Status
Not open for further replies.

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
$
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

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
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

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
LOL Now I know why I am going bankrupt!
 

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
Yeah, I forgot the utensils and the power-lift!
 

GlenBrittle

Very helpful member
Joined
Oct 9, 2008
Messages
1,530
Reason
PALS
Diagnosis
10/2008
Country
CA
State
Ontario
City
Alexandria
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

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
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

Senior member
Joined
Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
City
Lafayette Hill
That's it- we're moving to England!
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
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

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
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.
 
Joined
Mar 9, 2009
Messages
28
Reason
Loved one DX
Diagnosis
03/2006
Country
uk
State
West Sussex
City
sussex
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 :D
 

mare

Senior member
Joined
Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
City
Lafayette Hill
The grass is always greener on the other side !
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
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...)
 
Last edited:

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
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

Member
Joined
Feb 6, 2009
Messages
25
Reason
CALS
Country
US
State
ny
City
sackets harbor
PDaddy,

Do you use the head tracker with your dynavox?'


Paul W.
 

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
No,I use Eyemax on Dynavox and the headtracker on my PC.
 
Status
Not open for further replies.
Top