Im currently awaiting diagnosis, i see the specialist on the 22nd January.
I am unsure where i am in the progression, i am 48. I have muscle weakness in my thighs and hands/forearms but can do day to day things ok as long as it doesnt involve anything too strenuous as i easily get fatigued so am quite tired at night. I started noticing fatigue about 5 or 6 years ago, although it was much less then. It was a similar time i noticed gynecomastia but my gp said it was due to my amitriptyline. I also started with tremors a few years ago too. I dont suffer from cramps as such, i only suffer from muscle fatigue and the muscle is fine as long as i stop what i am doing. I understand cramps will come a little later and be quite pronounced.
What i do worry about is that i have problems with the bulbar region. I feel like i cant swallow saliva, but i can eat fine. I also feel like i struggle to breath properly. Infact this is one of the reasons i struggle with my exercises as i feel i cannot get the required breath. I almost feels like im going to pass out as i scratch for breath after exercising.
Does anyone have any good exercises to do that will help me maintain and even build a little muscle without doing damage to what muscle i have left.
I read walking is good, swimming, keeping flexible and plenty of stretches. As i have knee pains when bending i assume squats are a no no. Can i do press ups? Sit ups? Can i even use small weights (1kg, 2kg 5kg)
Ive seen the great exercises that Bruce has shared. At present i am still fairly active and wondered if anyone have any specific exercise that will help a little earlier in the progression..
Also, are some apparatus no good. For example i have a pair of hand grips that you squeeze that are supposed to help build strength in my fingers and forearms. I can use them ok but im worried they are doing me more harm than good as they are quite strenuous on the muscles.
I just dont know how far down the line i am to know what is good or bad exercise for me.
Once i have the cag number will that help to tell me where i am in the progression?
ThanksThis message has been edited. Last edited by: Shepster48,
A physical therapist with experience with ALS patients can help design a program for your capabilities.
The number of CAG repeats will do nothing more than confirm if you have KD. The higher the number of repeats, the earlier the onset. It will not tell you anything more.
Walking, biking and swimming are excellent cardio exercises that will help. Exercises to improve your core strength are always good.
I will stick to walking, cycling and swimming then. I'll get my core strong if that will help.
I think mine started around 40 years old. Thats when i joticed the fatigue, breathlessness and the gynecomastia
Location: Chicago, IL
When we are young the window between too little and too much exercise is wide and we gain muscle easily. As we age the window tends to close. In addition to age other things matter. Diet and sleep can enhance our ability to recover and grow muscle. Some stressors like exercise, temperature and fasting can stimulate positive adaptation but in excess or in combination with stressors like toxins and pathogens can overwhelm our capacity of recovery. Our thoughts matter and can help build us up or tear us down.
The more one gets right the easier it is to benefit from exercising without over doing it. You can find appropriate forms and patterns of exercise by doing it. Try to improve the trajectory of your condition by tracking performance and making adjustments and watch for signs of things getting worse or better.
My current strategy is frequent brief high intensity strength training, perhaps 2 minutes every two hours and lots of very low effort activity minimizing idleness except when I lay down to rest. I use a standing desk and keep my body moving gently while reading and writing. For strength training I like things I can do where ever I happen to be without equipment though most days I also do a session from 10 to 30 minutes with free weights or resistance bands. Dropping to the floor and standing back up in a great variety of ways is a favorite. On the ground I'll do sit ups, leg lifts and push ups. After standing I'll do a few toe touches.
I recently regained the ability to go from lying on my back to standing without my knees touching the ground. I'm now trying to do it with only 1 hand touching the ground. I try to focus and make my best effort and then use my second hand just enough to push through when I'm stuck. I keep looking for things just beyond my abilities and try to expand my limits. Every victory no matter how small is satisfying.
I try to find a level of exercise I can sustain without needing days off for rest and recovery. If fatigue lingers and my performance is down in the morning I'll cut back on exercise for the day. If cramps or tremors flare up I'll back off more.
I used to be more prone to abrupt muscle fatigue/failure and have injured myself too many times often with big setbacks. I like to focus on posture and the form of movement and think through consequences of muscle failure of each new activity and look for ways to cut risk. Exercising in swimming pools, on my bed, floor mats and other furniture have all been helpful. Doing leg exercises grasping the frame of a doorway can provide solid support in case legs buckle.
Im liking the idea of these exercises. Once diagnosed i intend to see a physio and find out which of my muscles are struggling. I would like to speak some more about uour ideas.
My worry is even though im quite early in the progression, my legs and arms have always been thin and dont have much muscle on them anyway. Also, im already struggling with very painful knees. I literally get really bad pains even bending a little. Im pretty sure this is due to my core muscles in my thighs not working properly. They are probably already failing even when the rest around them ae still functioning ok for now.
Did you ever have knee pain?
If so, what do you think is the best form of exercise to try and get this core muscle in my thighs strong enough to support my knees again.
A strange thing happens if i do a few squats, the pain in the knee temporarily goes away. I dont know what causes it, ive heard the term cell inhibitor used. Its like the core muscle gets pumped and so during the pumped time can actually support my knee. Unfirtunately once the pumped muscle goes back so does the knee pain.
I am with you in keeping the muscles active, im just scared i may be damaging them while trying to keep the muscle working.
Location: Chicago, IL
I've torn the meniscus in both of my knees and they can give me trouble, especially when tired. I find my posture makes a big difference. If I'm tired and I let my hips and lower back rotate forward my knees click. But when I squeeze my glutes and keep my back straight my knees give less trouble.
I have issues with most of my joints and ways of dealing with each that mostly work. In general relaxed sloppy posture equals trouble. Using a mirror and seeking posture that looks good to the eye, head up, shoulders back, back straight kind of stuff tends to minimize trouble. Seek to make good posture habitual such that your body knows what to do with less conscious effort. Good posture is particularly helpful in high load situations and should be a priority. One of my guides for when it is time to stop or back off is when I struggle to maintain good form.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614