[Patricia]

Hi Dogmar.  Sorry that I am probably writing in the wrong space.

I don’t want to receive any more messages about muscle  twitching.  I would like to visit some other topic like learning about nutrition for those people who  have difficulties swallowing.

Thanks,

Patrícia Riascos

[Patricia]

All information and useful tips are great, but we all need to remember what is the stage of the desease. Accessibility takes a different meaning also depending on the desease a person has. Keep in mind that ALS is a rare disease and our needs are extreme compared to people that are wheel chair bound but keep a good strength on the rest of the body.

I am not defending what some places do, like add a holding bar in the bathroom and a hand held shower, thinking the are compliant. Just keep your expectations low or base your plans on advice from other pALS or someone aware or your needs.

I read somewhere about a petition to allow people in wheelchairs to be able to board the  plane using their own chairs. That would be very helpful!…to every one.

[Patricia]

I have another perspective. Given the cascade of changes and the shock after the diagnose, twitching was the least of my worries. I kind of ignore them, they come and go.  I find that the less you dwell on those kind of minor symptoms the better.