Today on Facebook I saw one MS organization had an article and a question that asked "has MS made you a hermit?" I have primary progressive MS and I would have to say it has progressed, so that is true now. I have become a hermit more or less.
I've been in a wheelchair for a number of years but used to be able to transfer to the driver's chair in my van. I was still working at the time and really came to enjoy being around people. About 3 years ago I could no longer run my computer because of the loss of my hand use and about the same time I could no longer drive. Lifting my legs up from gas to brake pedal became too difficult.
I can still zip around in my power chair and would go out side. My wife would take me to quite a number of places on the weekends and I enjoyed getting out among people. And became very heat sensitive about the time I could no longer work and so the weather made a big impact on my getting out.
Now my disease is progressed and a few years ago I get a different power chair so that the seat and back of the seat can be tilted or inclined. I also have straps to all the into the chair so I don't tip forward because I can't lift myself up anymore at the waist. So got out as often as I could with my wife's help. It was pretty easy because there no handicap spots for my van to park in she could just pull up open the van with the ramp night could drive out. Then she could go park anywhere.
Last December though I was having problems with my right hand. Many times my one hand would get stuck on my chair joystick and I would drive out of control. To avoid this I had the wheelchair people move the joystick control more out of my reach so this didn't happen. Partly because of this and partly because my hand is getting very bad I have been no longer able to drive my chair myself. I had the wheelchair people add a "caregiver control" on the back.
This is required for me to move now that someone drive me around using the back control. Unfortunately it is much much harder to drive my chair from that position then it is from my position sitting in the chair. As a consequence is much much harder for me to go anywhere. We require a handicapped parking place with van access on the side. This by itself limits where we can go because the spots are often filled and for any large events they're almost impossible to find. It takes about 10 minutes for my wife to park and get me out. So it's no longer very simple to just drop me off go park where she can. Because of this problem I would say I've become a hermit. It is sure a lot of trouble now to go anywhere and we have to think about parking. I have found I am fine with it sitting at my computer reading, scrolling Facebook were watching TV. It's become so complicated to go anywhere that I have become a hermit. It become my greatest impediment so far to not be able to drive my wheelchair. I appreciate my wife and sons and their willingness to take me places but I do not enjoy the effort they have to go to. It is easier to think I will just stay home.
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