Cate

@Jerry

Are you on Facebook?  There are several ALS groups on Facebook.  We could start a FB group for fALS and start there. I’ll do that today.

Angel, let me do some research and see if I can find anything.  I’ll update you in a day or two.

@ Gideon

It sound like a very difficult situation for both you and your wife, and I’m sure that is an understatement.  Have you reached out to the ALS association or Hospice? https://www.alstexas.org/  Sometimes these organizations can help provide some care and support and answer some questions. I’m sure you are doing the right things for your w…[Read more]

Wow, I am learning a great deal from all of you that are sharing.  So many things that never even crossed my mind. It is amazing how much we can learn from each other.

Amanda

Katie, you are so right!

Kathy,

My family had Hospice care for both my father (ALS) and my stepmother (Cancer).  We used their services for end-of-life care and they were fabulous. The nurse and social worker were so educated, informed, compassionate and helpful for our family.  My parents passed away just 11 months apart so we developed a close relationship with our H…[Read more]

Amy,

Thank you so much for sharing.  Your mom was a valuable member of our forums and she helped many of our members with her input and advice.  When a family can think of others when they are going through such a tremendous loss just shows how kind and generous Marianne’s family is. Thank you for taking the time and energy to raise so much m…[Read more]

Our forum members amaze me daily.  You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community.  It’s a bitter sweet experience to be honest.  I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. Th…[Read more]

Richard,

Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted.  In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You…[Read more]

Shannon,

ALS effects each person differently so the exact path and length of time each pALS has is difficult to determine. Do you know if your husband has a genetic mutation or if his ALS is sporadic?  How has his progression been so far? Has it been limb onset or bulbar? All of these factors play a part in helping you understand and prepare.  H…[Read more]

@Martin,
How long does it typically take for a drug to be approved and then made available in Canada? I didn’t realize that the Canadian process was as long as the USA’s.
Amanda

Cynthia,
I can “feel” so much anxiety, frustration and pain when I read your post. I’ve lost several family members to ALS; however, I can’t imagine watching your spouse or life partner suffering with ALS and then not having access to treatments that are in the trial phase. I understand that the government has a process for approving treatments…[Read more]

@John C.,

That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did…[Read more]