Help Michelle Get a Van to Truly "Live" with ALS

Hello, my name is Michelle, and I was diagnosed with ALS just after my 51st birthday. Amyotrophic lateral sclerosis (ALS) is a nervous system disease that affects nerve cells in the brain and spinal cord and causes loss of muscle control that gets worse over time. ALS is often called Lou Gehrig's disease after the baseball player who was diagnosed with it. The exact cause of the disease is still not known. ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat and breathe. There is currently no cure for this fatal disease.

November 29th of last year marked 2 years that I have been living with ALS. I am currently taking 3 FDA approved drugs intended to slow the rate of progression -- Rilutek, Radicava, and Relyvrio. Last year I could talk, walk with the assistance of a rollator, drive, feed myself, dress myself, and take care of my dog. This year, I can no longer walk, talk, control my neck and body, or move my arms and right hand. I am only able to move my left thumb and fingers enough to control a mouse. I have a feeding tube through which I receive all my nutrition and medication, use a bi-pap machine to help me breathe, have 24/7 care around the clock, and can only be moved using a hover lift. Unfortunately, this also means that I can no longer ride in a car. With the disease taking over, I have to be transported in a wheelchair so that I have the needed support for my body. As a result, I do not leave the house because I don’t have the necessary method of transportation for a wheelchair, and it is extremely cost prohibitive to use medical transport services when required.

In short, my life revolves around this dreaded disease, and I am completely reliant on my caregivers for everything. Which, if anyone who knows me will agree, is the exact opposite of the fiercely independent person that I have been and goes against every fiber of my being.

In addition to this, I have to live with the knowledge that there is no current cure and only one inevitable outcome – death. It is an excruciating weight to bear day in and day out while still trying to live as normal of a life as possible. Each day I pray for a cure and wish that there was something out there that could slow down or stop the disease progression.

Being stuck in my bed day in and out has a way of weighing on you after a while. So, when the prospect of having a way to get out and enjoy life as long as I can came into the picture, it put a spark of hope in me.

So, I ask that you please help me achieve my dream of freedom and be able to truly live my life with ALS by donating for a handicapped accessible van to make this dream a reality.

Christmas 2023

Christmas 2022