Your ALS treatment plan and daily regimen or routine

[Dagmar Munn]

What activities  and treatments have you been doing and using to treat your ALS that you consider to have resulted in the most benefits or positive outcomes?

Please share and tell us more about them.

[Lisa Bonahoom]

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 Munn]

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]

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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