Re: Keeping up with (who)? Yourself or Them/

August 9, 2005

Angie,

I'm not trying to say that thinking or hating SMA is a daily thing, or even

high on my priority list either. I just cant believe you never got upset

when there was absolutely no way u could do something others around u could

that's all. I guess u havent had that happen to u yet, just hard to believe

since you are more experienced in life than me. Well I say then that's great

you

havent met a hurdle or obstacle that u couldn't tackle in life yet.

Kimi

In a message dated 8/9/2005 10:45:12 A.M. Eastern Daylight Time,

angie@... writes:

PS - as an adult, my views change yet not due to SMA concerns, I have higher

priority concerns to worry about

August 9, 2005

Angie,

I think the difference in opinion for those who cant believe u never had a

" I hate SMA " time in your life is b/c your SMA hasnt progressed as fast as

others or at least mine. I dont think its old age and SMA, its just

progression

of the disease which is enevitable at some point in our lives. I dont mean

to come off as saying you have an " easier " life, but I don't think we all

have progressed the same and maybe that's the difference in opinion??

Kimi

In a message dated 8/9/2005 11:42:08 A.M. Eastern Daylight Time,

angie@... writes:

Old Age and SMA don't mix well. I now take Mestinon to give me back

some of my strength. I wouldn't have needed to do this if I didn't have SMA.

I did get emotional when I learned about the why's and how's of what I have

been going through so this would qualify as a SMA-downer moment.

Angie

August 10, 2005

Kimi,

I have " degraded " quite a lot over the years and to me it has been fast yet I

suppose my inner spirit has no MN to be taken away and that's why it hasn't

bugged me as much.

Angie

On 2005.08.10 01:04, Ksmile96@... wrote:

> Angie,

> I think the difference in opinion for those who cant believe u never had a

> " I hate SMA " time in your life is b/c your SMA hasnt progressed as fast as

> others or at least mine. I dont think its old age and SMA, its just

> progression of the disease which is enevitable at some point in our lives.

> I dont mean to come off as saying you have an " easier " life, but I don't

> think we all have progressed the same and maybe that's the difference in

> opinion?? Kimi

>

> In a message dated 8/9/2005 11:42:08 A.M. Eastern Daylight Time,

> angie@... writes:

>

> Old Age and SMA don't mix well. I now take Mestinon to give me back

> some of my strength. I wouldn't have needed to do this if I didn't have

> SMA. I did get emotional when I learned about the why's and how's of what

> I have been going through so this would qualify as a SMA-downer moment.

>

> Angie

>

August 13, 2005

This won't solve all the issues, but I'd say see if he can buy this extreme 4x4

chair! It has made it possible for me to do all the state park stuff you

mentioned, plus getting on the beach which I absolutely love!! It is expensive,

but opens a whole new world for we the out-doorsy type!! hehe

http://www.vestil.com/wc/extreme4x4.htm

" D. Hampsten " <childcaregirl01@...> wrote:

You know, sadly in today's society in many places there are still several areas

that are not w/c accessible. For instance how many state parks/campgrounds/lake

areas etc. have handicap parking, give out special discount cards to thsoe with

a documented physical disabilty, have full handicap showers/restrooms, handicap

accessible camp sites, but yet have no handicap accessible beaches, or even

shore lines. I know for my boyfriend it is very hard for him to have all his

family together in one spot camping, but then when it comes to day time

activities he gets to stay at the site all day and twidle his thumbs or whatever

while everyone else gets to do other activities. Many times he feels bad and

just wants to go and stay to himself. Half of the time he can't even get close

enough to see the family doing whatever it is. He has always been an outdoorsy

type of person and before he became w/c dependent he would spend so much time

there. However it is even sad when many college campuses

are not fully w/c accessible. My boyfriend and I are both taking classes at the

junior college near our home. They do have handicap button doors, however some

one gets the bright idea every few days to go and flip the switches

intentionally since the lock switches are on the ceiling, so the doors can't

open without pulling on them. Several times he feels bad that we can't go in the

door closest to our classrooms because we have to walk all the way around the

building to get a door that opens, or even to another building to find someone

who can unlock it., We have been late for classes a few times, and I can tell it

bothers him. I try to remind that it is okay, and it shouldn't get to him, but I

can tell it does. Like some of the rest of you ahve pointed out not all clubs

and bars are w/c accessible either. Yet another thing added to the list of

things he feels bad about. Is there anything that those of you that are w/c

dependent like for those of us " walkers " to say or do that help

keep the negative thoughts and regrets down?

__________________________________________________

August 13, 2005

I saw the website for that outdoorsey w/c and dismissed it for me simply

because I don't like the solid form base. It wouldn't allow my feet to dangle

should I go without footrest and it may even catch my ankles when I get

lifted out of it; I get hoisted by my jeans waistband like a sack of potatoes

and as I rise my feet swing backwards. In my w/c I have, my footplate is

centered and has clearance on the sides to allow my feet to swing underneath

without getting caught. Plus it doesn't enable me to approach table legs

without banging into them and to use my tiedown straps, it wouldn't do.

I also can't see how I'd manage that control box; I like a front positioned

joystick so my fingers can curl across the front edge of the box so I can

push the joystick forward without relying on my arms or shoulder muscles. The

seating looks typical.

I am glad I am in no urgent need to go off to the beach or to do any rough

terraining. I'd wish they'd blend together all the good aspects of these

outdoorsey w/c to the good ones for the indoorsey ones.

I'd also like to know just how many of these manufacturers actually have

disabled engineers, designers on staff and not just disabilities where they

have full upper body strength either? That iBOT ad/website shows a

quadraparalegic (I am guessing as to the look) in the woods, but no one

climbing stairs, hm? Gee, I know why now .... a message before mentioned the

" operator " has to grab a hold of a railing to stabilize and/or aid in the

climb ... BLLZZZZTTT!!!! That sold me on buying one, NOT!

The ideals of the Extreme is better, but the cosmetics and comfort look of it

doesn't appeal to me unless I can own two w/c ... one for outdoors and one

for indoors..... but then I'd be transferring in and out too much. Oh well.

Angie

On 2005.08.13 14:03, Joy wrote:

> This won't solve all the issues, but I'd say see if he can buy this extreme

> 4x4 chair! It has made it possible for me to do all the state park stuff

> you mentioned, plus getting on the beach which I absolutely love!! It is

> expensive, but opens a whole new world for we the out-doorsy type!! hehe

> http://www.vestil.com/wc/extreme4x4.htm

>

> " D. Hampsten " <childcaregirl01@...> wrote:

>

> You know, sadly in today's society in many places there are still several

> areas that are not w/c accessible. For instance how many state

> parks/campgrounds/lake areas etc. have handicap parking, give out special

> discount cards to thsoe with a documented physical disabilty, have full

> handicap showers/restrooms, handicap accessible camp sites, but yet have no

> handicap accessible beaches, or even shore lines. I know for my boyfriend

> it is very hard for him to have all his family together in one spot

> camping, but then when it comes to day time activities he gets to stay at

> the site all day and twidle his thumbs or whatever while everyone else gets

> to do other activities. Many times he feels bad and just wants to go and

> stay to himself. Half of the time he can't even get close enough to see the

> family doing whatever it is. He has always been an outdoorsy type of person

> and before he became w/c dependent he would spend so much time there.

> However it is even sad when many college ca! mpuses

> are not fully w/c accessible. My boyfriend and I are both taking classes at

> the junior college near our home. They do have handicap button doors,

> however some one gets the bright idea every few days to go and flip the

> switches intentionally since the lock switches are on the ceiling, so the

> doors can't open without pulling on them. Several times he feels bad that

> we can't go in the door closest to our classrooms because we have to walk

> all the way around the building to get a door that opens, or even to

> another building to find someone who can unlock it., We have been late for

> classes a few times, and I can tell it bothers him. I try to remind that it

> is okay, and it shouldn't get to him, but I can tell it does. Like some of

> the rest of you ahve pointed out not all clubs and bars are w/c accessible

> either. Yet another thing added to the list of things he feels bad about.

> Is there anything that those of you that are w/c dependent like for those

> of us " walkers " to say or do th! at help

> keep the negative thoughts and regrets down?

>

> __________________________________________________

>

August 13, 2005

I agree with you Angie. I am not even sure my bf could get in it the way it is

styled. Also another drawback is my bf's size. He is 6'3 and about 300 lbs due

to his inablility to do much exercise. And unfortunately most beaches near lakes

are at a steeper angle than 15 degrees. He would like to have some type of 4 x 4

outdoorsy chair, however he would also have to have one for inside and one for

outside. He can just abrely use the chair he has now inside as the house they

live in is not handicap designed, they make due of course, but it is usually

close quarters. Also insurance would not pay for this type of chair either and

they could not afford it. Why is it that all the " fun " equipment is so

expensive? And it seems almost impossible to find any to rent. Maybe that is

what I aught to do....open a " fun equipment " rental......sort of like those

companies that rent out infalatable fun games.....I will rent fun

chairs....lol....just a thought.

However that chair does look like it could be fun at times, if the right person

was in it.

Angie <angie@...> wrote: