ALS is a Money Pit

PDaddy · 06-03-2009, 11:15 PM

$
First I needed a device to help me turn the key when I was driving.
And a device to help open soda cans.
And light weight plastic cups I can hold

$$
Wrist braces so I can use my computer.
A toilet seat raisEr.

$$$
A sliding shower chair.
A SmartNav head tracker.

$$$$
A shower-chair/commode on wheels.

$$$$$
A power wheelchair [Medicare]
A Dynavox to give me a voice [Medicare]
A van to haul the power chair.
A bathroom remodel.

And more.

trying to stay positive · 06-03-2009, 11:39 PM

You said it PDaddy!

Let us not forget the

Transfer board

Regular wheelchair

Transport chair

Lift chair

Stair lifts

Built up eating utensils

Built up pens

Gait belt

Tons of pillows to make chairs easier to get out of

Hospital bed (on order)

Urinal

Wheelchair ramps (to be built when we move)

Hoyer lift (on reserve from ALSA)

Hmmm, that's all I can think of off the top of my head!

joelc · 06-03-2009, 11:51 PM

LOL Now I know why I am going bankrupt!

PDaddy · 06-04-2009, 12:07 AM

Yeah, I forgot the utensils and the power-lift!

GlenBrittle · 06-04-2009, 02:48 AM

Oh yes , one must not forget that porch-lift/power lift

and the deck that must be built to match the door height to the porch lift

Jennifer51 · 06-04-2009, 07:13 AM

I feel so sorry for you all the other side of the pond.. It is still expensive for us in the UK, but we do get a lot of things through socialised medicine. I have had free grab handles, toilet raiser seat, wheeled tripod walkers, eating and dressing aids, free medication, PEG, food supplies and equipment Loan riser chair. Free transfer boards etc. We have bought our own stairlift. There are many more things we could get help with if we did not have savings. My heart goes out to you all over there who struggle to get your basics when you need them most.

mare · 06-04-2009, 08:29 AM

That's it- we're moving to England!

sharonca · 06-04-2009, 11:34 AM

This week I added a $5k wall mounted lift for bathroom and bedroom. Ordered $500 rolling "tlt n space" shower chair. So far with Van and home remodeling I have spent about $50,000 this year. Thank God for accelerated life insurance benefit.

John1 · 06-05-2009, 10:02 AM

Quote:

Originally Posted by Jennifer51

I feel so sorry for you all the other side of the pond.. It is still expensive for us in the UK, but we do get a lot of things through socialised medicine. I have had free grab handles, toilet raiser seat, wheeled tripod walkers, eating and dressing aids, free medication, PEG, food supplies and equipment Loan riser chair. Free transfer boards etc. We have bought our own stairlift. There are many more things we could get help with if we did not have savings. My heart goes out to you all over there who struggle to get your basics when you need them most.

Our health care is free (i.e. we pay for it through our taxes) but none of the equipment is provided. We have to buy our own wheelchair vans ($70,000), lifts, renovations, etc. Rilutek is free but is of questionable benefit at best. Since medicine can't help us, only technology, our state-financed health system is of little assistance.

feeling helpless · 06-05-2009, 10:34 AM

Quote:

Originally Posted by mare

That's it- we're moving to England!

Don't bother if you have any savings !

Prescriptions are only free once your on deaths door and then when you've gone
allowing an extremely generous £312,000 (crap if you live up north, bloody pathetic if you're a southerner) which your relatives can keep the tax man gets 40% of everything thats left. lol
So having lost a loved one, sold your house to pay the tax man and found a beach hut to live in instead, you can only hope you don't get ill yourself.

If Gordon Brown thinks hes wasting any more of money he knows what he can do !
Personally, I'm moving to America, lmao

When i was a kid my mum loved Maggie Thatcher and laughed at Ronald R.
Now we love Obama and cringe at the T**T that somehow got to be our (cough) prime minister
Trust me stay were you are.... we're coming to you

mare · 06-05-2009, 11:08 AM

The grass is always greener on the other side !

Zaphoon · 06-05-2009, 11:29 AM

As far as the money pit end of things, how about the cost of going through the diagnosis process itself. You know, paying for multiple doctor appointments, various and sundry rounds of testing, trips out of state to specialists, etc...

Zaphoon

(car break-downs and towe bills when on the road out-of-state...)

kylisa · 06-05-2009, 12:42 PM

If my mother would have let us, we would have bought any and all of the things listed above. As it was, my father has bought a transfer chair, borrowed a wheelchair, borrowed a bedside potty, hospice provided the bipap and oxygen (which mom wouldn't even give a chance), and the hospital bed. They provide her medication, Ensure, and the nurse comes weekly. A hospice aid comes weekly and washes mom's hair.
Now, she is bedridden, only her right arm and hand work at the moment. Always a fighter, she now asks for pain meds often.
I hope the good Lord takes her before her right arm and hand stop working.

I am sure ALS is a money pit if you have no resources to draw from. If there is an ALS Clinic near you, they often have a loan closet of many of the items listed. And then, there are those like my mother that refuse to utilize most any helpful devices.... so it don't really matter at all.

paulw · 06-05-2009, 02:02 PM

PDaddy,

Do you use the head tracker with your dynavox?'

Paul W.

PDaddy · 06-05-2009, 05:54 PM

No,I use Eyemax on Dynavox and the headtracker on my PC.