There are so many assistive devices and tools that you need dealing with ALS. Over the past year, I have accumulated multiple modes of assistive mobility equipment as well as more gear for helping with various day-to-day activities.
At first I started out with just a walking cane to help me balance and that quickly transitioned into a walker or rollator it’s called. Both of these were short term fixes as my balance and core strength became more compromised. Next up I got a knee Walker where I put one leg up on the scooter like device and use my other leg for propulsion. This is one of the most useful items that I have found for getting around our house. I definitely could use the cane or Walker but it would take me twice as long to get to my destination. As my balance continues to degrade the knee scooter will eventually become more of a hazard than helpful so I’m using it now for all it’s worth.
Outside of the house, I first got a manual wheelchair which was customized with my branch of service logo on the back which was a nice touch from the VA. Next they got me a electric scooter which is really nice because it’s variable speed easy to get in and out of and it also breaks down into five pieces that can be put in the back of most vehicles. For longer trips and when I was still going to work they also added a lift system on the back of my Honda Pilot so that I could drive on to the lift and secure the scooter all using hydraulics.
The VA ALS clinic is all about being proactive and getting the things you need before you actually need them so that you’re not housebound or without the resources to live life to the fullest. I recently was fitted and eventually got my electric wheelchair delivered to the house. This is a top of the line electric wheelchair that was highly customized for my particular needs and it’s something I could probably never afford if it were not granted to me by the VA. This unit weighs over 400lbs and is something that I will need much more in the future. In addition to the electric wheelchair I will need a mode of transportation to be able to drive around as a passenger so we have engaged a grant program with the VA and we’ll be getting a wheelchair accessible minivan in the near future. This will allow me to drive up a small ramp that automatically comes out from the side of the vehicle and position myself as the passenger locking into an automatic securing system.
Besides just mobility tools, The VA has supplied lots of other in home tools and gadgets that I didn’t even know existed before ALS. One of the biggest is a bipap machine which will help with breathing in the later phases of ALS. I’m starting to use this to get used to it and probably will begin using it for sleep and eventually we’ll be wearing it 24/7.
As I’m describing all of these tools that have been given to me I’m thinking about other people that I interface with in the ALS community through volunteer work that I’m doing and how expensive this would be without The VA! There are some people I’ve seen on the ALS community discussion boards who have to take out second mortgages on their home to be able to afford the tools they need to live their life to the fullest. Thankfully I have been granted everything I could want and more and I’m so appreciative for the ALS team at American lake hospital who work with me to proactively provide support that I need.
Not all of my assistive gear comes from the VA. My youngest daughter Samantha gave me a wonderful Christmas present this past year. I had asked her to move a stack of books and put them on our bookshelf, and she asked why I was having her move them because I hadn’t read them yet. I told her that it was too difficult to hold the books and turn the pages anymore, I didn’t know if I was ever going to get to those books. So for Christmas ,her present to me was a new Samsung tablet with a remote control page turner that you can use for digital books viewed on the tablet. It was a very thoughtful and appropriate present and it brought a tear to my eye, one because it was so thoughtful and two because I know she understands the gravity of my health conditions.
As I grow out of gear or can’t use a certain tool any longer, my plan is to gift it to the ALS foundation’s durable medical equipment loan closet program. This program accepts any gently used durable medical equipment like walkers, wheelchairs and other items that can be used by other people with ALS. Hopefully this will allow someone else to benefit from the things that I have been gifted but can no longer use.
