Thursday, 5 May 2016

PWC Practice

Yesterday afternoon Katherine and I went for a walk. Actually she walked. I motored along with her using my power wheelchair. The PWC makes it so easy for me to pop over to the mall, wander along to the local park, or go for a walk with Katherine. The main thing the PWC cannot do is go with me in the truck. At some point I will have to come up with a solution for that; either a different vehicle or some sort of trailer or platform at the back of the truck. Both of these solutions, however, recognize that this will happen at a time when I can no longer drive.

When we got back from our walk, I decided to stay in the power wheelchair for the evening. I wanted to see what it was like to use the chair indoors, a kind of experiment to see which was easier, using the manual chair or using the power chair. My main goal was to find out what the capabilities and limitations are, since one day soon I will be spending most of my time in the PWC, rather than the manual chair.

Several interesting discoveries arose out of this experiment. First of all, it's more difficult to transfer to the couch, sufficiently more difficult that I didn't even try. The couch is very low and this chair is higher than my manual chair. So I spent the evening in the chair, while Katherine sat on the couch. I didn't like that; I prefer to sit on the couch with her cuddled up next to me.

Secondly, I found that moving around the apartment was just as easy as it is with the manual chair, with the notable exception of getting onto the balcony. I didn't actually try; it was easy enough to assess that situation without actually doing it. I might try it today, but I can see the challenges immediately. On the whole, however, the power chair is relatively easy to use indoors. As an added plus, the lift option on the chair allows me to reach most of my upper cupboards, and that's a real plus.

The third discovery was one of mixed blessing. My PWC has a tilt option; I can lean backwards a long way. This feature allows me to take the pressure off of my tailbone, relieving the pain that is with me virtually all the time when I sit, which I do pretty much all day. On the other hand, leaning back makes it more difficult to operate the remote for the TV and Blu-Ray player, defeating my recent purchase of a new TV stand, unless I am in the standard, or near standard, seated position.

Fourth, we discovered that the transfer on and off the bed is substantially easier. When I went to bed, I parked the power chair beside the bed, raised it to a matching height, and simply slid sideways. The transfer in the morning was mostly the same, the only real difficulty coming from my skin sticking to the board, something which happens either way, and from my testicles snagging on one of the leg catches, something I noticed and adjusted for rather quickly.

The last major observation is the most inconvenient. I cannot easily transfer from the PWC to the toilet. The transfer onto the toilet requires a drop of about 3 inches. I can make that work for me. The transfer back requires a lift of that same 3 inches, something I clearly cannot do. Katherine and I discussed various options, including getting a portable lift system or perhaps putting a permanent mounted lift in the bathroom. In the end, we decided that transferring to my manual chair for my morning ablutions would likely be my best option.

All of this experimentation is predicated on one basic acknowledgment. I am getting weaker in my arms. At some point, not too soon I hope, I will be unable to easily wheel myself around my own apartment. I'm already noticing reluctance on the part of my arms to do so. At some point, not too soon I hope, I will have to use my PWC, even at home. So I need to learn about it now. I need to be ready for that day when ALS changes my life once again.


  1. Hi Richard! Could SO relate to all you said. I skipped the manual wheelchair altogether and went straight to PWC with van. LOVE the van, tho it was expensive. I also don't know what I'm ever gonna do when I lose strength in my arms!! Right now still managing alone but will be moving back in with parents. I've had ALS for 2.2 yrs, am 61. Hang in there!

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  4. Hi husband has ALS...I just discovered your blog in the MS magazine article that you wrote. How wonderful that you are providing a place where people can share experiences.

    Like Carolyn, Bill uses his power wheelchair all the time --indoors & outdoors. We are fortunate that we live in a "city" environment as we have sidewalks. This make getting around much easier for him. We are able to "ride" and walk to neighborhood restaurants & a couple of his docs offices. We also purchased a wheelchair accessible van which makes getting around really great. He is able to "drive" up the side ramp and "lock" his chair in place while I do the driving. Expensive yes...but thankfully we were able to do it.

    We recently purchased a "sit to stand" lift which has made transfers so much safer for him and so much easier on my back! Using the "board" didn't work for his transfers. His legs and right arm/hand are weak and are not really functional. He no longer can write (he's right handed) and I also must help him with cutting certain items in his plate. He is learning to eat with his left hand. We are hoping that it will be a long while before his left hand goes.

    We also found another use for the lift, we can use it to help him on and off the toilet. By the way, we have one of those "smart toilets" (ours is made by Toto) that have all sorts of "jets" for washing and drying. This is huge for personal hygiene. We had installed this when we were bldg our new home prior to Bill being diagnosed with ALS. Who knew how helpful this would be for him. However, we have found that it is a bit low. We can't use a "raised toilet seat" as that would make the "jets" not the right height to function properly; as such, we are now looking to "build" a base for the toilet so that the whole thing will be elevated and thus not throw the "functions" out of kilter. Want to be able to use this as long as possible.

    We are discovering that we must make adjustments as the disease progresses. We are blessed that we can have a CNA (certified nurses asst) come in everyday to help. It would really be extremely hard on my back & my mental health.

    I shall add you to my prayer list that you continue to live a life that is productive & happy. May God bless all of your readers who are struggling and living with ALS as well as their caregivers. Thank you for sharing your life experiences with ALS...