now, it is difficult for a friend to ride with me as they would be walking so much of it with the rolling hills. And I am looking for a riding companion, not an escort, which is how it feels now.

                    On other fronts, I have been pretty faithful to getting in a good 20 mins 2x a week of rowing with my bowflex machine. It isn’t quite the same movement that I would get from a rowing machine, but it does give me the cardio workout that I have been missing out on. I walk, but the legs give out before I warm up, and I don’t have the trike in the house yet to use the trainer. This really works for me, and I am sure it also helps my poor damaged shoulders. Yoga continues once weekly, and of course my home based balancing/stretching/strengthen routines continue several times a week.

                    The clamshell exercises to address the knee caving on the trike continue to be modified, as we see just how very tight that hip is, and so far all these exercises have not consistently alleviated the problem when I ride. Got cut up real bad on a ride yesterday as I forgot to wear the compression calf sleeve. But I am just gonna keep doing it, as I still believe that I can conquer that issue.

                    I’ve started looking ahead to the winter, and just this am signed up for an adaptive ski/ride camp in early January with Steamboat Adaptive. The program is now headed up by the first instructor I had at Ski Spec, Bret Maul. It is a much smaller venue than Ski Spec ( total of 25 participants compared to the hundreds of Ski Spec…) I contacted Bret to ask if he thought it was a good fit for me, and he agreed readily. So I am going off to a new mountain this year.. I’ll miss Ski Spec , Breckenridge and all the great people there but know that I needed a change, and needed a program where I can really work on my skills in a more intimate setting. And it’ll be FUN!!! ( for info, go to then Programs, Winter, Camp.) I was told they will max out quickly...

                    So much for the one liner, huh? Oh! And on Eclipse day?? I was kayaking on a very lazy lake with friends. Cool way to safely watch the eclipse by looking at the water…. Partial in this part of the country, but so cool….

                    Carry on all
                    Be thankful. Dream Big. Never Give Up.


                    • #85
                      Sorry for the lack up updating Dave, life has gotten a bit busy but not as busy as Larry's!

                      It was so nice to read what has been new with you Dave, Larry and Veronica

                      I think since I posted last my hilly ride happened. I did 70 (as planned) instead of the century since it is nice to enjoy some time as the nice picnic that is thrown afterwards. I do not love hills but I beat my speed last year by 1.5 mph which was amazing! I felt great the entire ride, and really enjoyed all the rest stops and so many of the fellow cyclists was good.

                      Next up for me is a century out in the eastern shore is 2 weeks. Its nice and flat, just the way I like, but its near the water so there can be a steady head wind, so there will be a challenge.

                      As for my routine I have (again) dropped my strength training by the way side to focus on my first love....cardio, not a great thing. I am getting in a yoga class a week so at least I have that. In silly walking news, I have always been jealous of people pushing strollers because they have something to hang on to when they walk, I have always like pushing shopping carts. Having something to hold on to helps my balance immensely. So...for my birthday this year Steve got me a stroller for my cat. I have taken it out with the cat (my larger older cat, the younger one is not into it) and I love it! Its official though, I am a crazy cat lady!


                      • #86
                        Just past 3,000 miles

                        Ha, just past the 3,000 mile marker for the year - and it's snowing outside. Whew!

                        Veronica, I had you in mind when I mentioned the mental stimulation I'm getting currently, because of your move to less urban surroundings and all that goes with a change of that magnitude.

                        ALSO, good point, WHAT WERE YOU DOING ON ECLIPSE DAY? I went to an eclipse party at a local university with my daughter and grand son. 92% total, very strange quality to the sunlight around the maximum. Got some really cool pics of the shadows formed by tree leaves, essentially a shadow box picture of the Eclipse off of every leaf.

                        And Marina or should I say crazy cat lady. Congrats on the hilly, I'm sure it was plenty tough enough. And I love the idea of pushing a stroller although I can't say I know any cats that would tolerate that, but it's a great idea!

                        Same old stuff here, still getting 3 or 4 rides a week in and making sure one is at least 70 miles. Now that the snow has started I guess I'll have to get back to the club. I can still get some intervals in on the elliptical or the stationary bike and I'm kind of anxious to get back to a weight routine. Only a little over a month to the Tour de Tucson, hope we see the sun a few more times.

                        Later all,


                        • #87
                          Larry, this is a late reply, but I love your description of "chaos" and the joy it is bring you!
                          I also like reading about everyone else's adventures.

                          My hipflexors / core are very weak and I can't seem to overcome it, no matter how many clams... (it might be a lesion at T12?) So I felt maybe an orthotic that assists the hipflexor and gait follow through might be helpful to me now and at a recent neuro check I inquired about the electric stimulation leg braces and asked the doc to hook me up, please. He laughed and said he would be happy to support me with that but that insurance didn't pay usually and that the company that has marketed this great device doesn't give financial assistance (although it implies it will). He said one leg brace starts at $10K! Wow. Maybe Dave might be able to get a sample as Chief of this motley troop to tell us about it?!? But I guess what I really need is to follow all your leads and get this body moving some how to keep everything in use. Thanks for your motivation!


                          • #88
                            still kicking

                            Hello all,

                            As usual, incredible feats by everyone. Inspirational and gives me strength. I continue to make progress with my recovery. Sometimes it feels like baby steps. I continue with a serious schedule of physio and OT. Make it in and out of bed on my own. Still have supervision. Robot walker up to 70% of me moving it. 1400 steps and 400 stairs. Not walking much on my own but still hopeful. Have installed a water heater for my outdoor pool although it's not working well and hope to extend my season until the snow flies.

                            Neurologist and family doctor agree my event in March was an unexplained, undiagnosed neurological event. Still haunts me. Waking up in intensive care after being unconscious for 4 days and only could move 3 parts of my body: eyes, lips, swallow. Remember feeling that it was impossible. So, yes, I celebrate every gain.

                            Big hugs to you all.

                            Teena Marie


                            • #89
                              I'm so happy and proud of you to have made such improvement! Even if we sometimes feel our bodies have betrayed us, our bodies are able to make amazing recoveries.
                              I will never forgot laying in my bed after my serious flare and the PT came in to give me my first "workout". She told me to squeeze my buttocks and I remember being really really surprised that I couldn't. PT, OT and Aqua therapy, helped me regain a lot of my strength, but it took several years. I know neuros sometimes talk about repair in certain timelines, but our bodies do it in their own time. You might enjoy the book, Stroke of Insight, about a neuro who had a debilitating stroke and recovered over the next 7 years. She is uplifting & insightful. I choose to believe God and the universe still need us to do things in life. I wish you continued recovery and send positive energy your way! Suebee


                              • #90
                                Teena Marie! Yahoo! First for making such progress, and second for telling us... You cannot imagine how happy I was to see your name on a post here!

                                I get it that you have a daunting task in front of you, but from what you reported here, there's a good bit of it behind you already... and I know you will just keep it going as I have learned from your past posts that you are a very determined, strong woman. Raising my glass to you tonight, dearie... Carry on!!
                                Be thankful. Dream Big. Never Give Up.