Years ago my daughter bought me a Darth Vader bobble head doll with a “Galaxy’s Best Father” plaque. Little did she know how close this would come to reality. Not the “Best” part but the Darth Vader technology assistance part.
There is an abundance of technology and there are many devices to support everyday living for the severely disabled. There are devices to support accessibility, breathing, communication, home automation, entertainment and more. This first post deals with the technology and devices supporting mobility.
The first noticeable symptom of ALS for me was a weakness in my right calf. After a while I was unable to walk comfortably. My foot was dragging. This drop foot issue was corrected with an ankle foot orthotic. The ALS clinic arranged for me to meet a specialist who created a mold of my lower leg in order to customize the orthotic. The specialist showed me a variety of colors and design patterns ranging from childlike cartoons to wallpaper to basic colors. I chose a pattern that looked like carbon fiber thinking that it would look okay with a business suit.
Ankle foot orthotic
The custom fit ankle foot orthotic was lightweight and relatively comfortable. It was easy to clean and had a bit of flex giving me some spring on the supported foot. It was subtle in appearance, had no negative impact whatsoever on my balance and it really helped.
As I became weaker I started to use a cane and eventually a walker. The cane was a plain basic black lightweight metal adjustable support readily available from any healthcare store. At first the knob end was the basic rubber stopper but eventually with further weakness in arms and legs a broader base was needed in order to prop the cane up when sitting down. The broad base made it easier to reach the cane in support of standing up. When it became harder to stand up from a sitting position I started to sit on large cushions on top of a chair. The extra elevation helped make it easier to stand.
Cane and Base
When the cane was not enough I needed a walker. Once you need a walker it means that you probably cannot get up or down stairs without assistance. You need to start looking for accessible ramps. You may even need a ramp to your front door. There are many choices for walkers. The best approach is to try before you buy. Light weight, adjustable height, basket or carrier and locking brakes are probably the features you want. Some models got in the way of my knees when I walked, others did not.
Walker (This Nexus is the one I bought)
Eventually, as my arms and legs weakened, a wheelchair became necessary. I got two: One collapsible that would fit in the trunk of the car the other electric. Both wheelchairs have a comfortable seat cushion. For the portable wheelchair we got a gel cushion, for the electric an inflatable. The seat cushion is important especially if you are sitting 16 hours per day. I was able to use the portable wheelchair until manual transfers became an issue. A manual transfer is when someone is able to help you move from one surface to another. The only way I move now is by hoisting me using a Hoyer lift.
A Roho Seat Cushion (Have this on electric wheelchair)
Electric wheelchairs are expensive. New they can cost between CAD $20,000 and $30,000; used, half the cost or less. Insurance helps. It is best to have your wheelchair professionally fitted. Some people are short-waisted; some people have long limbs; everyone is different. The length of your lower leg will vary and depend upon the shoes you wear. Choose your shoes carefully for your fitting. My wheelchair is a Permobil M300 with controls to raise and lower my legs, my back and tilt the entire seat. The only feature I did not get is the one that raises the seat like a bar stool. The wheelchair is heavy-duty weighing almost 350 pounds (160 kg) so it is not easy to move by hand. These wheelchairs come with the option to install buddy controls in the event that your hands or arms are too weak to control the wheelchair yourself.
Things I did not buy: I did not buy a wheelchair accessible vehicle. Although it might have been convenient the cost compared to taxi fare did not add up. Also, not being sure that I would be able to be transferred manually, I did not invest in a stair lift. We live in a bungalow and I have not been to the basement in about two years. I am happy with both these decisions.
The ramp to my front door.
Technology has granted me some mobility and the ability to control many electronic devices but I have not yet achieved the power of Darth Vader.