ALS News Today Forums Forums Living With ALS Your ALS treatment plan and daily regimen or routine

  • lisa-bonahoom

    December 17, 2019 at 9:51 am

    Dagmar, as I think you know I have Bulbar Onset ALS.  So I have more mobility than most and I use it!  I dance to fight ALS!  I use Tap for my brain,  and Jazz to retain strength and flexibility.   I walk and climb stairs to try and keep my lung function better, longer.  I eat well, consciously.   My greatest weapon is sleep!  Everything works better when I sleep well.  I do take Nuedexta for speech and swallowing and it appears to help.  I am coming to the end of a successful trial that I can’t talk about, but hope to share soon!  I see the beauty of the world and it’s creatures, and I chose joy over grief.  I love life!   Lisa

  • Dagmar

    December 17, 2019 at 11:37 am

    Lisa — your positive attitude is wonderful. And… we share a mutual love of dancing! You are so right: sleep is essential.

    Do share the results of the trial you are in when it is finished. We are interested in learning more about it.

  • nancy-l-worden

    December 17, 2019 at 11:54 am

    Five or six days a week I do a 10 minute morning workout. This includes leg lifts, breathing exercises, and other  stretches I’ve learned in physical therapy over the years. Two to 3 times a week I ride my reclining trike either outside or inside on a trainer. This helps to keep my legs on lifting. Some days I do  standing balance exercises and at least twice a week I do stretches  and strength building with my arms. I’m really careful with this and if my arms are fatigued I only do one or two at a time. Walking is also important for me and I use a Volaris rollator. The walking helps with balance and stamina.  The more I walk the better I walk. I find if I sit around too much my muscles get stiff and weak but at least one day a week, I try to have a complete day of rest. On that day I take a hot bath and sit in my chair. If I skip my one day of complete rest, I really get worn out the following week.

    I take some supplements and I eat a high-protein diet. I sleep with a BiPAP. I am also participating in the  Biogen Tofersen drug trial for the SOD1 mutation. I have been in the drug trial going on 4  years now and recently received permission to be dosed every two months instead of every month as a travel to and from the clinic was wearing me out. I have seen some improvement with this drug, primarily with my breathing.

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