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  • Jay and Profile picture of MaryMary are now friends 3 weeks, 3 days ago

  • Brian Torgunrud and Profile picture of JayJay are now friends 1 month ago

  • Danielle Uskovic and Profile picture of JayJay are now friends 1 month ago

  • 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]

  • Jay replied to the topic Exercise and ALS (Continued) in the forum Living With ALS 8 months ago

    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]

  • Jay became a registered member 11 months, 1 week ago

    • Hello Jay, Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS; I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. The easiest way to see what is current is to click…[Read more]

    • Hello Jay, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]

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