MSers in Training 2018

[Marinadca]

Just a quick update on myself as I hate it when I'm following someone story and they stop posting.

I had my surgery on July 20th, and the recovery has been better than expected but also it is extremely slow and thanks to my balance issues I'm more often using my walker then my crutches when I get tired, which is often.


For now the only bike I'm no is an upright exercise bike, I'm not allowed to be on a very much but so far I'm up to 1 mile in a little under 7 minutes. So I guess there's nowhere to go but up from here.

Marina :-)

[Veronica]

Marina: THRILLED to read the update. Yup, I've been wondering how the rehab is going. Sounds like you have the right attitude...doing what you need to do, knowing it'll take time but that you ARE progressing. Well, look at the slight bright side...it got you back on an upright bike for a bit!

I came on the forum just to say that....I get out riding when it isn't pouring rain, thundering, or ridiculously hot and humid....which hasn't been much these past three weeks! But I have grabbed some good rides. Just waiting for a day when I am free to ride, and the weather agrees for the entire day to go get a nice long ride in.It'll happen SOME day...............

[teena marie]

Hello all,

Marina, admirable work and attitude. Does it feel good that surgery is now behind you? I am also curious to know how the anesthetic affected you.

As usual, amazing, inspirational work by everyone. Although I don't post often, I check in regularly.

Strength and endurance continue to increase. Walking with my sticks was amazing in June with glacier, cold water in my pool. Unfortunately, he heat has been phenomenal with water temperatures at 80 degrees. For me, the best effect is achieved at 64. I have also had some challenges with my left hip not supporting me. Recently, acupuncture and Chinese osteopathy has helped enormously. The next step will be to have me upright, supported by 2 strong trainers, who will walk with me and at the same time, there will be several acupuncture needles in my spine to open things up and increase the energy flow. It all feels good and with the recent addition of CBD oil, spasms are practically non existant.

My regular work with trainers was sporadic with the summer season, but soon to be back on track.

Take care all and several of you have big events upcoming so looking forward to the posts.

Teena Marie

[penkalet]

Good to ear from you Ladies and I have a question for Marina or anyone that got a surgery in the past.

I am going to have a hip replacement on the leg not too affected by MS and was wondering if we have more chance to get a relapse or pseudo one when the body is stress?

Other wise I am riding couple time a week again for a good hour now that all that smoke as dissolved. I also try to walk every day 20 minutes on the morning and 10 on the evening.
Best wishes to everyone.
Alain

[AMFADVENTURES]

Guilty as charged Marina, I've definitely been AWOL for too long, thanks for the call out! Glad to see you are on the road to recovery, hope you are being good to yourself.

I finally had to give up almost everything. I kept reinjuring my back at yoga, I could bike but only short easy rides, the weight room wasn't helping my back either so finally I just took a couple of weeks off from all of it. When I started back up I started with the elliptical, it didn't seem to stress my back. I've also been riding a fair bit the last few weeks but trying to keep it relatively easy, no weights or yoga.

The training program I was following probably wasn't right for someone my age. I only got a little over half way and would have needed 6 to 10 more weeks to get me in shape for the triple bypass, although had I not injured myself, I'm sure I could have gotten over the first two passes. I'm afraid I haven't figured this ageing thing out, much less ageing with MS. Seems I may need to slow down a little though.

Good to hear from you TM and good to see you are making progress. Hope you're having some fun up there too!

I like the idea of walking a couple of times a day Alain, I'm going to try to incorporate something like that too, and yeah, the smoke around here has been bad enough to keep me inside sometimes.

I really love reading about all of you E-wheel trikesters! You guys are definitely starting a trend! Looking forward to hearing a LOT more!

And Ellie, good luck with your tri training, so far it looks like you're knocking it out of the park!

Going out for a ride now, catch you all later,

Larry

[AMFADVENTURES]

Hello to all,

I love all the posts and a big thank you to Dave for making these exchanges possible.

Recovery continues. Presently, working at my local Y with 3 exceptional trainers 4 times a week. Also, in the pool 1-3x weekly. Standing straighter, taking a few steps, back at work and just had an interview for an interesting research job on the use of medical marijuana. So, I would have to say, I am so grateful and give thanks to the universe for my life.

Take good care all and congratulations to all for the hard work and perseverance.

Teena Marie

TM, I went back and found this post, I remembered you had said you might get involved in cannabis research, wondered if the CBD oil you mentioned in your last post was involved?

[ActiveMSers]

It appears either everyone is taking September off, or we've all been cranking it so hard, no one has had time to post. So I'll go first.

My fitness adventures have included a mix of home, trike and gym workouts. A wrist tweak slowed me down for a week as I finally had to take a break from my arm bike and let it heal (no clue what I did). Managed to set a couple PRs the other day and with cool weather in the forecast—only 69 today—getting outside is turning more enjoyable.

Updates from others??

[Veronica]

Ok, ok, "Pa".... I have been guilty of just not posting these past several weeks. Been continuing to LOVE my new ( or REnewed) ability to just ride where I want to, and at a happy pace.

I broke 300 miles since I got the assist ( mid June..) on Sunday. I added up my rides from the past two years and they didn't add up to that! So, for me, it is a momentus accomplishment.

We had our local ride a week ago Saturday and I told them I would be the Sweep for the 18 miler. Was originally gonna do the 25 route, but (1) we needed a sweep for the 18 miler, and (2) there was one hill on the route that is very short and steep and turns a corner where it has, like skiing, a double fall line and I just didn't want to deal with it at Mile 19 of that route. So I happily did the 18 with my Usual Buddies. One is very comfortable with hills, and the other two " Not so much".... Usually Sean is the one that would "guard" me on my non electric rides, and would walk behind me up those hills, much to my regret. Well, we laughed as he AGAIN walked up the steep hills, but for his own reasons this time!

The assist worked beautifully, still gave me a great workout. And I was able to stop and just wait for some of the stragglers ( that was me the past 5 years...) and then easily catch up with my buddies. Felt good that I was able to look after other riders for a change.

AND It was SO enjoyable to not be walking totally wonked out at the end as I did before. With the assist, I still have some reserve. Legs were getting fatigued, but with my trekking pole I was still able to walk around the park for the Post Ride events. SUCH a good feeling.

I have decided to again do BikeMS NYC on October 21. I "booked" in with a friend who lives 45 mins north of the city for the night before, so that I then only have to get up at 4:30am to get down to West Side HWY in Manhattan by 6ish... I have to say that I am really getting pumped about doing that ride around Manhattan again, and this time NO WAY no stinking bus is gonna get me!

Been a bit remiss in trying to get some hikes in. Some of that is the summer that we had, some was that I would rather ride, and some was just not pushing myself. Whatever.... not gonna beat myself up for it. My baby brother and wife are coming in a few weeks and I plan on taking them to the state park nearby where I did some hikes last year. At least I will get a little time there...not much distance, but as I said about ..."whatever"....

Yoga has also been hit or miss with me, as I am just getting over a cold that has lasted three weeks...hard to go to Yoga when you are coughing and can't breathe thru your nose.... Did some on my own at home, but I know I need the structure of the class. Still hate that it is at 8am on Mondays!

It is an Always that I do my stretching and balance work very regularly, and some strength training. My PT had me add an exercise to help me climbing stairs as I noticed that I have started to hike up my right hip to climb instead of lifting the leg. It seems to be helping a little so far. Actually is an exercise he gave me awhile ago, that somehow fell to the wayside.

So yeah, some really good exercising going on here with rides, and some goofing off on other things...

Now, I am starting to gear up for ski season.. I booked in for the Steamboat STARS adaptive camp again in early January where I will again be able to use the iSkiBike. Really looking forward to honing my skills on this... I am very happy that I have gotten my local mountain to agree to allow the use of skibikes that are self loaders. Now I just have to GET one! The adaptive program that I ski with there only has the older models where you need to dismount, and carry it on the lift with you. I'm not worried, have some plans to get this equipment one way or the other!

[AMFADVENTURES]

Still in the saddle here. I seem to be getting 75 miles in one week and 100 the next. It's been going like that for a couple of months. I get my HIIT's in on the short hills, usually a hand full or so per week.

Had to drop my yoga sessions because of a back injury but have been doing selective yoga exercises at home, enough to stay stretched out anyway. The back's a lot better now so I could probably start back up on yoga pretty soon.

What I really need to do though is get back into the weight room! I've been sorely negligent there and I know I will feel soooo much better when I finally do.

I've also been concentrating more on walking and my walking has improved, quite a bit actually! Although, I still haven't managed to break the 2 mile barrier. What is it about walking that is so fatigueing?

I'm also committed to skiing this year Veronica, on a ski bike. I have no idea how to get it up the mountain but I suppose all will be revealed in time. That thing looks hellish fast! When I asked what they would allow - flips, jumps, spins, stuff like that - all they said was that you couldn't take it on the mogul slopes. Yee Haw!

Off to a fiftieth year high school reunion this week. Say What??? Good grief, how did I get this old? I feel like I'm the oldest guy I know!

Hang in there all,

[teena marie]

Hi to all,

A very late reply to Larry. The use of CBD oil is not related to the research job for which I applied last winter. I declined it because it was full time and I already have some other work. I just posted on my positive experience with the spray http://thehydropothecary.com/products/elixir.

Training is picking up. I am getting tremendous improvement with my hip. My Chinese treatments continue to be amazing and with better alignment and less pain and spasms, I feel like the strengthening exercises are finally paying off. Walking very little but feel it is within sight.

Outdoor swimming is over and psychologically it's hard to return to the Y but I hope to return this weekend.

Hugs to all you amazing inspirational people,

Teena Marie

[Marinadca]

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!

[penkalet]

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

[cl3me]

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.

[AMFADVENTURES]

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

[ActiveMSers]

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.