Re: HELP!- SCOOTER ONLY -comfort-speed and incline ability.

[Guest guest]

Hi Debbi (and everybody else who can relate to this),

Thanks for spelling it out!!! You know, I know exactly how you

feel!!!!!!!!!!!!! And I bet a lot of people here knows exactly what

you are talking about!!!! Either they are at the exact same point

themselves, or they have been there. I have been there for sure....

So since you started being honest, I will reveal my secrets in this

department... LOL....

I think it was back in 1989 or 1990... I was in such a state, could

barely walk. Back then I thought it was the Psoriatic Arthritis, but

now I know it was a combination of that and the EDS... At the time, I

worked at a traffic school. As part of my work, I had to go to the

bank every day. The bank was about 1/8 mile from the office, but I

used more than 45 minutes... It was a bit like walking with mouse

steps, if you get my drift. It was sloooow... And it felt like

running a marathon every day. I was in so much pain. Sometimes I did

use the car, but it was hopeless to find parking there, so it wasn't

a good solution...

My RD referred me to an Occupational Therapist for the first time. I

went there thinking that she would get me all these neat little

things to make life easier, as good knifes with a 90 degree angled

handle, huge pens and such. She did get me all those things. But not

only that. Suddenly she told me that she thought I needed an

electrical scooter. I thought the lady was totally crazy... To me it

was kind of the opposite as for you. To me a scooter was even worse

than a wheelchair. Back then I had never seen any young person in one

of those. Not even once. Just elderly people who had difficulties

walking... And she dared propose to me that I should get one of

those... I was 24-25 yrs. old at the time. I thought the lady was

completely nuts!!! And I told her so too... LOL... I think I told her

that she had to kill me first to get me into one of those... He-he...

My breakthrough was when I was going to the conference in 1998... As

part of the trip was going to see things, also a trip to Disney

World. I knew very well that I had not even gone to our local zoo and

amusement park for about 10 years. The last time I went, it was a

nightmare. The only way I had sort of patched my every day life

together the past years, was by using my car door to door. If I was

other places, I used a taxi. Earlier I could stretch things a bit by

using crutches, but that did not work anymore with those shoulders of

mine. It was a long time since I stopped going to shopping centers. I

couldn't do it. At my local store, I was hanging on the cart while

shopping, and got such pain from it, but it was the only option. I am

sure I annoyed people so much often when I was asking my standard

questions. " How far is it? " , " It isn't far at all " , " Yes, but how

far is it really? " , " Oh, it is just a 5 minute walk " , " But how far is

it really??? How many meters??? " , " I am telling you, it is not far,

it is only 200 meters " , " Well, that is way too far, I will have to

order a cab " , " A cab, it is only 200 meters " .... Of course I did not

have these discussions with people I really knew, but..... The last

Climatotreatment trip I had to Lanzarote, before they moved the

treatments to another place, I kept track of how much money I used on

using a taxi. I used $530 for taxi's back and forth to the beach

during the three weeks. This was 1990 and the beach was around 1/4

mile from the hotel... And taking a cab was really cheap there back

then... But I had no chance of walking...

But when I was going to the US, I realized that the only way I would

have a chance to have a nice stay there, I just had to face this... I

think one of the worst things for me, was simply that it was so

_embarrassing_. I mean, it felt so awfully embarrassing to sit down

in a wheelchair. I have no other way of explaining it. Having to face

people's reactions was awful!!!! It wasn't to use the chair in itself

that was awful... It was others, how they took it... And to be

honest, it sometimes is difficult still... I talked about this with

one OT I had back in around 1998-1999, and he told me: " Aase Marit,

have you ever considered that those feelings is just something you

will have to learn to live with. I can't tell you they will go away,

maybe it is just part of this whole thing? " ... I think he was

right... I think I am not the only one with these exact feelings.

There's only one way of learning to deal with them, " dive into it "

and meet the feelings... But, I really think that what type of

wheelchair you start with, really can make a difference here. I will

explain about that later...

Back to my US trip... I would just have to get a wheelchair in order

to make that trip possible and a positive experience... At the time I

was cooperating a lot with the OT I mentioned in my work. So after we

had visited a client once, I had a little chat with him in the

parking lot afterwards. He told me he thought it was a really great

idea to get a wheelchair, that he thought it would really make a

difference for me. He told me he was very happy that I obviously had

reached a point where I was ready for it. Oh well, I am not sure

about how ready I really was, but... Well, more ready than 8-9 years

earlier, but... I guess that says a bit about what a process this

is... And in retrospect I can't help but think about how much things

I have lost because it took me such a long time to emotionally reach

a point where I could do it. I mean, if I had become a paraplegic, I

would have been tossed out on deep water and just had to deal with

it, but for us it is so different. We can manage somehow, but much

more than we even realize ourselves, we end up doing less and less

things that mean something to us because of the limitations we have

physically.

The OT suggested I contact a few W/C companies, to see if I could

borrow a cool chair from one of them, one which would be properly

adapted to me, something I could not hope for from the state system

re. a temporary loan of a chair. We did not have enough time to apply

for one which would be mine before the conference. The company thing

seemed to work out, but just before the conference it fell apart when

the sales rep. wasn't allowed by his superiors to loan me the chair

we had planned to go for. The one I could borrow, I simply could not

handle with my shoulders/arms... So not long before I went to the US,

I ended up at the assistive device central, in their store room,

asking them please to help me. And they did. They found a neat little

Etac titanium chair. Not perfect for me, but as close you could get

without having one ordered just for you. So off I went...

I soon discovered that going abroad, to a place where nobody knew me

while going out and such, at the same time as I would be amongst

people I knew quite a bit from the list and whom I felt safe amongst

- was perfect as a training field for me. When I got out amongst

people, nobody looked at me funny or asked me " Ooooh God, what

happened to you? Poor you, are you OK? " .... All those reactions which

I had such a huge problem with. Heck, even thinking about it, could

make me blush... At the conference hotel, I would use it some, and

walk with it in front of me some. It was not bad as a " walker "

either, and great to carry papers and such. And it was a soft way of

approaching it for me. At that time just sitting down in it, was

tough... I must admit that I even felt somewhat embarrassed amongst

my peers at the conference... But I was on my way... And when I

arrived, my knees started acting up and got so inflamed in addition

to the other back/SI/hip/knees/ankles/feet thing, so having the chair

was a godsend.

While at the conference, some of us went to some shopping centers and

such. And after the conference I also went to Disney World with a

friend from the arthritis newsgroup and her husband... And that was a

revelation to me. Even if it was tough using my arms that way for the

first time while shopping, I felt like I had wings. To be able to go

shopping without problems, and without being a wreck afterwards, was

amazing. And having such a great time in Disney World, even if I had

help there by hanging on to my friend's rented scooter... I had the

exact feelings as the poem Darlene Uggen wrote to Barb when she got

her first wheelchair. It is called " New Wheels " . Even to this day, I

get tears in my eyes when I read that poem, it is happy tears over

that poem describing my feelings to a T... I will paste the poem

below...

Oh yes... I have to tell you that... Once, when I was walking in the

hotel lobby with the chair in front of me, one of the other EDS'ers

who used to be on this list, laughed and said to me " Hey, don't you

know you are supposed to be in that chair, not walk the chair " ...

LOL... It was so funny... But, as I mentioned above, at the same time

it was really hard to sit down... It is amazing how I could even

manage to feel embarrassed amongst all those fantastic EDS'ers, some

I knew pretty well after e-mailing for about 1.5 years... But I guess

it does illustrate just how difficult this is... But no matter what,

it was really, really helpful for me to be able to start my

" training " in using a wheelchair away from home and the reactions

from people here. I also think it was the right thing for me to start

with a neat, little manual one. Not a huge power chair which after

all takes a lot more attention etc.... If pushing a manual had been

completely impossible, a " help motor " would have been an option in

order to get a neat and small one with a motor. I'll say a bit about

that later.

When I got home, I had come to the point where I realized that having

a chair would make my life so much easier. So my OT applied and got

me my very own chair. He is a young and very OK guy who I knew pretty

well, so discussing things was quite OK. He did understand my need

for a chair that I could feel comfortable also emotionally. So for me

it was important to get a neat and sporty chair. One where you first

and foremost see the person in it and not the chair. One that looked

sporty and fun, something that would make it easier for me to relate

to the chair and feel " right " in it. That I felt it sort of reflected

some of who I feel I am. So after studying, talking to others etc.,

we ended up choosing the Kuschall Competition, with quite cambered

wheels (angled wheels). The wheels were important to make the chair

easier to push, but this feature also made it look good... I started

using it when I travelled, since going to meetings in the pso.

association was really tough for me, especially dealing with the

airport was horrible. After a while I started going to the shopping

center too. But I started doing these things gradually, so I sort of

didn't get too much of it at once. I felt I just could not deal with

that. So I still did my thing driving from door to door etc. But

after a while I started having the chair in the trunk, so that I had

the freedom of being able to do things without planning... I used it

this way for a long time, but did use it more and more, because after

all as you go you realize how much you have missed doing things...

Because that is after all the alternative most of the time, you stop

doing things because you can't do it anymore. And sometimes you force

yourself to do things and pay the price which is often really high...

One place where I just did not use the wheelchair, was at work. The

only time I used it, was when we went away for seminars and such. But

as long as I parked outside the door, I could manage in the office. I

also made sure that most meetings were in our office and not other

places. As many of us, I had a mileage. I could walk so and so much,

but not more. If I tried exceeding that limit, I was in trouble. I

used my mileage on walking the hallways at work, I guess. Instead I

used the wheelchair on my spare time. I guess I did the opposite of

what others often do...

I have a dog. Back then I had my wonderful Shanti, who I fell

instantly in love with on the street in Oslo, actually when I was

there and got my EDS diagnosis... She was my furry soulmate!!! She

sadly passed away a year ago yesterday... Anyway... Back on

track... I had real problems walking her. She got less and less

walks. I did have a girl who I paid to walk her, but at some point

that didn't work all that well either, so I saw that she did not get

the exercise she needed. And I really, really missed getting out with

her. And just getting out in general. With the manual chair I could

never do much, I need the place to be quite flat, or my shoulders are

soon in trouble.... So the time came to consider a power chair,

something I had no chance of doing earlier, and this was an all

emotional thing... Because there is no doubt that for use EDS'ers,

power chairs are the best thing. I must confess, I still had a thing

with scooters... To me they are also so much bigger and bulkier and

feels much more like it was no me, just a huge chair. So that was

really not an option for me. Isn't it funny how we are so different

in what we associate with these things and what we " see " ????

Anyway, my OT agreed totally with me (Here it is the OT's who

recommend and apply for such things, not a doc who writes a

" prescription " ). He did not want to see me in a scooter. At first he

wanted a 4 wheel drive for me, but actually I talked him out of it,

because I thought we would have trouble getting it approved and I

felt it was to take it a bit too far... He thought it was really

important that we focused on being able to follow my friends when

they were out in the woods with the dogs and such, something I had

told him I really missed. Not that I missed being out with the dogs,

I had not had a dog that long, but I used to be out in the nature a

lot in my younger years when I was active in the Red Cross etc. I

really missed being able to do that. Had not been out in the woods

for many, many years. So we found out about this new Permobil

wheelchair called Trax. It is not a 4 wheel drive, but it is a sporty

power wheelchair who has features making it as close to one as you

can come. It is also a bit smaller than a scooter, and could do all

that a scooter could and then some. Also it is easy to get into it

from the side. You can get a seat that swings to the side, but I only

got an armrest which folds up so that you can sit down and swing

yourself in. Worked great.

This chair actually looks so sporty that even healthy people buy it,

amongst them people who play golf. I am not kidding!!! They use it to

drive on the golf course and lets it carry their clubs. An example,

not even one child here has thought of it as a wheelchair, they

always call it " the car " . You can get it in all sorts of neat colors.

So it really gave me a soft start to using a power wheelchair, no

doubt about that. Suddenly I could go for long walks with Shanti,

even when we had a lot of snow, I never had any problems. Where

nobody could get through the snow and such with scooters and other

wheelchairs, we just had fun. We went for walks in the woods in the

summer. She chose the way, I just tagged along. She had a ball... I

went to the zoo and did so many things I had not done in years...

A while later, pretty much exactly three years ago, I had a really

bad injury to one foot. I visited with a friend (she's an OT and had

a real a-ha experience about the nature of EDS by this which happened

just in front of her). Her hubby was working on some DIY, and had

left a little piece of wood on the floor, about 1/2 " thick... I

managed to not look where I was going, and stepped on it. I got a

fracture along with ligament injuries in all 5 toes and both sides of

the ankle... How fun... It took 5 months to heal about OK. In the

mean time I was on my butt 24/7 for a long time and later I could

wobble a bit on the cast-like splint. And after that I have never

managed to get back to the shape I was, so I now depend on the chair

for almost everything. I do walk inside the house at home, but I also

do have days/periods where I need it also here. So I had to do more

adaptations in my apartment too, so things would work also here.

Over night I just had to use the wheelchair at work. WOW, was that

tough... Especially meeting clients and manage to get them to

understand that I was OK and that we were there to talk about them,

not me... LOL... Some of them were so sweet, they worried so much it

was quite a hassle to get them to stop... But I soon also discovered

that it was actually an advantage in my work that suddenly my

disability was more visible to my clients. I work with refugees who

all have some sort of handicap. From multi-handicapped kids to adults

with war injuries... Most of them come from societies where

disability is a shame... So for them to be met by a person who " has a

position " but also uses a chair, is obviously a strong experience...

Everything is good for something... But it was really, really hard at

first to face colleagues, clients and other professionals we

cooperate with... At work I use my sporty manual chair. I do that for

several reasons, but most importantly is that the office is not a

good place for a big power chair, we simply don't have enough

space... But it is also much easier with the manual one in that it is

just not that visible and it does not take a lot of attention... That

does make a difference.

After a while I just had to realize that the two chairs I had, did

not cover my needs well enough alone. For many things I needed a

smaller power chair and also I needed better seating. The seat itself

on the Trax is great, but it can only recline to 45 degrees and it

can't be tilted. Also, the same as with a scooter, you don't have a

footrest where you can get your feet up. That is a severe limitation

with these chairs. With the problems I had with my SI/back/neck, I

really needed some of these features. So my OT applied for a Permobil

Chairman 2k. I was so scared that they would take my Trax away, that

they would say that I had to choose one of them. I had heard about so

many who got only one of these. I got the Trax when it was first

released, but since it got so terribly popular, they started saying

no to adults who had a chair to begin with but wanted one of these in

addition so they could go in the woods and such on their spare time.

The rules say that spare time technology is only covered for children

under 18 yrs of age. That is a quite new rule which the organizations

are working hard to get removed again, because spare time activities

for adults are also so important for people's quality of life. So I

was really scared that they would use that rule against me. I had a

letter already written to try to fight against it. You can't believe

how surprised I was when they just approved my application for the

Chairman with no questions or anything... So I still have the Trax.

But my every day friend is the Chairman 2k. I am sure that I could

never have started with that chair. Because it is a full scale power

chair, no doubt about that. But it is also a fantastic one and it

does look a lot better than many chairs do. The ordinary Chairman

does look a bit neater and sportier. That looks so much less

" disabled " , if you understand what I mean. At least I think so,

compared to e.g. the Quickie power chairs which so many use in the

US... Another example of such chairs which I think look so much

better, is the Jazzy chair. To be honest I personally think these

look much better than a scooter. But of course, we all have different

things we associate these things with. One thing I do think is much

better with these chairs than a scooter, is that you don't have the

chair in front of you, and you can show a bit about who you are and

that you are able bodied and minded even if you use a wheelchair -

you just have to use your body a bit differently. You can send

signals with clothing, hair do, sitting position etc. It really does

make a difference, I think.

Because there is one thing I know for sure. Take my word for it!!!

Getting a chair will change your life for the better if you have a

hard time walking/standing!!!! It is really like getting wings (read

the poem below)... It is like being given a new chance in life...

Suddenly you can do almost whatever you want to do. Sure there are

limitations and all places are not as accessible as they should be,

but even with those limitations you suddenly can do so many things

you haven't been able to... It is simply fantastic!!!

One alternative to a scooter or a power wheelchair, is to get a cool

and neat manual chair and have a " help motor " on it. There's several

options for these. I know some people are really happy with these.

And, of course, if you want it, you can also get these

motors/batteries mounted on a so called comfort chair, a bigger and

more comfortable manual chair. You can either have a joystick on an

armrest, or you can have the motor built into special wheels, so that

you push and it helps you do it. Then it is best not to have any

armrests (I am not a fan of armrests on manual chairs, especially for

us with bad shoulders, because it makes it so much harder to push and

you need to have your arms in an ackward position which is really bad

for your arms/shoulders)....

The dominating feeling at first was not " being chained to the

wheelchair " at all, but rather thinking about how fantastic the chair

is and being grateful for the opportunities it gives you rather than

the limitations it gives you. Because it is for sure that nothing is

more limiting than ending up not being able to do anything, because

you just can't do it and/or everything is such a hassle when you have

these difficulties walking. Today using a wheelchair is not only for

those who have no other opportunities because they can't even stand

up (e.g. paraplegics). Today using a wheelchair is for those who have

real problems walking and standing. It is something you can choose

use as an extension to your body, so you can take control over your

life instead of letting the EDS be in control. So getting one is

really a gift. It is just too bad how difficult it is to take the

first step, jump into it and start using one... I can't believe that

it actually took me so long.... Maybe the only way is to take a huge

deep breath and " Just do it " ... To realize that maybe you have to

live with some tough experiences relating to other people and their

reactions and that you may have to feel embarrassed... But I must

say, I feel a lot less embarrassed today than I did earlier, so it

does get better... And I have gotten really good at reassuring

others, he-he... The other day I met an MD I used to work with

earlier. Had not seen him for years. Even he freaked a bit and gave

me some sentence which included " Poor you " . But I am getting really

good at telling people not to feel sorry for me, because I sure don't

feel sorry for myself. There's no need to...

As long as you are having a tough time with such feelings, I can

really recommend trying out using a chair/scooter while away from

home. If you can e.g. start practicing at an EDNF conference, I can

highly recommend that! Also it can be an idea to rent and try out

at first. I am so glad to hear that your insurance company is so

fabulous, Debbi!!!! Because for many it can be really difficult

to get one and then get the insurance company (or HMO,Social

Security, national health system etc.) to pay for a new one after a

while because the first doesn't work that well. Often it is possible,

it should be e.g. because someone's need can change, but it can be a

hassle and the easiest thing is of course to get the best option

first.

Oh well... I ended up writing a lot more than I had thought of...

That is my real problem, I just can't stop when I get started... And

this issue, is one I really care about. I thank you Debbi for raising

it. I think it is very important, and I am sure that by raising this

issue on the list, you will also help a lot of others who have a

tough time battling the question of whether or not to get a chair and

which chair to get if you get one... By talking about it here, maybe

we can help each other to process all these thoughts...

Oh gosh, it is almost 2 a.m. here now. I really have to get to bed...

I will try to write something about technical features of a chairs

tomorrow... Hopefully... There's a lot of things to consider, and I

am sure to hear a bit about it could be helpful for more than one

person on this list. So if everybody of us who have " been there "

could write a bit about which features we have got or maybe which

ones we miss....

He-he... I'll stop now!!!

hugs,

Aase Marit

This poem was written by Darlene, mother of Barb Uggen on this list

and has been published in one of the " Chicken Soup for the Soul "

books... I hope it is OK that I post it, Barb and Darlene... I

love this poem so much....

My new set of wheels

By

Darlene Uggen

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There you stand, and I see you stare,

Thinking, poor dear, she's stuck in that chair.

But I'm not sad, I'm very happy because

I haven't forgotten the way it was.

You'd say, How about a trip to the zoo,

A walk in the park will be good for you.

I was thinking tomorrow, I'll be a wreck,

from my aching feet to the pain in my neck.

You'd want to go shopping all over town.

I was thinking but, there's no place to sit down.

For you it's a snap just to go to the store,

But for me the ordeal was more of a chore.

Now I can go where ever I please

I can shop in the mall with new found ease,

Do all those things that have to be done,

and even go out and have some fun.

So, do you want to know how it really feels

to be sitting here between these wheels?

Can you remember back that far

When you got your very first car?

Well, that's how these wheels feel to me.

They don't hold me down, they set me free.

So, don't think all those pitiful things:

These aren't wheels, I think they're wings.

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