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my 15 year old daughter with SMA Type II just asked me how people with SMA fly. 

I really didn't know how to respond.  Can anyone tell me their experience -

especially as far as seating and comfort?

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Wow! Are you on a ventilator?

Kemp

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From: [mailto: ] On

Behalf Of Amy

Sent: Sunday, October 26, 2008 6:29 PM

Subject: Re: airline travel

Last time I did air travel I passed out at cruising altitude and later

turned blue as my airway closed up while we began landing.

No plane staff would give me any on board oxygen during the time I was

gasping and turning blue because I " hadn't cleared " or " brought my own

oxygen tank " and I " was in the bulkhead row where no oxygen tanks were

allowed " . {the only row I could use with a leg fracture making my leg

stick out by the way}.

When we landed- the business passengers trampled the paramedics and

delayed them from helping me.

A few assholes had the nerve to say " Handicapped people can't leave

before the rest of us normal people do! It's the rule! I don't have

to wait for someone like THAT to get off first! " .

And my MDA clinic, pulmonary, primary and other 'experts' in my health

care team had told me flying was totally safe and okay....

>

> my 15 year old daughter with SMA Type II just asked me how people

with SMA fly. I really didn't know how to respond. Can anyone tell me

their experience - especially as far as seating and comfort?

>

>

>

>

>

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Please remeber- many airlines have rentable containers that are

designed to protect wheelchairs and keep them upright and in tact

during transport. The rental fees {last I saw} were $75 to $100 but

the money's worth it to me if you can't sit up in a standard non

customized wheelchair. You do have to ask airline {more than one

dept. as well usually} to lease a wheelchair cargo container.

Airlines don't openly announce or offer them. Partly to avoid cranky

elderly travelers from bitching at the staff to put a standard manual

wheelchair into the containers for free.

I'm not on a vent for the replier who asked me that in re to flying.

If I had access to a bi-pap, c-pap, or vent I think I would've been

way better off but my pulmonary and primary drs at that time were

adamantly against 'part time' pulmonary devices.

Years before the 'turning blue event' I had some good air travel

experiences. I also used to work and study in the travel tourism and

hospitality industry.

It is very important to get to the airport ridiculously early. Pull

every removeable part off of your wheelchair and carry it onto the

plane.

> >

> > If you were on a ventilator, how would you go about flying? If

> you wasn't

> > going overseas, would you travel by train instead? If you were

> going

> > overseas, would it be easier to travel by ship?

> >

> >

> >

>

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