[jeff-derby]

I believe research into how we can extend a person’s ability to breathe after the muscles are too weak. Equipment, drug treatments that can improve a person’s quality of life over having the standard tracheotomy. As the research for a cure continues, weak arms, legs, will not kill us but unable to breathe will, so if we can find better options for people  to live longer lives they can be around for the day a cure is found.

[jeff-derby]

Hello Lisa,

before I was diagnosed with ALS I was playing old timers hockey in the winter and golfing/biking in the summer..July 2018 when I got the news I was feeling very fit and figured I could exercise at a level that would slow the progression. Over the past 2 !/2 years I have changed the exercise program from weights to bands and less resistance on the stationary bike, walker…what I have learned is some exercise on the remaining muscles helps keep them longer. For me nerve twitching starts in an area before muscle atrophy begins, this can be many months…I was told by my neurologist that the twitching is part of the disease, and indicates the nerve and muscles are still active…when the twitching stops it is because the nerve has disconnected from the muscle..so I learn to live with and appreciate the twitching. hope this helps a little.

[jeff-derby]

I also get Leg nerve twitching at night when I lay down. My pharmacist suggested taking 1/2 a clonazepam with a baclofen….I’m  not a doctor so please do your own research but this combo I use when the twtiching is really bad, it does help..

also use CBD or essential oils at night before laying down…,  also would say it helps a little…have tried magnesium life the brand “Calm”  again it helps a little. I believe the trick like everything with ALS, it is the cocktail of treatments, drugs,supplemments that help you…

Stay safe

Jeff Derby