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NeedCourage

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Hello to all.

Have any of you tackled the long journey of ALS without a lift?
We are surely at the point where a lift would normally be considered
and/or necessary, but we are reluctant.

I am still able to move my pALS around with transfer boards and a
scooter. He has no lower body strength; little torso muscle, and arms are
weakening. Breathing is the main issue we face and was the first
symptom. We are hanging in there pretty well for two old *arts 78 and 65
battling the beast of all beasts!

Toby is very negative about hoyer type lifts; I don’t know if it’s fear or finances or
more lack of control. We don’t exchange a lot of thoughts aboutthe disease itself or his feelings. He is a sweet quiet man. Motto was: "Never complain; never explain".

Our home is very crowded since moving solely to the first floor of our
small bungalow and frankly I cannot imagine those gigantic ‘grasshoppers’
crawling around here. My legs are constantly badly bruised from bumping
into corners etc., as it is.

He will not be adding a trach or feeding tube … so all I can imagine is that
he will be bed bound. I cannot get him into the car anymore. Obviously it’s just
the two of us 24/7. The whole toileting thing is getting much harder.

I was just curious how someone might become totally disabled and NOT use
lifts.

Thanks to all who even read this!
xoxo
Nancy
 

Atsugi

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I wouldn't try it, Nancy. I can't speak for anyone else, but if I were a PALS, I would certainly want to move around as much as possible around the house for as long as possible. --Mike
 

Gembead

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Hi Nancy, my hubby is almost ready to be in a wheelchair full time now, as he is leg onset and has lost some core strength and arms are getting weak, but we will be getting a hoist as I need to think of my back and how it will make it easier to manage him saflely and keep me safe. Being bed bound will bring its own problems with pressure sores etc...
If finances are the issue see if you can get a lift second hand. You are doing a great job. Love and hugs Gem
 

lgelb

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Hi, Nancy,
We got a ALSA loaner lift for the duration of Larry's need. Did you check with yours? I see the one we had would be $1200 on line.

We have a fairly small apt. so I would measure max width and depth, but ours, the HLA power version, could be 24" wide w/ legs closed and was always 41" deep (long). But when you are doing a transfer, of course, about half of it is either around a chair or under the bed.

I understand no PALS, esp. a male, will be a fan. I still remember Larry's tears when we first used it (after trying for an hour to get him out of his recliner). I had an OT lift me beforehand so I knew what it was like. But the first time Larry used it, it was in extremis.

The lift will enable him to use his [future] wheelchair/current scooter in and outside, use a toilet or a bucket [our only option due to our bathroom config] and get in and out of bed. If your legs are already bruised, how is continuing to struggle going to help? And who is going to help him if you hurt yourself?

We didn't have a van, so it was walking somewhere or transit, but I can't imagine not going anywhere. And Gem is right that pressure ulcers thrive in the bedbound. To be blunt, if you don't get a lift, you are saying that life is over for him. So I think the answer to your question is, unless the person lifting can readily lift/hold the weight of the PALS, you don't.

So I would talk with him...anyone around you, or anyone here, who has used a lift would also be happy to talk with him in a nuts and bolts way. Has he seen YouTube vids? Can you, maybe at clinic if he's not ready for one in the home, have someone show him by lifting you? It is a tool, becomes routine -- better than not moving while you still can.

Best,
Laurie
 

gooseberry

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Nancy we are about at the same spot. Steve can still shuffle a couple of steps but then he can't breathe. His legs, core , etc are going, going.... I have yet to use a liftbut plan on it. He doesn't like the idea but his weight is 245. I can not lift him. He is 9" taller than me. The physical dimensions do not work out. Steve is not crazy about the idea either because it is one more loss and a big one but I came at it from a purely safety issue . That worked for us.
 

NeedCourage

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Thanks so much.
You are all right, I'm sure.
I'm so exhausted it just seems tracking down
another piece of equipment,
choosing the proper one ...
and dealing with insurance and
learning how to use it alone...
is too much.
Sorry - but true.
 

NeedCourage

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Oh Mike... BTW, we CAN see every inch of the usable house from any spot - it's like a small train car so there not much house to see or use that I'm not utilizing.
 

affected

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I can't imagine caring for Chris without a lift - it was incredible how easy it was to use, how much difference it made for us both in getting him positioned safely.

It was the only piece of equipment (besides the recliner chair) that Chris liked.

I know it's hard Nancy, but you can't physically do this, it will make an incredible difference.
 

Diane H

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Indiana
If space is the issue you can get an overhead lift that mounts across the bed on two poles. It requires no attachment to the walls or ceiling and takes up no space except for the few inches for the poles. It is easy to install by your self. There are many brands available. Google overhead patient lifts, freestanding. The price is probably triple a hoyer lift but it is easier to use.
 

NeedCourage

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12/2013
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Tillie, I trust you... I will make some phone calls Monday.
xo
 

Nuts

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You need a lift. Period. Besides not being able to move him when he gets any weaker, you are going to hurt yourself. Like many other pieces of equipment, it's safest to have it in place and practice, even if on yourself, before you need it. My husband resisted it until I finally told him he'd have to move himself across the transfer board without my help if he insisted on not using it. That lasted a couple of weeks, but he's finally realized that the lift is easier and doesn't exhaust him. I'm also getting better, much better, at moving him. It just takes practice. One thing that helps us both at this point (with the ceiling lift) is him having the control. He raises and lowers himself, and moves himself along the track. I just hook him up and guide him. HOpefully, by the time I have to do it all myself I'll be much more skilled.

It's tough, staying ahead of this monster, especially with such limited space. Hang in there===we're here.
 

zoohouse

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958
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CALS
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Country
CA
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B.C.
A lift is a must, and once you use it for a few days you both will wonder why you waited so long. It gets them out of bed and in a better position for hygiene, or into a recliner or power wheel chair. It is much easier on your back to have them up to change the linens, and I dare say easier on them as well. I hope you can find a way to make it work.
Paulette
 

NeedCourage

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Lost a loved one
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12/2013
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Paulette,

Your mention of a Power Wheel Chair brings me to another dilemma:

ALS donated to us a regular transport PUSH type WC, lightweight - no power;
and a "Golden" electric scooter type chair which is supposed to be portable
since it comes apart into 4 pieces. Unfortunately I cannot lift the parts so
we are not able to use it as such. We use it in the house to move from chair
to bed to bathroom.

How does one get on the individualized PWC's I keep reading about how they take
many months to receive and cost ten's of thousands of dollars. Is this something
medicare helps with? Does the doc prescribe it? The scooter is fine since Toby
can sit upright (a bit wobbly but still upright).

I've often wondered how patients obtain and afford(!) these chairs that cost almost
as much as a modest house in this area of the country!

Thanks a bunch if you feel like answering...
Nancy
 

NeedCourage

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Joined
Feb 22, 2014
Messages
72
Reason
Lost a loved one
Diagnosis
12/2013
Country
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State
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NUTS:

Love your spunk ... I need some of that !
 

Nikki J

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PALS
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04/2014
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US
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MA
Hi Nancy
Do you go to clinic? They should be helping you with all of this! Yes medicare should pay their 80 percent for a power chair. If you have supplemental they should kick in as well. There are important add ons to the chair and the prescription should be written by someone who is an ALS specialist both to get the right add ons and to phrase it correctly. It does take time so please call the clinic and get things going. Don't wait for an appointment. Go in sooner!
Please post more so we can help you
 
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