Jay

Dagmar,

Totally agree with you and Stephen, thanks so much for sharing. All information is useful and warrants further individual review and research prior to subscribing.

however , since i love this forum and all of its members , i will add one more supplement to this list – which by the way is being recommended by my ALS clinic (top 6th in…[Read more]

Yes Denise,

I have Bulbar as well. Yes experience similar problems ,especially when eating in public. When in public , I eat less and when I do try to stick with finger type food – helps moderate quantities as I can keep to bite size morsels.

learn to chew throughly and avoid tiny stuff that lodge in throat and cause a coughing attack – avoid…[Read more]

yes  I am also on Riluzole as well ( why not) . With respect to gait problems – doctors indicated that most patients with ALS develop gait problems with or without Radicava – again hard to tell .

We have to fight this battle with everything we have – faith and attitude being number 1 and 2.

give it a try and see if it how it impacts your…[Read more]

Yes – I just started Radicava 2 month ago. The port procedure was fairly easy – no pain but it will take 4-8 weeks to become 100% firm. I feel absolutely no difference with it in(without needle)  and remain as active as possible – no restrictions whatsoever.

With needle in ( 14 days on) it is a little cumbersome. You cannot get it wet and it is…[Read more]

I was diagnosed 4 months ago – Bulbar – 10 months since onset. My clinic’s support exercise but not to overdo. If you feel tired the next day , then that is a warning sign to slow down. I still work out as many muscle groups ( weight lifting) as possible with the thought to keep the muscles active and responsive.  Cannot tell if it is working but…[Read more]