Hi There:

Your posting was brilliant. Many of the symptoms you describe, I have or have had since 2003, when I was officially diagnosed. You're right, no one likes a complainer. If someone asks how I'm doing, I automatically respond, "Fine." If they push and say, "Why are you limping today?" Then I say, "MS." If they are close to me, they are very well-educated on what that means. If they are not, then they probably think I ate something with monosodium glutamate in it, and it REALLY didn't agree with me.

Like you, I'm one of those people 'living well with MS,' which is an oxymoron. I was disturbed by your comments about how the fatigue and numbness has limited your activity and exercise.

I was in a wheel chair and then on a cane in 2003, when the first cervical spinal cord lesion hit. I had had brain lesions, but they were arguing over whether or not I had CNS Lyme or MS. Had both. One drove the other. I have since gotten 4 more cervical spinal lesions. I have some brain lesions, as well. About 14, I think, last count.

Advice on the '5 lb weight' comment. In addition to being a professional musician and owning a concert website (www.digitalcafetour.com), I am a martial arts and fitness teacher as a serious hobby. I train 6 days a week, 2 hours at a time. It is THE ONLY thing keeping me looking like I don't have the disease.

The weights are where you will hit a road block. In order to get out of the wheelchair in 2003, I had to be able to manage MY OWN BODY WEIGHT, in terms of my strength, let alone free weights. I rehabilitated out of the chairs. I fight 5 3 minute rounds in full armor in Filipino martial arts. I grapple. I am also pressing 410, 3 sets of 12, on my legs. Wasn't that way when I first got hit in the neck. Here is what I recommend you do.

1. Visit www.mattfurey.com and order his Combat Conditioning book. Don't be intimidated by the macho strongman thing on there. It's  a marketing quirk, but Matt is a first rate martial artist. He's trying to sell books to a know-it-all community.

2. Ignore his neck bridging and other things of a dangerous nature in there. They don't apply to non-wrestlers.

3. Use the following exercises. Start with 20 minutes. Build up to an hour. Keep the pace continuous enough to keep your heart rate up. The first exercise is your prerequisite to basic, functional strength.

- Horse Stance Training. Feet parallel. Legs double shoulder width. Sit your weight down into your legs until your knees are bent to the point that you can't see your feet. Back straight. Hold for a minute. Get up to 3 minutes. Then 5, etc.

- Hindu Squats (body weight squats). Go as low as you can. Hold the compression of the muscles for as long as the quivering will allow you. Use a chair to balance, if need be. Your legs will still get the work. Try 25 reps and build up to 50 plus.

- Dive Bombers (like the downward dog in yoga). If done correctly, a set of 10 of these will slam your upper body. If you can only do 1 at first, then that's fine. Build up to ten.

- Basic Push ups

- Table Makers. Here you literally sit on the floor with your back straight and hands next to your pockets. Legs shoulder width. Then, you lift up with your pelvis and literally make your body into a table. Drop your head back for a spinal stretch.

- V-Ups. Toes pointed, legs straight, arms up above your head. Make a V with your body and bring your hands to your feet. When you come down, keep your head and feet six inches off the ground.

- BiCycle Crunches

I got myself off the wheelchair with horse stance training. I got myself off cains with the rest of it. I kept building up until I was demonstrating knife defense on television with my martial arts mentor. Body weight resistance is key to functional strength. The more you do this, the more your fatigue will minimize. Check out www.frichild.com. I'm the guy singing with the buzz cut and the acoustic guitar. Wasn't always thus.

Any more work out tips, if you want them, and email me at twalker@digitalcafetour.com.

Best,

Tom

Mandy Crest, Health Guide

11/ 4/08 2:54pm

Thank you so much for all the information on exercise. I must confess that it is my single biggest roadblock. I do everything I can to maintain good health, including a well balanced diet. But exercise has been my achilles heel.

 

I'll definitely take a look at these exercises to see if I can do better in this department. I'll let you know how I make out.

 

Thanks again. I'm sure I'm not the only one who could benefit from your comment...

TWalker

11/ 4/08 3:02pm

For what it's worth, I was in a secondary progressive framework when I got a final diagnosis. Now, I'm benign-ish relapsing remitting. I believe it's the exercise, not the Rebif, though that does help. A good lyme test by a QUALIFIED lyme specialist helps too. Minus killing that bug, I'd be dead. Period.

 

Exercise is EVERYTHING. My girlfriend has CIDP, which is demyelination of the peripheral nerves. This is very dangerous and potentially fatal. She was on a walker. She is now jogging. We work together. Check out www.lauradodd.com to see proof of my point. She does two hours a day. No walker. No cane.

 

Exercise cancels fatigue. I find marijuana helps, in small quantities, with my spacticity, sleeplessness and cognitive dissonance. It's a curative agent, not a drug. FYI.

 

T

Amen sister! I felt your grumbling way over here, and I must say that it is difficult to keep my mouth shut about my issues. Someone else who shares this stuff told me that after the first year, you don't complain as much. That is not true in my case, but I am more cognisent of it and try to bite my tongue. I mean, if the shoe were on the other foot, would I want to hear it? Thanks for sharing because we are all in this together!

Mandy Crest, Health Guide

11/ 5/08 12:32am

Maybe it's true that after awhile you don't complain so much, but I think that's only because you want to spare the other party, not because there is nothing to complain about. I find that as the years pass, I have more symptoms creeping in that are not obvious to the casual observer.

 

Thank goodness we have all our online MS friends to confide in, and thank you for stopping by!