My Journey with MS – part 7

My Journey with MS. Last installment. My other ailment was trigeminal neuralgia. I've posted many things about that so I won't cover that over again.I did have a severe episode of MS spasms. I think I covered that one of my other posts.

My JoIn my last installment we had just purchased and moved into our home in the Glenwood edition on Pepperwood Hill. I was still able to walk some, still able to drive, still able to get from the front of the van to the back into my chair and still able to work. We thought this was a good move for number of reasons. I had expected to work until my retirement age of 67 so we can have the house paid off and keep building my 401(k). I was less than 5 miles from where I work. Of course MS had other plans for me.

The seller of the house, Deron, had quoted us a very good price to add a ramp in our garage. At that time I could not decide which direction it would go. To the right of the door toward the back of the garage or left toward the front of the garage. Since he needed to know which way I had to defer. Later my sons and I were able to construct a ramp that has proven to be very suitable. Before we had moved here I had purchased a Bostitch air compressor and nail guns. Since they were fun to use my sons argued over who got to use them.

We kept a ramp that I had made for the Alburnett house since it was not permanently attached. It fit right in the screened in porch. So now I had 2 ramps. I have a 7 foot portable and folding ramp. We leave that outside. I don’t use it at all really unless we take it somewhere to get into other people’s houses. It is weatherproof so it just sits out there because there really isn’t room in the garage for it.

When we moved here and had the ramps I felt like “we got this now”. I added a rod above the shower and a number of grab bars. I thought this arrangement would last for years. As my MS progressed faster than typical we were constantly adapting and changing things. The list is too long, and too depressing to go through. We lived here for a few years and my driving kept getting more difficult. My ability to get from the drivers seat in the my wheelchair became more difficult. Operating my computer at work kept getting more difficult. My ability to pull myself up with the grab bars in the shower became more difficult.

Almost 2 years ago now I was sitting in my computer and after about 10 minutes of use neither hand would operate anymore. I just sat there staring at my computer. I knew I was at the end of work capability. For years this was one of my greatest fears –. The end of work. Now it was a reality. About 7 years earlier than I had hoped. The transition turned out to be easier than I had expected. My employer was very helpful in understanding. For any long-term disability you have to be off for 3 months. My employer covered my salary with their short-term disability for those 3 months. I can’t say applying for long-term disability and also Social Security disability was easy. It was not impossible and I was approved for each as I became eligible.

About a week before I was done with work I had an eye-opening experience driving. As I was driving along Collins Road extension I approached the intersection with a traffic light that is near Menards’s the light turned red and I put my foot on the brakes to slow down. My foot slipped off the pedal and was stuck behind. I could not pull my foot back. Fortunately one of the 2 lanes was open with no cars. I ended up going to the intersection just as the light turned red. It really scared me though how close it was to a collision. Janette started taking me to work and picking me up. Not long after that I was done working also. So I lost my ability to drive and work very close to the same time.

We found that carpet and my wheelchair are not the best combination. When we moved in here the carpet was brand-new. After a couple of years it was stretched out sticking up like a potato chip. Janette found a suitable flooring and she installed most of the new floor. It seems impervious to damage from my wheelchair.

Bathroom became my biggest hassle. What seemed fantastic 2 years earlier became impossible to use because I could no longer pull myself into a standing position. The shower required a very small step to get into it. This was still too much for me. Since I was no longer working Iowa Vocational Rehabilitation Services no longer would work with me. I came up with a plan for the lower section of the new showers stall with a tiled floor level portion. This was equipped with a rubber sill so a shower wheelchair could be pushed into it.

About a year ago we contacted JVA mobility and they came out and installed a ceiling lift in the bathroom and then one in the bedroom. Equipped with a sling Janette could now hoist me in the bed, put me in the shower chair or help me with bathroom duties. She can still get me out of bed into my chair without it. She can also get me into bed from my chair without it. As my condition worsens it will be there to help. Right now it is indispensable for bathroom duties. Getting the sling behind me is the most difficult part. Supposedly you can leave the sling while I’m in the chair. The leg straps are quite long and neither of us can figure out where they would go to avoid entanglement during the day. Maybe someday we’ll figure it out.

The over the last 4 years of living here we’ve had to modify things we never expected. JVA mobility was really good to work with. Insurance covered the majority of the ceiling lift. They also worked with insurance to help me get a shower chair equipped with a headrest and that would tilt back. The shower chair I had purchased did not have a headrest. I could no longer hold my torso up. Right now this equipment is working suitably. Since there’s no telling how MS will go we optimistically hope this covers it for as long as we can see. Hope is a good thing.