MSers In Training 2011

[Stella]

Dave- You are definitely making progress. After my fall 18 months ago, I was only comfortable on an inside bike. It is an excellent way to build fitness and stamina with minimal risk to your body and joints.
Stella, my family (Wardrop) was originally from Leshmahagow Scotland- basically Glasgow.
A tandem is a bicycle built for two. We bought it due to my reaction to Gilenya with the decreased exercise tolerence despite pretty aggressive training. Now I can ride the longer group rides without being dropped or left behind. I have attached a photo-maybe.
Pouring rain today and I am too lazy to go to a spinning class. Even though the Derby is only 80 miles away, I have never gone. I am waiting to the invitation to the posh clubhouse. I am not an infield sort of girl.

Pell

Hi Pell,

I am not familiar with Lesmahagow but I looked it up in the map and it looks like it is just south of Glasgow and Edinburgh just about in between. When you mentioned Tandem, I immediately thought it was some high-tech excercise bike! Thanks for the clarification and photo. I am so sorry to hear that you had a bad reaction to Gileyna. Are you still taking it? I am due to go to the specialist for the first time where I suppose he will assess me and probably figure out what medication I need to go on in a couple of weeks. So part of me is looking forward to it and the other is not. I am still trying to come to terms with the diagnosis as part of me felt like it wasn't a "formal" diagnosis. Also have been trying to find out information through the internet about this disease as was basically sent away from the neurologist without any information and in a state of shock. There is a similar posh race like the Kentucky Derby in England called the Royal Ascot (where the Queen attends) and it lasts about three or four days and everybody dresses up. I've never been personally but have watched it on TV.

All the best,

Stella

[Stella]

Pell,

Forgot to say that the Queen loves her horse racing!

[Stella]

This guy makes riding a bike look so easy!

GO Full screen! And Hang on !!

http://www.gadling.com/2011/03/03/do...aolshare_email

[pawpaw]

That bike ride was wild!
I am still on the Gilenya and just working to overcome the effects on my exercise tolerance. I am more fit than most with MS, so my situation is a bit unique. I am taking the Gilenya to try to avoid the longterm cognitive issues that seem to come with MS.
I have had MS for over 10 years. About 5 years ago I quit my full time job partially because of the severe fatigue I was experiencing. With a bit more time on my hands, I realized that it was my responsibility to change anything that I could in terms of my health. I started a diet and exercise plan and lost 30#. At first, I couldn't exercise for more than 30 minutes. I pushed my limits almost every day- frequently I napped longer than I exercised. After about 6 months, I could briskly walk for an hour or do the elliptical machine for 45 minutes very fast. Then I started to run. Two years ago I trained to run a half-marathon. I didn't complete it due to unseasonable heat that day, but I had run 12 miles 2 weeks before. Shortly after that, I started cycling. We bought road bikes exactly 2 years ago and started riding like crazy. Luckily, my DH has been bitten by this passion as well, so we ride together. We rode two century rides (100 miles) the first year. We plan to ride the Horsey Hundred in a couple of weeks on the tandem.
I truely believe that vigorous aerobic exercise is a vital part of treatment for MS and for general well being. People who haven't seen me in years are amazed at my appearance. My MRI has shown very little progression in years and I have had no exacerbations, despite the fact that I was off all meds for almost two years. My fatigue has basically disappeared- except after long bike rides and that is probably just exhaustion.
So, I think Dave has it right. Exercise is the most important thing we can do for ourselves. I do think the DMD are an important part of the picture.
Stella, I couldn't "hear" my diagnosis of MS for nearly a year, so I didn't get on meds as soon as I should have. If the doctor used probably or most likely in our discussion, I just kept thinking, well maybe I don't have MS. I think it is normal to be in shock for a while. I am glad you are seeing the specialist soon. Keep doing your research and make a written list of questions you have for your visit. Everyone is different, but the Gilenya has been the easiest drug to take. I was on Avonex for a year and Copaxone for over 2 years.
The Queen makes private visits to our area every few years. I believe she even has some horses boarded at the Farish farm. We ride bikes by the farm (mansion) where she stays when in the Bluegrass area.
Sorry for the longwinded reply
Pell

[Stella]

That bike ride was wild!
I am still on the Gilenya and just working to overcome the effects on my exercise tolerance. I am more fit than most with MS, so my situation is a bit unique. I am taking the Gilenya to try to avoid the longterm cognitive issues that seem to come with MS.
I have had MS for over 10 years. About 5 years ago I quit my full time job partially because of the severe fatigue I was experiencing. With a bit more time on my hands, I realized that it was my responsibility to change anything that I could in terms of my health. I started a diet and exercise plan and lost 30#. At first, I couldn't exercise for more than 30 minutes. I pushed my limits almost every day- frequently I napped longer than I exercised. After about 6 months, I could briskly walk for an hour or do the elliptical machine for 45 minutes very fast. Then I started to run. Two years ago I trained to run a half-marathon. I didn't complete it due to unseasonable heat that day, but I had run 12 miles 2 weeks before. Shortly after that, I started cycling. We bought road bikes exactly 2 years ago and started riding like crazy. Luckily, my DH has been bitten by this passion as well, so we ride together. We rode two century rides (100 miles) the first year. We plan to ride the Horsey Hundred in a couple of weeks on the tandem.
I truely believe that vigorous aerobic exercise is a vital part of treatment for MS and for general well being. People who haven't seen me in years are amazed at my appearance. My MRI has shown very little progression in years and I have had no exacerbations, despite the fact that I was off all meds for almost two years. My fatigue has basically disappeared- except after long bike rides and that is probably just exhaustion.
So, I think Dave has it right. Exercise is the most important thing we can do for ourselves. I do think the DMD are an important part of the picture.
Stella, I couldn't "hear" my diagnosis of MS for nearly a year, so I didn't get on meds as soon as I should have. If the doctor used probably or most likely in our discussion, I just kept thinking, well maybe I don't have MS. I think it is normal to be in shock for a while. I am glad you are seeing the specialist soon. Keep doing your research and make a written list of questions you have for your visit. Everyone is different, but the Gilenya has been the easiest drug to take. I was on Avonex for a year and Copaxone for over 2 years.
The Queen makes private visits to our area every few years. I believe she even has some horses boarded at the Farish farm. We ride bikes by the farm (mansion) where she stays when in the Bluegrass area.
Sorry for the longwinded reply
Pell

Hi Pell,

lovely to hear from you and thank you for your reply. I do appreciate any advice. You really sound very admirable and you have given me the motivation to get out there and give it my all. Although I have been going to the gym every other day, I am thinking perhaps trying to extend it to an everyday thing. Other than when it is hot weather, do you have any problems when you walk or run now? I have an annoying limp. I don't know if it has anything to do with the MS as I twisted my ankle horribly a while back and it has taken a while to heal. But I have noticed that when I run, after a while, my right leg starts to drag and then I have to cut my run short. This is something that has happened within the last six months. I especially feel really self conscious when I am walking and someone asks me if I've hurt my leg. So I try to lift my right leg a bit more. But that is very admirable you almost completed the half marathon! Well done! I wouldn't worry that you didn't complete it because of the weather as you proved to yourself that you could do the distance whilst training. Your cycling experiences sound wonderful and it sounds as if you are getting the most of what you want out of your cycling and most important, living your life to its fullest!

I appreciate hearing of experiences with medications, in case I get put on a certain one at least I will know what I might expect. I feel stupid for asking but what is DMD?

It doesn't surprise me about the Queen owning some horses in Kentucky. She really loves her horse racing.

Anyway, I hope you are enjoying your day!

Stella

[AMFADVENTURES]

Hey Stella,
A DMD is a Disease Modifying Drug, sorry I’m probably not much help to you because the closest I ever came to taking one was Lipitor. That was based on a couple of studies I saw in the late 1990’s which indicated that Lipitor was nearly as effective at reducing progression as the FDA approved DMD’s available at that time. I stopped the Lipitor 3 or 4 years ago when I accidentally figured out that it was responsible for the escalating muscle and joint pain that I had been experiencing. However, I suspect that a DMD or other treatment option is in my future. Gilenya appears to be the most promising at this time.

Like Pell, I credit endurance exercise for the relatively minimal progression of my MS over the last 7 or 8 years although, I concede it may not be in the best interests of everyone. And like Dave, I think that staying active is one of the best therapies for MS. I also think it’s important to eat right, low animal fat intake, plenty of fruits, vegetables, and grains and otherwise maintain as healthy a lifestyle as you can. Hope the new neuro works out well for you.

BTW, great video clip, might have to look for one of those helmet cams, it can get pretty exciting on the bike path on a Saturday morning.

[Stella]

Hey Stella,
A DMD is a Disease Modifying Drug, sorry I’m probably not much help to you because the closest I ever came to taking one was Lipitor. That was based on a couple of studies I saw in the late 1990’s which indicated that Lipitor was nearly as effective at reducing progression as the FDA approved DMD’s available at that time. I stopped the Lipitor 3 or 4 years ago when I accidentally figured out that it was responsible for the escalating muscle and joint pain that I had been experiencing. However, I suspect that a DMD or other treatment option is in my future. Gilenya appears to be the most promising at this time.

Like Pell, I credit endurance exercise for the relatively minimal progression of my MS over the last 7 or 8 years although, I concede it may not be in the best interests of everyone. And like Dave, I think that staying active is one of the best therapies for MS. I also think it’s important to eat right, low animal fat intake, plenty of fruits, vegetables, and grains and otherwise maintain as healthy a lifestyle as you can. Hope the new neuro works out well for you.

BTW, great video clip, might have to look for one of those helmet cams, it can get pretty exciting on the bike path on a Saturday morning.

Thanks Larry, I should have known DMD was something like that. It is good to hear your MS has been minimal progression. You, Pell and Dave have really inspired me into more vigorous excercise. Let's see if I can keep it up! I will also try and eat more healthy foods. Glad you enjoyed the video clip!

[pawpaw]

Stella,
My guess is that your leg problem is foot drop and it is a common MS symptom. If it is causing problems, there are splints that go in your shoe and onto the back of your leg to hold the foot up.
I don't think pushing your activity level can hurt. I push myself much harder than I thought was possible a few years ago. Hopefully, your doctor will agree. If not, I might look for another doc. My doctor has been amazed and very pleased with what I am able to do. Keep a list of all of the questions you have and ask your doctor. Don't be intimidated because he is the specialist. Be sure you get answers to all of your questions and that you understand everything that he/she says. It is amazing how much I forget when I get into his office.
We rode 33 miles today- our usual Friday ride- on the single bikes and I felt great. We finished at just over 17mph and I wasn't completely whipped. Average HR 129, max HR 149. I pushed pretty hard and had to slow up a bit near the end, but still finished pretty strong. My DH was struggling to keep up!
Tomorrow, if the weather cooperates, we hope to ride 63 miles on the tandem.
Keep riding.

Pell

[Stella]

Hi Pell,

thanks for the wonderful advice. I will definitely start making a list of the questions I have and really make sure I understand. I will also address the issue of the foot drop and see what the specialist thinks.

Your bike rides sound so exhilarating! 33 miles today and now 63 miles tomorrow, my lord that is amazing! Keep up the great work!

Well, today, I was to go to the gym but when it came to it, I was too tired when the alarm rang, I just hit the snooze. So I will have to try again on Sunday. What is DH?

Good luck tomorrow and have lots of fun!

[AMFADVENTURES]

5/6/2011

Got 9.25 hours this week for about 135 miles. I’m closing in on a 15-mph average, up from 13 earlier in the season, so am undoubtedly making better progress than perhaps I sometimes think. Will start to extend my climbing rides tomorrow.

My VO2 (volume of oxygen) test went pretty good. Overall I ranked at the level of a recreational athlete, not great aerobic capacity or power but not bad either. There was a pretty significant difference in the strength between my right and left leg, depending on muscle groups involved, but I guess I already knew that. I was advised to get back to the weight room and work on everything, in particular, my right leg. One thing the physiologist emphasized was to select a couple of muscle groups each week and lift heavy weight with fewer repetitions. His reasoning, in addition to the strength aspect, was that more neural networks were involved in lifting heavier weight, inferring I guess, that the neural networks need a workout too. If you ever get a chance to do a VO2 test I’d highly recommend it, if for no other reason than finding the heart rate ranges you should be exercising at and learning the stages your body goes through at the different heart rates required for an endurance sport.

Dave, the other thing the sports physiologist said was to take it a little easier, develop my base a little more. It looks like you’re doing that the right way. Are you looking at riding in the NM MS 150 later this year?

Gees Pell, 33 miles @ 17 mph with an average HR of 129! That’s nothing short of phenomenal, well done.

Stella, one more thing, incase your brain isn’t already exploding. Many MSers, myself included, report periods of increased mental stress as a trigger for relapses. To whatever extent I can, I refrain from getting involved in potentially stressful situations. That could also be another reason that exercise seems to be so helpful to MSers, as it is thought to relieve some of the harmful effects of mental stress.

Later all,

[pawpaw]

DH= darling husband or some variation of that depending upon the day.
Get to the gym- I found I have to push some days when I don't feel like it. I use the rule that I have to try but after 15 minutes at the gym, if I don't feel like continuing, I can quit. Usually, I continue and feel better after exercise than I did before.

Pell

[Stella]

I am absolutely gobsmacked reading the amount of excercise you guys do (Larry, Pell, Dave, etc.). Absolutely incredible and a big well done! I am really inspired! And my main aim is to be up there with you guys someday in regard to endurance, strength and physical activity!

I have gathered that about the stress already Larry, lately, I have been even more stressed than usual these days and in turn, I have noticed trouble with my vision, back ache, I will definitely get my butt out there and just do it as Nike says! That is the main motto I used to keep in the back of my mind when I was more consistent with the gym. But you are right Pell, once you finish your workout, you feel so much better for it.

Pell, I thought that is what DH meant, but I didn't want to assume! I can understand though on certain days the darling husband can become that darn husband, lol

Enjoy your day you all and happy riding!

Stella

[pawpaw]

Good couple of days on the bike. Yesterday I felt very strong for the 33 mile ride on the single bike. Today we rode the tandem for 42 miles (shortened due to rain) and felt strong again.
The single leg presses I have been doing at the gym have really helped the imbalance I had in my hips. I still need to make some tweaks to the tandem fit, but overall it is fun to ride.
We want to ride the century in a few weeks, so we really need longer rides soon. We were pretty tired today, (long nap) so not clear we will make the century. My sister is coming next weekend so we won't ride all weekend.
I am still having the lower heart rate but it seems that I can push pretty hard. I am probably just adapting or accepting the way things are.
Stella- are you from the US or Scotland?
Pell

[Stella]

Hi Pell,

Well done on your bike rides! Keep up the excellent work! I also made it to the gym and am so glad I did. I almost didn't go as there was a torrent of rain just before I left but good thing it stopped and I feel all the more better for the workout. I was born and raised in California, Pell.

Stella

[Marinadca]

Sounds like you all are doing so well! One day I hope to be up there too

On Saturday we did our longest ride yet - 25 miles. My speed was all over the place, climbing slows me to down to 8mph, embarassing, but on a flat stretch I was able to maintain 18-20 mph, generally I was in the 15 Mph range though.

I did get the HRM and am fascinated by it. On the indoor trainers I am usually at 125-135 and on the road I am in the 150 range. Not sure if this is good or bad, I am mostly in the observational phase at this point.

As far as training plan, we've been doing 1 hour on the indoor trainers each week and trying to increase the mileage on a long weekend ride. 5 hours on the bike total this week for a total mileage of about 80 miles.

I am panicking about not being able to do 60 miles on the 11th of June, but I guess I will just see where it goes.

Since we managed the 25 miles on Saturday I wonder what to do this weekend - 30 or 35? I don't want to push too hard and end up frustrated, but with only 4 weekends before the ride, I am not sure what is best. I have an option to drop down to 30 miles, but I am sort of loathe to do it, I am definitely hard on myself in general.

Marina-