I am curious what men with AMN are doing to try and maintain their leg strength. As I have said in another post, my legs are very weak, which I believe is due in part to a botox procedure to treat bladder issues. I have used a wheelchair for 11 years, but before the botox procedure (first one three years ago) I was like a "super" wheelchair user in that I could stand up and walk a short distance or climb stairs while holding on to something. In other words, my life was not nearly as bad as a paraplegic. Since the procedure, my ability to do things with my legs has severely decreased and I am not much better off than a para. It could be that this weakening is a natural progression of the disease, but I do not want to accept that. Therefore, I want to do whatever is possible to maintain what little abilities that I still have or (even better) regain some of my prior strength. Any thoughts on exercise routines is appreciated.
Thank you.
Chris Phillips
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cdp71
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Keep positive! For me a cross trainer is a great tool for us as you can keep the legs moving with your arms! I use mine every day and if I miss a day I know about it!
All the best and I hope the Botox side effects wear off soon!
I have been in a wheelchair for three years. I was walking with arm crutches and a walker. But the falls were racking up a toll in broken bones and repair surgeries.
I love the pool. I find I can stand, jump, walk around with an old pair of arm crutches. I play pool basketball with my son. I actually feel closer to my old self. It is a great way to work the arms, too.
But I also own a NuStep recumbent elliptical cross trainer. I own a good set of exercise bands, and a really sturdy walker. I also have a motorized set of bicycle pedals. They are used for days when I feel weak.
Don't forget to stretch that helps with muscle control. Also, make sure your meds are not causing excessive weakness. Too much anti spasm makes you weak. You need some spasticity to walk. Talk to your doctor about smaller more frequent doses instead of lumps in the morning. Really evaluate the extended releases of anything. I have better luck taking the Non ER stuff more frequently.
Set small goals and work your way up. Small achievable goals keeps your attitude positive.
When you find something that works, stick with it, everyday, In my case a big part is finding the brain paths that get things to move. A big part of this requires mental focus.
First meaningful medicine that strengthened my legs was Piracetam.
I still remember the feeling, way beyond any subjective placebo.
I started with 800mg capsules, I buy it by the kilo now.
4-aminopyridine was a revelation, 4-AP-meoh I've posted extensively about.
L-Threonine works to a certain extent, as does Biotin.
Boozing plays havoc with my spasticity, as does high dose Gabapentin, but if I can get the gabapentin dose just right, it's like a miracle. I always end up taking too much.
Modafinil works well for me as well.
Then I wake up the next morning and I'm back to square one
Thanks for all of the comments. I do not take any drugs. The few that I have taken during my time with AMN have seemed to have side effects worse that what I was trying to cure. For example, I took Neurotin for my constant foot pain, but only found that it made my legs very weak and my head feel dizzy. I have a motorized peddler that I use for 15 minutes every morning. It helps get blood flowing through my legs, but I am not sure what else it does. Sometimes I try to push using my own force, but that is very hard. I have used an elliptical machine (i.e. cross trainer) in the past and probably should buy one for my home. I do leg presses occasionally. Also, I have found that stretching helps for reducing, but not eliminating, pain in the legs and feet. Finally, I am hopeful that using functional electrical stimulation will help me, but I have not tried it yet. Good luck to everyone on trying to stay strong. It is a never ending battle.
I have AMN and have been in the chair for 21 years. I have tried everything. I used the stim bike and have tried just stim. I found that the wrong muscles we being fired and stim actually tore down the muscle I had. I do swim and I find exercises that can be done without stim do help. Get to the pool!
May I ask: How do you know stim actually tore down the muscle you had? I ask because I started new leg exercises recently and find that my recovery time is very slow. However, I keep at it but it has occurred to me that perhaps I'm overexerting myself. Were you told this by a medical professional?
I have found that the way my legs react to things is very unpredictable or counter intuitive. I can exercise for a while and get stronger. Then, all of a sudden, I start getting weaker, sometimes to the point of being weaker than when I began exercising. Conversely, sometimes I do nothing and my legs feel stronger.
I have had a PT tell them that too much exercise can be a bad thing. Similarly, my mother (who also has AMN) told me that her problems got worse when a PT had her doing what was apparently too much.
Thank you for your post vgrimaldi. It is nice to hear from someone who has been in a wheelchair longer than I have. If I can ask, what can you still do with your legs? For example, can you stand and maneuver around?
I swear that it wasn't that long ago that I could drag myself and my wheelchair up a flight a stairs. I doubt that I can still do that.
The big thing that I still do with my legs is throw my wheelchair in the back of my SUV and walk around the side (while holding on). That seems to me much easier than taking my wheelchair apart. Unfortunately, it has gotten very difficult.
Another thing that I have noticed is that I can no longer drink alcohol to any excess. If I do, my legs turn to jelly and I really am like a paraplegic. While I know that drinking to excess is not good, I do miss tieing one on every now and then.
I agree that swimming is good. There was a time when I would swim 6 to 8 miles a week. However, my nose started giving real problems (chlorine), and I had to give it up. Now the only thing I do is lift weights. I need to find a new pool that is convenient to work.
Thanks again to everyone for your comments. They are very helpful.
I used to have a full size bronco and put the chair in the back. I was doing stim three times a week and it felt like I could never recover. The legs are gone. I have to move them with upper body strength. The less you use them, the more they weaken. I am in AZ, where are you?
I am in Georgia. That is upsetting that estim did not provide you any benefit. I was hoping that it was something that could help me. I noticed from another post that you have had the botox for bladder procedure performed. Have you ever suspected that of causing your leg weakness? I know that it has made my upper body very weak and can only believe that it has done the same thing to my legs. If that is the case, I might regain some strength some day.
I dove the Georgia aquarium last summer. I have had Botox five years straight. I have never connected to weakness./? I will have to do research. Did Botox three weeks ago and my arms are weak.
Diving is something that I have always wanted to do, but have never gotten around to it. I am sure that the GA Aquarium was amazing. I have a friend who is a quad that has done it several times. Where else have you gone diving?
I have had four botox procedures over three years. After the last one I lost a huge amount of strength. For example, an exercise that I could do 10-12 times I could only do once. Also my bowels seemed to stop working. I am four months out and have only regained a little bit of strength and bowels still give me a lot problems. Admittedly, they bothered me before, but now it is much worse.
Like I said, my legs felt terrible. I could barely stand and, when in a standing position, I could only stay there for a very short period of time. Then, last week, things started to change. It has resulted in my legs feeling much stronger. I am much steadier on my feet now and have little problem putting myself into a standing position. While I am still very disabled and cannot walk without assistance, it is amazing how good this increase in leg strength has made me feel. Strangely, I have no idea what has caused the change. I am still doing most of the same things that I have always done. Of course, now I have much more motivation to exercise. I do note, however, that an increase in strength has happened to me in the past and then subsided, leaving me back at where I started. Whatever the case, I am going to enjoy my increased strength while it lasts.
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