Kathy stitz

Jim, doctors are familiar with Scopolamine patches.  I had tried them without success.  I’m happy to hear that the Scopolamine patches worked well for you.  However, it just depends.  What works for one pALS might not work for another pALS.  It’s still important to share ideas and information about what has helped or not helped.  Maybe somet…[Read more]

Unfortunately there won’t be a cure in time for any of us who have ALS now to benefit from it.  This has often made me angry.  I’m so sorry that your husband has ALS and that you are afraid of losing him. We all have the fear of losing our lives to this horrible condition.   At some point that will happen since there is no cure for ALS and it get…[Read more]

I agree with the advice that has been given above but would also like to add that I sincerely hope you don’t have ALS.  In my opinion, the hardest part is actually being diagnosed with this horrible condition and your life after that is never the same.   You know you’ll never get better and you’re totally aware of the progressive loss of fu…[Read more]

Thanks Dagmar!

Hi John,

There is another federal program called Supplemental Security Income (SSI).  This program helps those who are disabled but did not have enough work credits to qualify for SSDI.  You get a payment each month with SSI and you also qualify to receive your state’s Medicaid.   However, there are asset and income limitations to qualify for SSI…[Read more]

Lisa, I’m so sorry for the loss of your sister.

We will be thinking of you on Tuesday then! Let us know how it goes when you have time.

Hi Lisa, We will be thinking of you on Wednesday for the filming!  Hope everything goes well for you.

Thank you so much Amanda!  I will wait to hear more about this soon.

Thank you for your suggestions, Jennifer, and best wishes to you.

Marcie, I am so sorry about the loss of your daughter.   How old was she when she was diagnosed with ALS?

Kathleen, I understand your frustration and sometimes I feel angry at the doctors for not having a cure for ALS.  I agree with Dagmar that all we can really do is try to take care of ourselves mentally and physically as best as possible.   I’m not saying this is easy because it’s extremely challenging.

Thanks for your post, Marianne.

Another thing to consider is the type of ALS that you have.  Most people have limb-onset which tends to progress slower than bulbar-onset.   Bulbar-onset tends to be more aggressive and progress faster.  In my opinion, it is worse to have bulbar-onset since it affects your eating and speaking fairly quickly and often requires getting a feeding tub…[Read more]

Congratulations Lisa and best wishes!

Thanks so much, Duane.

Gunnar, was your question: What is an AFO?

Lisa, thank you for the information and for your suggestions.