Let’s continue talking about how one might live with ALS. In part 1 of TOTT, I discussed some of the items that I have and use as part of my life with this disease. This time , I want to expand into the living space. I hope that what I write here might shed some light on the vast options available to us to help us maintain our independence as much as possible. Caregivers benefit, as well!
Once again, I will preface this by saying that I have the amazing privilege of VA assistance to obtain most of these things. It should go a long way to highlight the challenge of this disease and the high financial burden it places on families. I promise you, I would likely not have the means to obtain all of these things if it were not for my veteran benefits.
At the time of my diagnosis, we were living in an older home. One of the biggest concerns is accessibility of the home. After going through the home with an adviser, we determined that the work needed to make our home accessible would be extensive. One of the options available to us was to sell our home and build a new home with accessible features in place. With a prognosis of 2 to 5 years , it was a risky investment, but the pros outweighed the cons.
The VA provided us with their minimum requirements for an adapted home and that was the basis for our design. Features include: wide doors to the areas I frequent, wide hallways and an open floor plan. I also had a door placed in my bedroom which allows egress to the outside directly. At this door and the front door, we had the builder build up the walk to have a ramp rather than a drop as you step out. the VA then provided customized rubber ramps for inside the door thresholds as well as a ramp into the garage.
Within the house, we went with tile throughout to eliminate the tripping hazard and to facilitate rolling , i.e. wheelchair , walker and the various wheeled equipment. Our bedroom is very big to accommodate equipment and a hospital bed, if necessary. Stepping into our restroom, again, we allocated extra room to be able to maneuver. The sink is raised with space to roll under in a wheelchair. Our toilet has space to transfer with grab bars on the wall for safety. We opted for a walk in shower with no tub. VA required a shower large enough to maneuver a shower chair and perform transfers. We met that requirement as well as grab bars. We also have a detachable shower head, which is highly recommended.
Environmental control is not what I would deem as necessary, but it can make life a hell of a lot easier. EC can be as simple or as complex as you like. In a nutshell, think Smart Home. We have a variety of technology installed in our home. Smart light switches, a couple of smart plugs, Nest thermostat. I have a Logitech Harmony Hub for my television. All of the smart tech is run through a SmartThings hub. Everything is then brought together with Amazon Alexa. It allows for us to control our environment by voice or through my eyegaze. A nice touch that we added is automatic door openers. The push button type you commonly find around town . They were able to integrate them into our system, as well as my PWC so that I can open and close the doors with the joystick.
As you can see, the possibilities are endless. Technology is making it possible for disabled people to live with more independence than ever before. While there are no right or wrong ways to accomplish creating an accessible environment, you can see the thought process of what into mine. At the very least ,I hope you can come away with some ideas to help you to LIVE with ALS.