Saturday, 12 March 2016

It's Just A Matter Of Time

I was thinking this morning, as I got ready to get up and our of bed, how much this process has changed for me over the last few years, and at the same time, how little. Getting up is much the same as it has always been. I wake up, slowly sit up, then swing my legs over the side of the bed. It has ever been thus, but this is where the similarity ends.

In the past, I would stand and walk to the bathroom. Now, I transfer to a wheelchair and wheel to the bathroom. Bathroom has almost always immediately followed getting out of bed. That has not changed. How I get there has changed dramatically, and how I engage the process of morning ablutions has also changed dramatically. Different, but the same.

Dressing myself is where the real dramatic change has taken place. The only thing which even vaguely resembles how it was in the past is the fact that I sit down to put on my socks. And even that process has changed, with the addition of compression socks into my life. You put them on in a way that hardly resembles the past process of socking up.

It night, when I go to bed, is when I notice these changes most clearly. Four years ago, I would take off my jeans and pull off my shirt while standing, then sit on the edge of bed to take my socks off. Three years ago, I would pull myself vertical out of my wheelchair, sit on the bed, slide off my jeans, pull off my shirt, and take of my socks.

Two years ago, I could no longer stand, so I did a lift and pivot transfer from my wheelchair on the the edge of my bed. Because I could no longer lift my legs at all, I would wiggle out of my jeans, then fight to haul off my compression socks, the latest addition to my ALS wardrobe. Then my shirt, after which I would lift and drag my legs from the seated position onto my bed.

A year ago I discovered I could no longer do the lift and pivot transfer. It was either the sling, or a transfer board. So I began to use the transfer board to get onto the bed. Then it was a full scale fight to wiggle out of jeans and socks. The easy part was, as it still is, pulling off my shirt. After disrobing, I still had to drag my legs up and onto the bed.

Of late I have noticed something perhaps a bit more disturbing. The transfer board is becoming increasingly difficult. The uphill pull of perhaps 24 inches, dragging my body out of the wheelchair and onto the bed, is becoming an ever building challenge. I'm not sure how long I will be able to do this, to make the transfer with the transfer board, never mind the fight for getting dressed.

One day, sooner or later, the sling will be my only option. Initially I will be able to do it on my own, but not for long. Eventually I will need help, getting into and out of bed. getting dressed or undressed. Eventually I will lose all the strength in my arms, leaving me completely unable to care for myself. Someone else will lift and drag my legs, position my feet, adjust my head on my pillow. It's just a matter of time.


  1. If you get a power wheelchair with a seat elevator, you can always make the sliding board a "downhill" event. That will help a lot. Wile you're at it, get power recline, tilt, and leg elevation as well. Slings suck!

    1. Mr Mat...I have CP and have really poor trunk control, would a transfer board work for someone like me? I currently use a sit to stand, but want to travel more in the future and am too big to lift. Thanks, Hunter

    2. I have poor trunk control as well, so I need a caregiver to help steady and keep me from tipping over. Im not a Dr or PT, but its cheap expense to try it out. If it was me, I'd have a couple people there to see how it goes, and ensure the incline is almost none to slight for your first attempt.

    3. It'd probably be even better to do this with a PT in a safe environment to determine the feasibility, though I would suggest finding a PT with experience with CP.