by I never realized how much my military service would end up helping so many years later. I didn’t retire from service, I spent four great years in the Army. So I count my blessings, even though I have ALS, because we have help from the Veterans Administration which provides much of what we need to manage this disease. From prescriptions to nontaxable income, from providing a power chair to giving help with buying a vehicle for chair.
I was diagnosed September 2018 and by early 2019 I was using a walker. It allowed me to move around safely for a while and then in August I fell while using it and we had to call paramedics to pick me up off the floor. I fell again later so by September I began using power chair. By the way, I was told by the VA that if it provides a walker to me, it will not be able to give me power chair. Not sure if the person who told me that was correct but you would not want to opt for $100 walker over a multi-thousand dollar power chair.
We bought an accessible van April 2019 in preparation for power chair. The cost of conversion was $35,000 which the VA paid for. The van works great with power chair and allows for me to go out with my wife and family. Please take a look at my bathroom post to extend time on outings.
Going outside the home is one aspect but you want to get around your home as well. Being independent as much as you can for as long as you can is very important for your caregivers. So driving your chair around your home allows for independence, especially bathroom trips. When your hands fail to work any more the VA provides a harness to drive with your chin as well as an attendant control for the back of the chair.
I hope to inform folks on my experience as one who has ALS but also offer hope to those have the disease. Your life is not over but a good support system is needed, like family and the Veterans Administration for me but also MDA and organizations like Team Gleason or alstexas.org. Please contact me at joelanham53@gmail.com if you have questions.