Lifting Dilemmas- Please Advise

[Guest guest]

If anybody can help me with finding a safer way to transfer please tell

me.

If folks don't want to post on group you can email me at

aashdon@... <mailto:aashdon@...> or email this same

email address with phone contact if you'd like. Any U.S. calls I make

are free for me on my phone plan if anybody would find it easier to talk

instead of typing.

Recently, myself and some of my friends with SMA and DMD are stuck with

only a relative or two as the only person who can lift us. With aging

relatives, divorces, illnesses of devoted care givers, a number of us

are hanging by a thread to be able to get in and out of bed.

A number of us and myself have outside helpers for daytime tasks and

house work but they can't do the lifting.

My own most recent experiences with lifting and transfering is that even

though I weigh 50 pounds, because of the condition of my bones and

joints, my current lifters are my ex, my best friend's widower, and one

of my PCA's husbands.

I'd give anything for a lifting system that would open up my PCA

options. Nobody will answer my PCA ads that say " $12 an hour and

lifting up to 70 pounds required " [the 70 pounds in case I gain weight

back and to have a margin of strength]. We've had no better luck even

when we raised the pay.

Except for a few rare strong female carers though, even after getting

transfered in and out of my chair by the guys at hand, most women haul,

drag, squash, and maul me around during bathing, dressing and bathroom

breaks, until I'm too exahusted and in pain to have any life outside of

basic survival.

For over twenty years I've had nurses aids and PCAs tell me, " I can

lift. I can do it easy. " , then after hiring them it's, " Oh I have an

injured shoulder. " , or " I have a bad back. " . Mind you I ask about bad

backs etc and stress the lifting tasks during my interview process

incessantly. { People will promise you they can spin gold from a glass

of water practically on job interviews I tell you.}

Using Hoyer and Invacre type lifters swing me into the bars, the slings

wraped around me and cracked my hips at pressure points, I can't pivot

or hang in the air with my arms outside of the sling.

I see other folks use hoyers with SMA but the medical care end of

getting the evals and equipment and the goverment to pay for the process

involved is another big medical run around in my life.

Since the early 1980s here's the process-

The doctors tell me the MDA clinics will get me the lifting equipment

needed.

MDA clinics tell me to get the visiting nurses to eval me at home.

The home eval visits involve a dip shit coming to my house with at best

a sliding board and telling me to " just pull yourself " , and " pivot by

pushing up with your feet " ... [groan.]

After I refuse to injure myself, I get palmed off by the VNA to some

local rehab facility out patient PT department, where more dipshits try

to teach me the same routines the visiting nurses did.

The rehab clinics have no clue what a person with SMA and bone disease

needs. All the rehab places deal with are otherwise abled bodied people

with hip, knee replacements and traumatic spine or head injuries deal

with.

I've been searching you tube and the net to see how others use these

lifters. The cieling track models look like a possible solution.

Please advise.