Weight loss was a big indicator of how much muscle I had lost. At 6'4" I was at 252 lbs in March 2011. I started having a big problem going up stairs and took physical therapy to build strength. By June 2011 I was finished with PT and starting hitting the gym 2-3 times a week to work my legs out as taught in PT. I am NOT a gym person. :) You do what you have to do though.
I was losing 3-5 pounds a month steadily. I had some strength improvement until around October when I started losing leg and upper body strength. I was down to 223 lbs by Thanksgiving. Around Christmas my wife told me I had lost my butt. Which, I have to agree I have. All those nice gluteal muscles which get you off the couch and help you up the stairs had shrunk where I could grab the muscle group into the palm of my hand. My left leg had show little improvement (and still doesn't) working it out solo doing leg presses. It can still only push 20 pounds. My right left is better and can do 110 all by itself. Thats the only reason I'm still as mobile as I am.
Anyway, some of my weight loss has been from constant exercise. Some has been from reduced appetite. And some has been from muscle loss. As of this morning I'm down to 205 lbs. I'm happy about the weight loss overall. I weigh less now than I did in high school. Now I'm tall and skinny.
Has anyone else lost a lot of weight / muscle as I have done?
I also have lost a lot of weight for me. I weighed 135 lbs. I lost 15 lbs the first month. I just tell everyone that, that is what my prde weighs, because I can't get on or off the toilet (except in my own home.) So whomever I am with has to help me. There has now been a lot of people who have seen me naked from the waist down. Just started my IVIg & Prednisone 3 weeks ago. Some improvement seen.
Appetite is good, just can't get the weight back on. Looking forweard to the future though. Could be the Prednisone. I take 50 mg on Mon & Wed & 100mg on Fri. On the days that I take the pills I don't sleep AT ALL. So I literally only sleep every other night.
I have been reading your posts and it seems you and I have walked the same path. I havent seen weight loss to the degree you have but significant calf muscle loss. My calf muscles were huge (naturally). They are now about 60% what they were. (They look like a partially deflated mylar balloon!) My toe stand exercises (using incline machines) and walking 30 minutes (3X week) keep me going. The rocker sole shoes help tremendously. Is truly amazing how we all have different outcomes. I have noticed only very slight upper body weakness. Stairs are a challenge and noticing more balance issues this month.
What other specific exercises have helped you?
I start my workout with 10 minutes on the elliptical walker. Anything more than that bores me to tears. Even watching a movie or listen to music has always been tough for me to get through the "cardio" piece of the workout. Not that I can go at fast enough of a pace for it to really be cardio. Just exercising the legs.... After that, Leg press, curl, and lift. Then upper body I hit the machines for reverse butterfly, butterfly, rowing, bicep curls. I finish with the hip adbuctor machine. Side lifts, knee lifts and knee pushes. And I'm tired when I finish. I always take my cane so I can walk out of there.
The leg work three times a week has helped although I did make a gain and then got weaker. As I've learned, if the body doesn't fire off the muscle and use it, the body eats the muscle. Exercise doesn't matter. But for those muscles left, they get stronger. I added the hip abductor machine to my workout when I spoke with my physical therapist about balance. The hip muscles keep you balanced. Mine had become very weak so I've been working on that for a month now. Leg work, leg work, leg work!
As you, my left calf is about gone. That's the side I have foot drop on. I've about lost the ability to stand on the toes of my right foot or walk on my heel. That's telling me that foot drop on the right foot is not far away. I hope the IVIG reverses that.
Oh, I did try the rocker shoes. My balance is so bad that they just stressed me out try to stand still. They didn't work for me just because of my lousy balance. I gave them to my son.
I've not the breath or stamina to just walk around the block twice. I wish I could. That's why even the 10 minutes on the elliptical walker is so important.
Still though, I walk in Walmart and everywhere else we go. A cane for short distances. I'll grab a shopping cart in Walmart. Walking, shopping, and standing on my feet for about and hour wears me out. However, I'd rather be walking on my own, trying to get stronger, than grab the electric scooters by the door that I see so many people in a lot better shape than me grab use every day.
your workout is similar to mine. I cannot get up on my toes at all (one foot at a time). I try to do the machines but am currently doing only 40 lbs for the inclined toe press using both feet simultaneously. The rest of your workout is similar. the hip abductor (start with knees together) helps but I havent tried the adductor (start with knees apart) since my back therapist had me doing abductors.
I was dx'ed (with my doctor saying "probable CIDP") 2 years ago and have been on IVIG since June 2010. Fortunately with the shoes I can get around ok. But, I too have balance issues while standing in the shoes mentioned. I just find something to lean on or sit when not walking. And, I do stumble occasionally. Guess a fall will be next. no cane yet but see it or walker in my future. Hate to tell my family that and dont tell them most of what we discuss here, it is depressing enough for me but I keep as positive as possible. Still working a couple of days a week as a travelling sales rep in and out of offices. Thanks Joe, mike