Kathy stitz

Hi Susan,

Is the cost you listed for a one month’s supply or for longer than this? Thanks!

Amanda, Thank you for your help.  This is a difficult subject to think about and come to terms with but I guess it’s best to look into it in order to be prepared for the end-of-life.  Thanks again.

Amy, thank you so much for your post and I’m so sorry for the loss of your mother.  ALS is such a horrible disease and causes so much suffering.  We will miss Marianne!

Thank you Dagmar for providing the link to Marianne’s obituary.  I do not know how to do that so I appreciate your help. RIP Marianne

Ok thanks Ginger.  Take care.

I have a few containers of high calorie Boost each day and water or Gatorade several times a day.  Sometimes I try to eat some pudding or mashed potatoes.

Hi Ginger,

Thank you so much for your post and for your suggestions.   I am not married. I live with my mother.  That’s wonderful that you have a supportive husband and that you are doing activities that you enjoy.   I was diagnosed with ALS 2 years ago and it is definitely life-changing.   Take care and best wishes to you and to all pALS and th…[Read more]

I agree that not being able to eat or talk are also very big adjustments to have to make when living with this terrible disease.  I also have a feeding tube and miss being able to eat.  I have lost a lot of weight.  It’s also hard to be at family gatherings or out with friends and everyone else is eating and enjoying their food and I’m just si…[Read more]

I was diagnosed with ALS 2 years ago, in June 2020.  I am now 45 years old. For me there have been so many challenges and it’s hard to single out one thing as being my biggest challenge.   I guess I would say emotionally with accepting this diagnosis and dealing with all of the feelings that result from it like depression, anxiety, anger, gr…[Read more]

Andrea recently completed her marathon goal. Congratulations Andrea!

How is the care for ALS different in countries outside the United States? Is that common that they don’t have ALS clinics or ALS Associations and it’s difficult to get any help?

That’s true, Richard.  Many people don’t even know what ALS is. Unfortunately people usually don’t focus on caring about or supporting a medical condition unless it impacts them personally where they have it or a family member or friend have it or have passed away from it.

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]