the difficult journey of ALS

Dear friends,

We’ve reached a point on our journey where we need to ask for a little help. As many of you already know, or may have surmised, over the past several months Peter has been experiencing some serious neurological health issues. On September 6, 2023, our world really got flipped upside down when Peter was dealt a life altering diagnosis… ALS. Three letters that no one ever wants to hear. Three letters that have forever and tragically altered the course of our lives.

For those that don’t know, ALS is a terminal motor neuron disease. It does not affect intelligence, thinking, seeing, or hearing. But it does affect voluntary movement. As the disease progresses, people suffering from ALS lose the ability to control their bodies. They lose the ability to stand, to walk, to get in or out of bed on their own, to use their hands and arms, and eventually, to eat or even breathe on their own. This is a degenerative disease and there is no known cure.

Up until now, we’ve been managing. But as we take stock of the expenses to come, the specialized equipment, transportation costs to appts, the PSW support, the therapies needed to help with Peter’s quality of life, we realize that we have not only an emotional mountain to traverse, but also a financial one.

Peter has been unable to work for the better part of this year and I have had to take Caregiver Support leave from work. With our incomes halved, things have been tight. We’re really not sure how we’ll tackle what’s to come.

We are two people who do not want to ask, but have come to realize that we need to reach out for help. We are on a journey we never could have guessed would come; would never have wanted to come. But here it is. It will be our shortest and roughest yet. Peter has always been my rock, he has supported me through everything life has thrown at us. Now he needs the support. We hope our community can help.