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Heather Mills - Amputee Forum
Ally

A disabled-friendly house

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Hello all,

Recently I have noticed a growing number of partners and family asking how they can make a new amputee's life a little better when they come home for the first time.

How would you do it now that you know what to expect?

I'd like to write an article on my website about this. My experiences won't be enough, and not the same as everyone else's.

Railings in the bathroom, non-slip floors, loose carpets, ....... ?

Impossibly cute pyjamas, a not-to-heavy duvet, tissues and chicken soup .... ?

I had a barstool that my ex-husband jimmied - put wheels on it so I could zoot along in the kitchen. Although I wouldn't recommend that because I took so many tumbles I'm surprised I didn't break my damn neck.

Thanks guys,

Ally

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Hi Ally,

Portable ramps can be used if stairs are a problem

Anti skid mats for the floor of the shower

Enough room in the bedroom to get around

No mats at all anywhere in site

Stupid bits of furniture which are totally unneccessary which constantly get in the way.

Fantastic food nothing like what they give you in hospital/rehab

Mel.

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Hi Ally,

This is a great idea! My contributions are...

* No rugs or mats or highly polished floors

* Make sure there's enough room for a wheelchair turning circle

* Make sure people put the shoes, boots, clothes, bags away & that they don't leave them lying in the middle of the floor - teenagers & husbands are usually major culprits! ;)

* Bars/rails around the toilet & raised seat if needed

* Grab rail (just a small one) near the bath. OT's recommend bath boards & bath seats - they work for some, but I've never found them much good

* Shower head that you can move to a lower position

* Light-weight bed clothes

* I can't use full length PJ's as my legs get all lost & tied up in them - I'm AK & BK - shorts would be better.

* You need to be able to at least make yourself a warm drink, so make sure that a kettle...etc., is within easy reach.

* The controls to any TV DVD player...etc., are left within easy reach

* Keys (to anything) are left within easy reach

* Make sure there's enough credit in the mobile/cell phone & keep it with you - even if you don't fall, it'll make you feel more at ease

* Train any household pets to run away from you, when you shout the word 'MOVE' :D

AND, as Mel said

Fantastic food nothing like what they give you in hospital/rehab

Lizzie

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Hi Ally:

Ahhhhhhhhhhh…… your subject is a complicated one. I believe though, that your statement is for when an amputee “FIRST COMES HOME”. I can only speak of personal experience.

In this country…………first you are buggered………then you are sent to rehab for a while………….then you become a “day hospital patient”. It is at this time that you are at home and still attend rehab until the day they are finished with you and you are then on your own. My comments will be around the day in time that you are now a “day Patient”.

I am an extreme case but I think that most amps go through the same processes and stages regardless of the amputation. I only speak for a lower limb(s) amputation.

Therefore………………..

Must haves:

• A way to get in and out of the house. Whether this is a team of others to carry / aide you, or an in place ramp or a mechanical lift.

• Ensure the main door, the door to sleeping and bathroom facilities are wide enough to accommodate the wheelchair (if being used).

• Bathroom facilities such as a commode (‘cause you haven’t figured out how to be that normal yet and you’ve been pooping for months on such a device)

• A system such as a bath chair or a shower configuration for body cleansing.

• A big comfy place set up so that you can plop yourself into while you start to figure out the rest of your life.

• A soon to be body servant (wife, friend or husband) until you figure out how to do things yourself.

• Perhaps installation of the odd grab bar – stop and really think about where you want it before installing them. If you don’t, sure as crap, you’ll be ripping it out in a week or two to put it in another place ‘cause then you realize that’s where you need it for now.

I am sure that there are some other minor “must haves” but I think the above covers the basis human needs for when an amp “first comes home”.

I will let this thread ride for a while, but I would like to continue this thought in time if you allow Ally. I would then add comments on:

• Real life suggestions for the “seasoned” amp

• Building a disabled / wheel chair accessible home

• Ramps, etc

ED

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Fantastic! Thanks Eddie, Lizzie and Mel.

And yes of course Eddie, we can keep this going for ages. All these little things can make such a difference to a new amputee. The difference between feeling useless and hopeless, and semi-self sufficient. Such important stuff.

Love the MOVE command. My dogs learnt that way early, but I would never have remembered to include it!

The ploppy chair, the soon-to-be body servant...

And building ramps - yip - definitely a good one.

More more more!

Sigh....

I love this forum!

:)

Thanks guys!

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Train the humans you live with. I still find water on the floor after one of them has had a shower. And they move things and then tell me they will put them back in a minute which tuirns into a half hour.

What modifications would be useful for upper limb amps?

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This is the first installment of “building a home” for the disabled………specifically as an amputee.

We had the fortunate (later to be unfortunate) experience of building a home to accommodate me………now and in the future. Prior, we owned a two story home that was deemed “unacceptable” for a person like me by the insurance company. So we sold it and built a bungalow home. The insurance company was responsible only for those items recommended by some “expert”………….the rest I paid for at today’s prices.

::: Ramps and Stuff :::

Getting in and out of the house

Because I was then a wheelchair user and someday, I guess, I will be again; I needed ramping and lifts to get in and out of the house. Since we were investing our dollars in the home, we rapidly decided that we did not want to create a “disabled looking home”. By that, I mean, a home that did not have a big wooden thing hanging out the front for all eternity. My ramps were integrated into the over all landscape design and are decidedly, permanent in nature.

In my opinion, the installation of ramping needs to be either temporary and removable, or permanent. I say this because in no time, a functioning leg amputee will no longer use the ramp ‘cause he / she is using their leg or………..the leg amputee has given up and will use a ramp for all eternity. Today I never use any of these ramps and cannot foresee that I ever will. However……once again………the “expert” recommended them.

In the garage area, I have an installed mechanical lift for a wheel chair. I also now have a set of hand rails on the stairs of this area. Today, I never use the lift. I always use the stairs. The lift now stands useless until the day I may need it. Once again, I cannot foresee it being used but………….the “expert” recommended it.

All doorways to the house are 36” wide doors to allow any sized wheelchair in. Additionally, they are all “low thresh hold” doors that, again the “expert” recommended. I would never recommend this type of door to any one. Sure there is no wee bump to drive over but they play hell on any door mat.

At my cottage, we built a “permanent” wooden ramp to spec. It cost me a couple of thousand dollars for material. I used it once. Last week we tore it off.

The image is of my permanent front ramp of the main house.

ED

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This is the second installment of “building a home” for the disabled………specifically as an amputee / wheelchair user.

::: The Bathroom :::

I am most proud of our bathroom. It was self designed with hints from the experts. It does not look like a “cripple lives here” bathroom.

The Toilet:

There was no way in hell I was ever going to accept a wonky looking toilet……………no raised seat………….no commode look……………no grab bars………..nothing!!! I was not to be the only user of this thing.

This was the first thing in life that made me realize that “the world does not conform to me, I MUST CONFORM TO THE WORLD”. It is a reality I live by today.

The Shower Stall:

Like any new construction, there is a shower stall. The “experts” recommended grab bars (not installed), a shower wheel chair (still in the basement with the original wrapping) a low thresh hold base for entry (installed but not needed), a temperature controlled thingy so I don’t burn my ass (not necessary but installed), a movable shower head that slides up and down (I don’t use this as such, I remove the head ‘cause I shower on my ass while using it to wash the dogs!!!!), an interior light so I could see (not necessary ‘cause I have eyes).

The Sink:

Well this was a lovely item. Seems the “experts” recommended:

•That the mirror goes all the way down to meet the countertop ‘cause shorty here, needs to see what he is shaving

•That the middle area be left open to accommodate a wheel chair user’s legs (the fact I don’t have any seems to have slipped his mind!!!)

•That the counter height be set a bit lower than normal.

The Bath Tub:

•The only thing we had done differently is the addition of an extra course of tiling to the presenting edge. This acts as a platform for me to sit on before getting in the tub as well as a place to land on when I get out. MOST RECOMMENDED (our idea…….not the “experts”)

The insurance company bought an automatic bath tub lift for me (“expert” recommended). You know the kind that you sit on………..it lowers you into the tub………..when finished you push a button and it raises you out of the water. I said thank you. After they left I told the wife “pack that thing up - please!!!! I’ll figure a way on my own”. It rests in the basement with the other crap they gave me!!!

I think it is important to listen to the “experts” ……………….to consider what they say……….to think about it and the expense………and not take them at face value!!

ED

This is my tub. Good for any one legger, no legger, etc etc

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This is the third installment of “building a home” for the disabled………specifically as an amputee / wheelchair user.

::: Other Areas :::

General:

•All doors are wide. Mine are 36”. This allows access via chair to all areas.

•All light switches in my home are installed at “wheel chair height”. This was done before I realized it. It does make the home a bit weird but after I got used to them…..they are a blessing even when I am on my ass.

•All areas should be large enough for a wheel chair user to get around in without taking out a wall while the user is turning.

•Laundry facilities should be “front loading”. Whether I am in a chair or on my ass, I am still capable of doing laundry (dam it). I just suck at putting things away.

•Unless you are pretty sure about living a long time and dying in a home, refrain from having kitchen counters set at a low level or lowering your upper cabinets. Wacko looking kitchens just do not do well on the market. Just DEAL WITH IT.

•Floor covering should be of a smooth hard surface such as hard wood or laminates. This is best for wheel chairs as they are easier to roll on, clean the crap from the wheels and are best for mutants like myself who “slep” around on their ass.

•A kitchen oven with front controls for the elements is best. This eliminates the need to reach over hot burners to turn them off by a chair user.

•Ensure that any grab bars installed are actually hitting wood during installation.

ED

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:o How fast was that!

And fabulous. You write really well Ed.

I would really like to incorporate this somehow on my site. It's full of the most awesome tips and humour.

Can we talk about it? I will pm you.....

You just amaze me. Truely you do. What an inspiration to everyone. I don't know what else to say.

Ally

:)

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This is the forth installment of “building a home” for the disabled………specifically as an amputee / wheelchair user.

::: My Back Yard :::

Living in this city, we were subject to a lot of “Code”. We soon learned that code has control over a disabled person. It is the law that we had to have two manual escape routes in place ‘cause I am “disabled”. As such, we designed the back yard to accommodate this without ending up with a disabled looking back yard escape route.

•The stone ramp replaces an ugly wood one. All areas are available to me in ass mode, begger’s board or chair. The result is very good.

•It is a part of the world that I can be at ease with myself without the stress imposed by others.

When building a disabled home you have to think about today, how you will be tomorrow and how you will be when you are much older. For me, I know what my future will be:

•I will walk until I cannot

•If and when anything else happens to me be it a small stroke or whatever……….I will then belong in a personal care home and my “personal body slave” will be free. I will never put her through that stage of my life.

ED

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:::Tips for the New Amp at Home :::

These are items that I came to believe in through actual experiences. I believe they hold much truth. Again, these are from a leg amp point of view.

Scenario

You’ve been released form the hospital and are now “allowed’ to go home. The euphoria of this moment is short lived. The reality of life is about to set in………slowly at first……gaining momentum until it almost crushes you.

This is “natural”. Being surrounded with all that was familiar in your new altered state is boggeling.

To start the battle of dealing with this, I found the few following actions (self imposed or otherwise) to be a benefit to me:

•Immediately start to refrain from others doing stuff for you. They are not in your altered state – you are – and you are the minority.

•Chuck the urine bottle. You’ve been hauling this puppy around long enough. It’s time to pee like a real man.

•Use your commode thing only in a washroom dedicated to your sole use and start NOW on figuring out how to live with out it. I remember I was so bad while in the hospital that I was buggered if my “favourite” wasn’t around where I left it!!! Get on with poopin’ and peein’ the human way!!!!

•Get out in public as soon and as much as possible. You may as well start getting use to the stares etc. They go away after awhile as you evolve but for now they are wicked. Get use to it otherwise you will end up as a bigger “cripple” than you think you are.

•Go to the mall and check out the HC stalls. Sure as crap they will not be “what you are familiar with” and you need to study them for future use otherwise you will become a prisoner of your own bathroom. Of course – don’t do this IF you “have to go”.

•Accept others help but never, never expect it. Sympathy in others only lasts a while – not forever.

•Whenever you are faced with a situation………study it…….have a plan……..try it……………if it works – fine…………if it doesn’t………study it again. NEVER say I cant do it……………….and if you do say it…..just do it anyway.

These are points I believe in………..that I have lived through…………….that I still use today.

ED

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Brilliant idea with the bath Ed., we have just changed ours, due to shortage of space in the bathroom we have gone for a shower bath (hard to describe shower end comes out wider), its been challenging to find new ways of having to get in the bath but I am managing it ok.

Main problem is space, I find I need plenty of space when using a wheelchair and wider doorways would be great but not possible without major work in current house. Am now living in a bungalow, but previous to this living in houses, both pretty small no room to negotiate a wheelchair, however in those days had very little need of one.

I do find myself thinking about this as I get older, and whilst I hear of others "scaling down" in house size once the children leave home I find myself thinking in the other direction. Another amputee I got to know recently had horrendous probs. on return from hospital, couldn't get upstairs, couldn't get to use bathroom etc. etc., they were about my age and said they found it humiliating. Very little help from social services, eventually they bought a lift to go upstairs but it cost them thousands of pounds to have this done. This really brought it home to me how I have to think ahead and keep the house "adaptable", so that I am independent for as long as possible.

Ann

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Great subject and fantastic advice. I have been really disappointed with my move to Fargo because of the housing situation. I was not able to find a place that was made for handicapped individuals at all. The place I am in is 3 levels with a heck of a lot of stairs inbetween. I can't even use my wheelchair in this place. None of the doors are wide enough and there's tons of carpet which makes it a pain. I'm going to be looking throughout the year for another place and maybe I'll need to build to get what I need. I doubt there will be banks lined up outside my door to give money to a single female that works in education and has 3 kids in college!

Caroln

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To Ann and Others:

and wider doorways would be great but not possible without major work in current house

I am aware of what is called an "offset hinge" for doorways. Installation of these hinges allow an additional 2" in the door swing without any other major construction. Sometimes this is all that is needed.

ED

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Ed, I like your 'building a home for the disabled' installments - great advice! :)

Ally - as this is such an important thread I have been trying to find something relevant online - after all, there should be something online, shouldn't there?

Unfortunately, I couldn't find much...apart from 'Living with a disabled cat', which I know isn't exactly what you're looking for, but I thought it was worth including anyway(?). :rolleyes: :)

Lizzie

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Unfortunately, I couldn't find much...apart from 'Living with a disabled cat',

:lol: :lol: :lol: :lol: Now why doesn't that surprise me???

On a more serious note (and going off topic - sorry), I would NEVER EVER consider keeping any pet of mine alive by amputation, purely because of the phantom pain I have been through. Animals are designed to HIDE their pain - in nature they would be picked off due to showing weakness. We have no idea what they would be suffering at any time. :(

Apologies for the diversion, but when happy pet-owners look at their amputated darlings with pride, my hair stands on end. And I am an AVID animal lover.

Ally

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Not sure about that one Ally, visited a friend recently whose dog has just had a leg amputated because of a tumour. Before the amputation he was lifeless, didn't want to do anything, however since the amputation he is apparently a different dog, full of life and back to his old self. He tears about the house and doesn't seem in any pain.

Ann

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I am an LBK and relatively able so I feel that any alterations are a waste of time.

However, common sense and telling teenagers over and over again to not walk away with the remote or the phone, has left me slightly non-plussed.

I am scared of what will happen later on when I cant either shout for help or do it myself!

I get so frustrated that when I hobble to the loo the remote is moved, a channel is put on I hate or is too loud. I sit down and notice, why dont I never notice before I am sat, that it has disappeared again. At the end of a long day I am tired and ratty. So its not a case of 'darling can you find the remote/phone' but more like'get the bleep bleep bleep now before i hit you with my sticks'.

Sorry but thats because I get scared, what if some one rings and I rush to the phone and fall etc............... Will life alway be like this. One minute I can manage the next I am a jibbering heep thinking of all the things that can go wrong.

Rachel

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Hi everyone

I have uploaded your suggestions to my website. Please check that you are happy with them, as I have quoted you, not rewritten the whole thing.

Any problems, please let me know, and I will delete/edit/etc as you advise me.

Thanks again to everyone who gave their time and knowledge,

Ally

:)

Ally's site, then go to "What to do when a new amputee comes home"

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Hi Ally

I've just taken a look at your site - which is absolutely great, by the way - and I can't find the link to "What to do when new amputee comes home". :(

Perhaps I'm more short-sighted that I thought I was? ;)

Lizzie

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Mmmm, wonder what's wrong. Try refreshing your browser to reload the page.

Otherwise go straight to What to do when a new amp comes home

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I'd tried the refresh button, Ally! It's amazing the difference 30 minutes makes to your browser. ;)

Well done - the page looks great and I also liked the page dedicated to Ed's design for building a home for a disabled person. :)

Lizzie

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My 3 most favourite, can't live without items are:-

1. Car

2. Crutches

3. Bathboard

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