MSers In Training, 2019

[Veronica]

Hi all: Need to check in and make comments! Dave and Larry: Happy to hear of your "male bonding" time... Good coffee story! Nice work shredding those tires Dave! Proof you're out there rollin' alot... And Larry, as I remember from your second half of winter reports of the past, Denver weather is very fickled this time of year...but it still astounds me how you can be riding one day, and get socked in with snow for the next 3..... Glad you got some more time on the ski bike and have passed the test... WooHoo for next season!!

Alain, Marina, Grady, and Hondo.... ugh...injuries and surgeries really do slow us down, but I hear from each of you that you aren't giving in to the setbacks and that's magnificent... Seems to be serving you all, in your individual ways, well.

Marina, I think that is fabulous that your PT and crew are so invested in solving the riddle of the stride issues. And GREAT that they used it to give some training to PTs not used to working with the likes of us... there needs to be more PTs knowledgeable in working with MSers. I worked with my PT a few months back when he had a grant to train PTs in working with MSers....really was fun, interesting to see the different perspective of Ortho PTs vs. Neuro PTs. He used me as a patient presentation.

And me? Well, the year has certainly had its ups and downs so far....After Steamboat, I came back intending to get my inside routine settled in for the winter, got back to back colds which zapped me, then managed to get food poisoning from store bought salad ( one of those bagged ones..) which resulted in me actually calling 911 while I lay on the floor of the bathroom.. Very dramatic indeed.... The local hospital ( 17 miles away...) offers to keep people over a certain age (......) for Observation in a unit off the ER, and since we were forecast for a snowstorm and I actually wasn't feeling very strong, I took them up on it. Glad I did, as when I got home the next day, I still wobbled around this place to the point of wondering if it triggered a relapse. Luckily it was just the effects of the illness and lack of good sleep at the hospital. So it took a few more days to get back my stamina, balance, strength, blah, blah blah. And haven't bought a bagged salad yet, and probably never will again.

I am FINALLY getting my rhythm of working on the trainer with the trike and starting to feel more consistent in doing cardio, strength and balance checks. I had really slid off doing everything for a while, and my body reacted to it in terms of my seeing increased spasticity... and increase in the trandelenburg gait issue that has always plagued me. With my being back doing what I should be doing more regularly I am already seeing improvement. Just so glad I cleaned up my act in time to catch this, but I still have alot to do to try to recover what slid away.

Now, my skiing has taken on a life of its own! I was so honored to have been a recipient of a donation from Turtle Ridge Foundation that allowed me to get my own iSkiBike... This has been in the works for the past 8 months or so, and it wouldn't have happened if not for a connection that reached out to me when I was first looking to see where in the NE I could use an iSkiBike. He and I have made a nice friendship as a result also. This has just blown me away.... the bike was made for me by the solo manufacturer in Montana, and he adjusted it for the petite 5 footer that I am.... I will be getting it to my mountain for its maiden runs this Tuesday,and then taking it up to New Hampshire to ski two days at Bretton Woods next week with He Who Fought So Hard for me to get this. We will be joining my "sister" MSer who has skied at Steamboat also these past two years. Turtle Ridge is Bode Miller's family's foundation, and they are based at Cannon Mountain. Plan to get back up to Cannon at the end of the season...snow should last to close to Easter...so I can thank them personally ( ), and so they can see that I am using this wonderful invention... Still helping my local mountain get comfortable with my using the bike here...they are nervous! Larry, I actually told them about your report of what Winter Park demands for people to be able to use them, and I think they will do a similar requirement of passing a test on proficiency and safety.

That does it for me for the moment! Carry on all!

[penkalet]

This is great that you could spend time together!
Must have been fun.
Dave, I think to remember that you were seeing dr Hutton for a while in Houston so you must have fans there already. I used to live there.
Now I am at the foot of the Sierra and supposed to be under the snow line. Well, not this year, even lost power for a week, thanks I have a propane generator but at the end I was running on fumes.
So plenty of time for yoga and PT exercises and of course I master the shoveling sit down or with the walker on the side for balance.
Larry, for the hip I am paying for been stupide 45 year ago (you know one of those Dave stunt but with far worse ending)
Best wishes to everyone.

[ActiveMSers]

Loved spending time with Larry. Good to be able to call him a friend. The best part might have been the first morning when we were sitting down to enjoy coffee when Larry said he enjoyed any type of coffee... except Indonesian.* "That stuff is crap. This is tasty--what is it?"

Laura: "Indonesian."

hahahahahaha

*Larry lived in Indonesia for many years and likely drank their "crap" second-tier coffee, while they shipped out the good stuff.

Been able to get out on the bike some, but the weather has been iffy. Got pretty chilly on my ride yesterday--only 45 degrees. But the big news: my Planet Fitness added both an upper-body ergometer (arm spinny thing) and a seated arm/leg cardio machine with foot straps to lock you in! I'll be writing corporate to add these to all locations. A good way to get cardio when weather is sketch.

[AMFADVENTURES]

The cold and frequent snow storms got to me so I took off for Tucson two weeks ago. However, all I managed to accomplish was one 40 mile bike ride! When it started raining there and didn't stop for a couple of days, I packed up and went back home.

On the bright side, I had the opportunity to enjoy Dave and Laura Bexfields unparalleled company and hospitality, both coming and going! Thank you Dave and Laura. It certainly served to reinforce my opinion of how fortunate we are as MSers to have you guys around. Next time we'll get that bike ride in! Long Live the ActiveMSers!

I came back to more snow and below zero temperatures so I've been in the gym for the past week but I have managed to figure out a schedule! It goes like this:
Monday Wednesday and Friday's are cardiovascular days, riding, elliptical or even just walking, at least one of which will be high intensity.
Sunday's and Thursday's are weight training days.
While every day is a stretching day, Saturday's and Tuesday's will be dedicated to it, and light core oriented calisthenics.

What's with all the hip problems? I certainly hope that gets worked out for you guys.

Here's hoping it gets warm enough to ride soon,
Larry

[Marinadca]

Its been awhile since I updated and I have really enjoyed reading about your adventures. Your happiness is palpable, Veronica .

As for me - recovery for my right hip scope has been, interesting. I'm working with my PT to resolve my gait and compensation issues.

Things on the bike are going better then walking however. I am on 3-4 times a week for 45 min - 1 hour at a time at the an FTP 20 off from what I maintained pre-surgery. I'm side on the trainer as I hate the cold and thats what we are getting here. I am sure the hills will slow me once I do get out but I am making good progress so I really hope I will be able to do what I used too. I decided instead of my usual 4 century rides I was going to focus on 2, BikeMS, and a late season ride that is very flat.

My PT is rather stumped with my gait issue as well. Yesterday at my appointment she gathered all the other PTs and owner and presented my case to them. They each did a million tests. The owner of the place used the time (2 hours!!!!) to teach the therapist who have never had a patient with MS. It was really interesting and me and my PT have several new theories to go after. So I will keep at it. For now I'm walking 1-2 days for 30 minutes. This generally caused various pain. Resolving that is my biggest goal for this year. I feel like if I can't fix it now - this will be my new normal and I really don't want that. This is not what is going to take my mobility.

[Grady]

THR recovery

Hi Alain,
Sounds like we are in the same boat. I was doing fine in recovery from my total hip replacement until I ended up with a kidney infection. That kicked off my M.S. symptoms and slowed my progress. I agree with your thoughts about PT. They know their stuff. I told the doctor who did my surgery that I will be just fine as soon as I can get on my trike and ride! Although I could set it up on a trainer I’ve decided not to do that. I’m very faithful with my home exercise program and go to the gym 3 days per week to lift weights and ride the bikes. Only about 46 days til spring!

[penkalet]

That, really sound like so much fan to play on the snow!
Not for me I never been much of a skier.
OK, few month ago I bragged so much about the progress of my new hip replacement the first month. But I must say the last 2 months have been more modest gain specialy after getting a cold that keep on giving. Anyway I finally rode my trike twice on the trail last week and I was very pleased. Now like you, I need some good weather to keep on going. Also I am very busy with all the PT to relearn to walk and it is starting to help
Also with the ms bad leg. It is incredible to see how many muscles are involved in walking. I think all of us with bad gait we should go to PT one a year because we just take bad habits that compound with each new weakness.!
The best to all of you.
Alain

[AMFADVENTURES]

Nice Dave! The new house and trail nearby must be very appealing! I might have to check that trail out sometime, from the seat of my bike. We'll have to talk about that.

So Veronica, I went up yesterday to get checked off on the ski bike. Conditions couldn't have been better! Six inches of new snow, temperature not too hot, not too cold, and since I was well rested, I didn't have any problems. We skied some fairly steep slopes too and although I did lay the bike down a couple of times, I was able to get back up and on without help. So now the NSCD will let me take one of their bikes out solo whenever there's one available AND I am confident I'll be able to handle it. Considering a season pass next year.

Haven't been able to get out on the bike lately, it's been snowing every 3rd or 4th day, so I'm thinking maybe a little road trip to some place with less ice on the roads for a few days. I've got a gang together for the MS 150 but I need to start getting some training in. I have been consistent with the weight room and stretching and yoga, but I'm missing my bike!

Take care all,

Larry

[ActiveMSers]

Gang! Larry great advice, I'm getting my trike tuned and getting a new set of tires as mine are fraying. Turns out I've gotten in some decent pavement and dirt time over the past year, at least according to Strava. (Sorry, not public.) My 2018 stats:

-140 riding days
-1000 miles
-280 active days of exercise (estimate)

Loved your intro to 2019 and I do hope to share a beer with you this year. And Veronica--hot dang with your ski bike recap. Smashing!

My 2019 is starting out strong, including a work out January 1 at our hotel in Vegas during our week-long holiday to Death Valley and Joshua Tree. I've had a chance to bike here in ABQ a number of times in between snowstorms. Others clearly have been having the same thought process. I've seen Olympian runners out on the trail trying to squeeze in a workout, also taking advantage of the weather. And I thought I was the only idiot to go out in 48-degree temperatures in shorts!

With the furlough I've been able to spend a lot of time with Laura (and cleaning), but not too much on ActiveMSers. When she goes back to work, I will too.

[AMFADVENTURES]

Ice Road Biking

I am starting to get my exercise routine down but of course it highly weather dependent at this time of year. I ride on the nice days, 45 deg and above and only if there's minimal ice around, walk on the colder days and lift weights or go to yoga on the miserable days. So far I've been out on the bike 3 times this year.

The second of the bike outings was with 3 of the guys I frequently ride with, 2 of whom hadn't been out since the end of last season. The ride was dicey from the start because, in spite of 3 or 4 days of above freezing temperatures, there was still quite a bit of ice on the roads and trails, definitely more than we expected.

We arrived safely at our half way point but while we took a short break one of the guys noticed his tire going flat. He set about fixing the flat, installing his spare tube but discovered his compressed gas cylinder was empty when he went to fill it. One of us loaned him our kit but the new tube didn't hold air, turned out to be a pinch puncture. So one of us loaned him another tube and another gas cylinder and the second installation was successful.

We turned around headed back home but after about 5 miles one of the other guys noticed his tire getting low so we took 5 minutes to pump it up and continued on. 10 miles later we did it again.

We were riding on the south side of the street which tended to be shaded by north facing buildings, in the shade of which there was frequently black ice. One of the guys got caught off guard and was going too fast to stop so veered to avoid the ice into the traffic lane nearly colliding with an 8 wheeler truck and almost taking me out on his way. Well all is well that ends well and after 4 incidents everyone arrived safely back home.

All of the incidents involved the two guys who hadn't been out since last season. The moral of the story is; Now is a really good time to have your bike/trike checked out and made road worthy. Also check your kit, make sure you've got everything you might need for basic road repairs, and maybe add a little extra just for insurance. And most importantly, if you haven't been riding for several weeks, take it easy and be extra careful, it could take a couple of rides to fully regain your road skills.

It's early season so be extra careful out there,

Larry

[AMFADVENTURES]

WOW is right! I think this is the most excited I've ever seen you. Makes me want to go out today!

Way to go Veronica, great story!

Larry

[Veronica]

Grady, I hope you get to try out an iSkiBike. There are only about 40 of them, as the manufacturer is a one person factory! Not many adaptive ski programs have them to offer, but I know that BOEC ( Breckenridge Outdoor Educational Center) and the adaptive program at Keystone has them for their students to take lessons on.

But in general, with the right instructor and adaptive equipment, I am sure you can pick this up easily. Of course, with your hip replacement you would talk to your doc about this. I had a fortunate run of no fall days, but I have fallen, and it isn’t necessarily a soft landing. As Larry talked about with the other model ski bike, it can take a bit of body negotiation to get up!

But there are other pieces of equipment that people can use to ski. The woman I met there last year who also has MS uses a bi-ski, where you sit in a what is knicknamed a bucket. And you use short arm outriggers to steer your turns. She got to do her first black diamond this trip, and enjoyed playing on the half pipe!

And as I have learned , it may take several attempts to get the right equipment.....but ultimately so well worth it... I’d definitely check out what is near you..... Go for it!

[Grady]

Skiing

All I can say is wow. Great experience and a great story to share. I might have to check it out. I’ve Nordic skied in the past but never downhill. Will that be a problem?

[Veronica]

Hi Gang:
Before I tell of my latest adventure I have to comment on your creative writing Larry! Loved it, and how you blended in your goals for the year. Glad to see that you have your usual ambitious and attainable goals!

So I am back from my week in Steamboat Springs, Colorado at the Steamboat STARS All Mountain Camp. Holy cow…. I don’t even know how to start telling you all about the experience. I think I will start by saying that by the end of the fourth and final day there, I logged close to 15 hours skiing, skied each of the four days on the iSkiBike, had the exhilarating high of going to the top of the mountain one morning and skiing down greens and BLUES.

My confidence and skills have gone from 10 to 1000 ( well, it feels that way…) and I find I look at trails differently now. Speed has greatly increased ( was clocked at 35 mph at one point..). I am much more confidence with turning at a higher speed, feel very comfortable “burning off some speed” when I need to AND with all that skiing, I didn’t fall once. Really.

I skied the first three days with the instructor who has the ski bike that I learned on last year. He lives in Idaho, and was a guest instructor for the camp….and he offered the bike to me to use there again. So we were paired up, and we had a blast together. Often there was a third instructor or camp participant with us, and I finally learned how to have fun with friends skiing. When I was using the outriggers, and was a stand up skier, I was always just stressed to keep my balance, terrified of much of the terrain, and always asking what my form looked like. And my legs pooped out so early in the day.

On the bike, I just had fun, and we laughed and told terrible jokes and YeeHawed down the mountain daily. And I ended the mornings knowing that just taking the lunch break was enough to recover and go out in the afternoon for a few more hours. No MS fatigue , just the tiredness you feel after skiing. The last afternoon I was very tired, but knew it was safe to go up just for a little more. Sitting on a bike being abit tired is a lot safer than trying that as a four tracker. My MS never got in the way of my skiing. That final run… a nice easy but long run was just to play around on the mountain, and when I stopped mid way down to say that this would be the last run, the lead instructor concurred as he saw the tiredness in my skiing. Still I made it down totally under control, just slower.

Skiing on more challenging terrain was something I had really dreaded, and that day of skiing from the top I knew I would be doing blues. Anthony Instructor downplayed them before we started calling them “Green/Blues”. I had gotten to really trust him and the others, so I just made the decision to NOT look at the trail signs, knowing that if I saw I was about to do a blue, I would end up “in my head” and just muck it up with fear. And probably throw up! At one such head of the run, we stopped and he had me look down at the run. It was a long, steep trail and was freaking me out. I don’t know what he expected me to say when he said to look at the trail and tell him what I saw. I think he expected me to say something about it just being a series of turns, but what I saw was “Death”…… His response to this was to guide me through it by then telling me to NOT look down the trail but to look at him as he skied backwards traversing the slope and had me follow him and fix on his eyes. And this is how I got thru it….linking turns, just looking at him and not “down there” and it worked out beautifully. Learned a lot from that.

The day we skied down from the top I dubbed “ Best day of my Life”, and really meant that. To have that total joy of movement just overwhelmed me and humbled me. I am tearing up as I type this. At lunch I told them that I had sat there last year looking at the mountain when I was still trying to make the four tracking work and told myself that I would have to be happy only ever getting to mid station on the lowest chairlift. But look where I am now. I said that this journey has taken me 10 years…(I took my first adaptive ski lesson in January 2009)….to find the way, but now I am here…skiing better than I did when I was able bodied. And when I tried to say more, I just choked up with emotion, turned and saw my instructor all teared up too. It was that powerful a week for me.

And besides all that emotion, it was wickedly fun. Marina, your comment awhile ago concerning getting up from the trike and saying to Steve or whoever to just “be my steady” has been something I have used enough to use it naturally. So when Anthony was helping me get the ski binding on my snowboard boots, and I was a little off balance, I put my hand on his shoulder and said without thinking “ Just be my steady, ok?” So that was one of our jokes of his being my Steady. And all of us who skied together just had such child-like fun. On the flats we raced each other, and often I honked the bike horn that Anthony had put on the bike. Four of us in a row on the lift would do a group “ YeeHaw”. Obviously I could go on and on….

Now concerning ski bikes in general, I really think that this is the bike for us MSers. Not only does it allow you to stay seated on it to ride the chairlifts ( yeah, we had some mishappens, but no injuries, and just a learning experience for both us and the lifties.) but the foot skis are also made by the bike’s manufacturer and are superior to those I used with the much older ski bike at my adaptive program. The ski ends flush with the back of the boot and has a metal cap on it. When I need to slow myself, on a straight away, I can just dig in my heels and it acts as a brake. Really helped in that “burning off speed” at times.

So I am off to a great start of my ski season. Still don’t have this type of ski bike at home so I am not skiing at my mountain until that may happen. In the meantime, I plan to travel to the same small ski area I used last year, where another adaptive instructor has the iSkiBike and enthusiastically offers it to me. It can be a good time for me to just hone my skills.

What a great feeling to know that nothing is holding me back now from totally enjoying this sport. So glad I didn’t give up last year….. I have a Glee trail streaming from me and expect it to last for a long time! Permanent smile on my face…. It has taken me three full days to settle down from the trip.... now just grinning like the Cheshire Cat...very content.....

[AMFADVENTURES]

We went to a dinner theater on New Year's eve, a murder mystery, lots of audience participation, tons of fun, got home just before 11:00 PM. I sat down and turned on the TV thinking maybe I'd stay up and see in the New Year but I only made it until a few minutes past 11 before I shut everything off and went to bed.

I woke up a couple of minutes before midnight to someone rustling around in the chair next to my bed, a chubby little tyke wearing only a diaper and a banner proclaiming 'Happy 2019!', he said "Oh, hey old man, did I wake you?"

I responded with a sleepy wine soaked "Mumpf! Oh, huh, it's you. Thought about trying to stay up to see if you'd drop by but I'm afraid I didn't make it. Sorry. Geez kid, a diaper and a banner, it's below zero out there!"

"Yeah, it's cold out but I wanted to drop by to see if you had anything to say before I get started."

"Well sonny, you've got me at a bit of a disadvantage here, but come to think of it, there probably are a few things that might be cleaned up. For starters you could use to loose about ten pounds."

"Ha, how did you do that old man, been sneaking into the cookie jar again?"

"Well no, less than in the past anyway, it's probably got more to do with beer and wine, I mean we did learn our lesson many years ago about too much Holliday cheer, right. Our diet hasn't been all that bad either, but I suppose diet is one of those 'Continuous Improvement' things. And, actually I suspect it could have something to do with age. Put that on your list kid, a good age related diet."

"Alright, I can do that, maybe I'll ask for a little help from my friends. What else you got pops?"

"Yeah, okay, well on the training front we ended up with a classic over training injury while we were training for the Triple By Pass and it cost us all of the rides we had planned for the season! Although the triple might have been overreach, I think a big part of the problem was that you weren't doing enough stretching or not the right kind. So here's another one for your list - I still maintain that dealing with the MS is all about the training, ie:the exercise, but it's not just about the exercise, there are other things you've got to do right too, like stretch!"

"Wow, tough lesson, I'll try not to screw that up dude! Hey, speaking of the MS, got anything on that front?"

"Yeah I do son, you're not doing too bad but it seems you might have taken a little hit last summer and it may have been preventable. You'd do well to stop trying to screw around with the DMT schedule and just stick with the program. If something happens down the road well, deal with it then and mui pronto. It's not so easy to recover from those little hits when you're SP you know."

"Hmm, yeah, I get that. So tell me, are we doing any rides this year Pops?"

"Good question kid. Seems the 'Bullet' is back and she's got you and the MS 150 in her sights, so get ready. Also I was talking to 'Legg's' the other day and apparently she's gotten herself some new bike shorts. You know what that means. Oh, and the old guy who trained with you for the Triple last year, well he wants to try the Triple this year and he wants you to train with him! So good luck kid and don't forget what I told you about over training and stretching."

"Aww geez old man, you're just not letting up at all are ya? Listen, it's almost time, I gotta get going or I'll be late for the new year. Is that all you got?"

"Just one more thing kid. We're way out of our league on this one, but I've committed you to a safari in Kenya next year so you better start doing a little more walking, you know, in your spare time. And hey, just for the hell of it, why don't you see if you can reconnect with that ActiveMSer guy, Dave something or other, like for a beer or something, I hear he's a world traveler, maybe you can learn something."

"Good grief you old fool, what have you gotten me into! I'm outta here before you come up with anything else. Happy New Year you crazy old coot and take care."

"Yeah, Happy New Year to you too kid, and good luck!"

Wow, now that I look that over, it looks like an awfully full plate. I think my plans will need to be particularly scalable this year.

So, anybody got any lessons from 2018 to share, any plans for 2019 yet? This is the place!

Happy New Year everyone,

Larry