Having the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be daunting as one gets older and heavier, especially if carers free-lift. I was free-lifted my entire childhood and well into my 30s.
When I was a child, I learned quickly that bodies should never be shameful and that it was ok for me to ask for help when I needed it. I attribute that quality to my mother who fought before the ADA laws went into effect to keep me in public school.
The school provided aides to help me with things I needed, including going to the bathroom and as I got older, they had to use a lift that the school installed to move me.
A lift allowed me to attend school on my own
I was placed in a body-cast type shell with hooks that were customized to me and chained into the lift each time I had to go to the bathroom. It was tedious, but it gave me the ability to be independent enough to attend school on my own with the school-provided aides.
As a reminder, this was the early 1990s because the ADA was a thing and the technology for lifts back then was very limited compared to now. That experience, however, made me realize how much easier it was to be free-lifted when I needed it.
Free-lifting was an option that worked well for me
Throughout my high-school years, my friends would often free-lift me into their vehicles, and also they would help me to the bathroom if I needed it so I could go out with them and have fun.
I moved away from home at age 18 and my roommates or carers would always free-lift me when I needed it, but I also weighed 100 lbs. so it was not much strain on them or my own body.
After I got married, my husband became my carer and he free-lifted me any time I needed it. I gained weight as I aged and at my heaviest, I was 170 lbs, but I was still being free-lifted.
Constant back and rib pain
I had constant back and rib pain and never attributed it to the jerky movements happening to me during each lift. My marriage ended when I was 35 and I found myself in a care facility, which is a story for another day, but it had a lift and required me to be transferred with it.
Even though I was in a bad place mentally during that time, my body had much less pain, and eventually, I realized it was because I was no longer being manhandled to be transferred.
When I moved out of the care facility, my parents bought me a used patient lift of my own. I bought a high back sling which is stiff to hold my neck since I have no head control, but it fits easily under me when I need it.
I do not sit in my sling all day. My aide slides it behind me and under my butt and then pulls the legs under each leg before crisscrossing the leg straps to keep my legs from sprawling.
There are many comfortable slings to choose from now, unlike when I was growing up, including ones that work in the shower that are mesh to allow water to go through and also full-body slings if someone cannot sit up.
Electric versus manual lifts
The lift I use now is an electric lift and I am able to push the buttons to control the up and down movements, so I feel a little safer in that I control when I actually leave my chair, so if being scared of lack of control is an issue, I would suggest one with a remote!
Manual lifts are also really useful and I have a standard one in case my electric one breaks. The manual lift can break into pieces and it’s easier to transport, and I have taken it on several vacations and a cruise.
There are times I wish I could be free-lifted still, like when I am in a restaurant or club and need to go to the bathroom and my friends cannot free-lift me, but for those occasions, I use a urinal and it works fine. The patient lift has allowed me the ability to have anyone be my carer as long as they are willing to learn how to use it.
Why I recommend a Hoyer lift
There is little risk of back injury to myself or my aide and less risk of falling since I am very secure in my lift. When I first was faced with the possibility of having to use a lift all the time, I was scared because I was so used to free-lifting.
But I would absolutely encourage anyone who is on the fence about using a Hoyer lift to please use it, especially if you have high levels of back and rib pain and want to see if you can get some relief from it.
My spinal pain has gone from a constant 8 to around 3 every day without medication because I am no longer in agony during lifts.
Have you, or someone you know been diagnosed with SMA?