I saved my voice on acapela.which app is easiest to use with it? I tried T D Talk. But I couldn’t find the phrases that I recorded on it.

When I went to the ALS clinic, the social worker asked “What gives you joy?”.  I thought about it and answered, “my grandchildren “. They do. But now I can’t play with them like I used to .like being outdoors riding bikes , writing on the driveway with chalk,  running or walking after the 2 year old. After thinking about it,  next time she… Read more

Bob, Just wondering what your symptoms were in 2010 when you were diagnosed.

It seems like most people have symptoms on the left side first??

I would get cramps in the back of my thighs when lying down and bending legs back in bed. My left foot started slapping the ground when walking. Prior to that I had surg. For carpal tunnel and tendon transplant because I couldn’t pinch with thumb & index. Another surg because my index was floppy. The physical therapist suggested neuro check… Read more

Hi. Thank you to everyone for replying to my question. I receved my Relyvrio yesterday and am waiting to start after the weekend because I was not sure of side effects. I took Riluzole for 2 months but stopped because I started  having festiculations jumping all over my body plus fatique and knee pain. I startedRadicava ORS . My balance… Read more

Thank you for replying.

Has anyone started taking Relyvrio? Any side effects?

Please answer a few Questions concerning having physical therapy: Would you get a prescription from primary care doctor or from a neurologist in order to obtain physical therapy? Do you go to an ALS trained therapist or do you think that all therapists would be able to treat ALS patients? How about if ALS clinic does not recommend… Read more

Has anyone started taking Albrioza? I would like to hear how it affected you and also about the side effects. Thx.

I am considering an afo due to foot drop. I walk better barefoot than withshoes  and a brace to hold my foot up attached to shoe laces of tennis shoe. Its more difficult to get standing from sitting on a chair with the shoe . With afo how difficult to get from sitting on a commode to standing?

Susan, i am happy to read about your experience with your meds. I was diagnosed feb. 28. But had symptoms prior. I took riluzole for a few months and experienced twitching all over my body, pain in my ankle, that which I hadn’t experienced before.. Also fatigue. I was put on Radicava ORS. I took it for 3 months. After the first week my balance… Read more

Thanks for your responses to my question. Your answers have helped. I was using a cane and after a couple falls, I have given in to the rollator.I have drop foot on left and I have had a few falls; always attributing them to: my shoe got caught on the rug, or my shoe got stuck at the bottom of the stove as I was trying to turn, or my barefoot… Read more

When did you know when  to “give in” and start using a rollator or walker?

Physical therapist did suggest doing exercises on my own, ie. walking, recumbent bicycling, stretching.

No. I inquired about P.T. At the ALS clinic at the Cleve. Clinic.  The physical therapist and the dr. There did not recommend it. The physical therapist stated muscles won’t be built up, all therapists are not familiar with als therapy, and if the muscles are overworked, they will break down more.