Fesability of doing NIH study trip alone

[Guest guest]

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

[Guest guest]

Yes Rhea, you can do it. I will write you at home.

Cindylouwho

Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

[Guest guest]

Rhea yes yes yes. If your dad will take you to the airport the rest is easy.

You'll fly into Baltimore. If you have your own chair you can take it, if not

you can get one right when you get dropped off at the door. The airport

personnel will take you to the gate and to the door of the airplane if needed.

Also they will have one waiting for you at the other end. All you do is call the

airlines to make these arrangements a head of time. Also let them know if you

will need personnel to carry your bags. They will assign two people to you. The

airport shuttle service will take you to and from the hospital. Reservations

help make things go smoothly. I have that # if you need it, but NIH can give it

to you too. My fare way $40 one way for the both of us, but we had the handicap

vehicle which costs more. You can use the shuttle service (vans) or the taxi

service. It is a 20 minute ride to the hospital. Your fee I would guess around

25 dollars each way. They will have their new MRI machine in a few weeks, so

that will not be an issue for you. But they provided a town car for the travel.

It was almost like a limo! So with what ever your airfare is, plan on adding

around $50-$75 for taxi or shuttle service. Here is the hospital web site so

you'll know what it looks like www.HarborHospital.org Here is the shuttle

service so you can call and get a Quote, 800-BLUE-VAN (258-3826). You'll need

the hospital address Harbor Hospital, 3001 South Hanover Street, zip code 21225.

Other than that, maybe a few single dollars to tip the person helping with bags.

But that isn't necessary because that is their job. Once your at the hospital,

you need no $ at all. If you have Northwest airlines there, it is wonderful for

people that have handicaps and limitations. They bend over backwards to help.

After you make your flight arrangements you'll want to call the airlines and let

them know what help you will need. Having a chair waiting for you is a good

idea, sometimes the walk to you gate can be a mile, and I'm not kidding. (

although Baltimore airport is a bit of a small one)Also if the security check is

backed up, you could find yourself standing in line for an hour. We were luck

and got right through at a slow time. They like to have you arrive at the

hospital in the early evening the night before your tests. And plan on leaving

the hospital around 4 or 5 PM on the last day, to catch a plane for 6 or 8 PM.

Remember, you need to be at the airport about 2 hours before your flight. So

pack light, the clothes you wear there you can wear home. You'll wear your own

clothes at the hospital, so may pack to outfits. Pack your pillows in a big

duffle bag, and keep you meds on you.

So look at this as an adventure!

Ask any questions you want. Once you have all the reservations and

accommodations in place then you just go for the ride.

I'm here for anything you want to know.

Cindy

----- Original Mes . sage -----

From: Rhea

To: ceda

Sent: Monday, August 23, 2004 1:51 PM

Subject: Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Rhea yes yes yes. If your dad will take you to the airport the rest is easy.

You'll fly into Baltimore. If you have your own chair you can take it, if not

you can get one right when you get dropped off at the door. The airport

personnel will take you to the gate and to the door of the airplane if needed.

Also they will have one waiting for you at the other end. All you do is call the

airlines to make these arrangements a head of time. Also let them know if you

will need personnel to carry your bags. They will assign two people to you. The

airport shuttle service will take you to and from the hospital. Reservations

help make things go smoothly. I have that # if you need it, but NIH can give it

to you too. My fare way $40 one way for the both of us, but we had the handicap

vehicle which costs more. You can use the shuttle service (vans) or the taxi

service. It is a 20 minute ride to the hospital. Your fee I would guess around

25 dollars each way. They will have their new MRI machine in a few weeks, so

that will not be an issue for you. But they provided a town car for the travel.

It was almost like a limo! So with what ever your airfare is, plan on adding

around $50-$75 for taxi or shuttle service. Here is the hospital web site so

you'll know what it looks like www.HarborHospital.org Here is the shuttle

service so you can call and get a Quote, 800-BLUE-VAN (258-3826). You'll need

the hospital address Harbor Hospital, 3001 South Hanover Street, zip code 21225.

Other than that, maybe a few single dollars to tip the person helping with bags.

But that isn't necessary because that is their job. Once your at the hospital,

you need no $ at all. If you have Northwest airlines there, it is wonderful for

people that have handicaps and limitations. They bend over backwards to help.

After you make your flight arrangements you'll want to call the airlines and let

them know what help you will need. Having a chair waiting for you is a good

idea, sometimes the walk to you gate can be a mile, and I'm not kidding. (

although Baltimore airport is a bit of a small one)Also if the security check is

backed up, you could find yourself standing in line for an hour. We were luck

and got right through at a slow time. They like to have you arrive at the

hospital in the early evening the night before your tests. And plan on leaving

the hospital around 4 or 5 PM on the last day, to catch a plane for 6 or 8 PM.

Remember, you need to be at the airport about 2 hours before your flight. So

pack light, the clothes you wear there you can wear home. You'll wear your own

clothes at the hospital, so may pack to outfits. Pack your pillows in a big

duffle bag, and keep you meds on you.

So look at this as an adventure!

Ask any questions you want. Once you have all the reservations and

accommodations in place then you just go for the ride.

I'm here for anything you want to know.

Cindy

----- Original Mes . sage -----

From: Rhea

To: ceda

Sent: Monday, August 23, 2004 1:51 PM

Subject: Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Fesability of doing NIH study trip alone

I guess this one is for Cindy and any of the others who've gone and

done the NIH tests and study.

I really want to go as I think this is a chance in a lifetime

opportunity to get a full workup by people who know EDS and get a

good handle on my condition. (You won't believe the years of fight

I've put in to get the little bit of treatment and testing and

monitoring I've got now.) I also think this just may be my chance to

get the ball rolling and doors opening to me to some services in my

tiny city that I know I'm eligible for but can't get due to medical

mumbo jumbo technicalities. IE/ phara bus for one, disability

housing, etc.. anything that would get me on my own or at least

partially independant.

So, I think I might be able to get a free flight from a charity to

get me too and from Baltimore. (I live in Ontario, Canada). If I

were to go I would have to do the whole trip myself as I don't think

I could convince either parent to come along. I may have a chance

with my Mom, but I wouldn't bet on it. I've never left Ontario

before, never mind the country, let alone alone. It is a big

undertaking for a 19yr old, particularily one with EDS. I'm not sure

if I could do the whole haul myself. My Dad could probably drive me

to Ottawa to drop me off at the airport and get me on my way, but

once landed in Baltimore (assuming it's a direct flight) do you get

transportation to the hospital or do you have to pay a cab. Approx.

how much would that be? And for the MRI that has to be done at a

different hospital, do you have to pay for transport for that study?

Is there any way I could arrange to have a wheelchair waiting for me

at the airport in Baltimore and a stewardess or volunteer or somebody

who knows where I have to go from there take me there? Once at the

hospital I know I could handle things. It's just getting to

Baltimore from Canada and back again that I'm not sure of. Any

guesses on how long the flight from Ottawa, Ontario to Baltimore

would be?

Thanks so much! I will find a way to make this work!

-Rhea

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

" Opps I meant for that last one to go to Rhea at home. sorry. "

Not a problem Cindy! Thanks for all that information. It allowed me

to work my nerve up enough to send them my request to be part of the

study. I hmmed and hawed for 20 mins and then typed it up and sent

it off before I lost my nerve ;-)

I'm sure Dad will flip, but Mom thinks it sounds like a reasonable

idea, especially since I'd be willing to go by myself. If I get a

date for the study, then I'll see if I can work out a charitable

flight from an organization here. If I can't, then I guess the whole

thing would have to be off.

I don't have a wheelchair. I could rent one, but I think it's

probably better to use the air line and the hospital ones? I know

I'll be sore and hurting from all that travel, so I want to make sure

I'll have a w/c there for me so I would definitely call and book it

along with an attendant. (That is so neat that they provide that

service!) I think my Mom and Dad would probably provide the $50-75

US but even if they didn't I could dip into my savings.

I just know tomorow morning I " ll wake up and think my goodness what

have I done! But this just sounds like something that could really

help me out and put it all together.

Thanks so much Cindy!

I'll let you know if/when I hear back...

**nervous anticipation**

-Rhea

[Guest guest]

" Opps I meant for that last one to go to Rhea at home. sorry. "

Not a problem Cindy! Thanks for all that information. It allowed me

to work my nerve up enough to send them my request to be part of the

study. I hmmed and hawed for 20 mins and then typed it up and sent

it off before I lost my nerve ;-)

I'm sure Dad will flip, but Mom thinks it sounds like a reasonable

idea, especially since I'd be willing to go by myself. If I get a

date for the study, then I'll see if I can work out a charitable

flight from an organization here. If I can't, then I guess the whole

thing would have to be off.

I don't have a wheelchair. I could rent one, but I think it's

probably better to use the air line and the hospital ones? I know

I'll be sore and hurting from all that travel, so I want to make sure

I'll have a w/c there for me so I would definitely call and book it

along with an attendant. (That is so neat that they provide that

service!) I think my Mom and Dad would probably provide the $50-75

US but even if they didn't I could dip into my savings.

I just know tomorow morning I " ll wake up and think my goodness what

have I done! But this just sounds like something that could really

help me out and put it all together.

Thanks so much Cindy!

I'll let you know if/when I hear back...

**nervous anticipation**

-Rhea

[Guest guest]

Hi Rhea

Ive been debating this option myself. Anytime I bring it up with my

mom I get the " I dont see anyway that you could do it " even though

she was the one wanting me to take the first week off school for my

wisdom teeth. I will have to figure out plane fare and that stuff

but just maybe we would be able to work things out and maybe cut

some costs (If they will take two people in the study at a time).

Which airline would you be interested in taking? Maybe if we could

both leave from Toronto or something like that?

Stacey

[Guest guest]

I'm actually glad you sent it to the list by mistake, because the

email answered some questions I had too! So, thanks!

> Opps I meant for that last one to go to Rhea at home. sorry.

> Cindylouwho

>

[Guest guest]

In a message dated 8/23/2004 12:48:11 PM Pacific Standard Time,

c-clark05@... writes:

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Actually I appreciate that info also! Gives me an idea of who to call and

what to expect to pay for the ground transportation. Is December the soonest

they are now scheduling appointments? I'll be doing pre-op work for hip surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

[Guest guest]

Liza~~

What kind of hip surgery are you having?

Debbi

Re: Fesability of doing NIH study trip alone

In a message dated 8/23/2004 12:48:11 PM Pacific Standard Time,

c-clark05@... writes:

Opps I meant for that last one to go to Rhea at home. sorry.

Cindylouwho

Actually I appreciate that info also! Gives me an idea of who to call and

what to expect to pay for the ground transportation. Is December the

soonest

they are now scheduling appointments? I'll be doing pre-op work for hip

surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

[Guest guest]

From: Thing1973@...

December the soonest

they are now scheduling appointments? I'll be doing pre-op work for hip

surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

***********************************************

Liza, I believe they are scheduling for Oct. now. Barb, I'm guessing, purposly

shceduled into Dec. because of her school schedule. The study is 6 years long.

Three/2year sesssions. They will be doing diffeerent tests in each section. You

can participate in one or all parts. So there is time for you to join in.

I know we met in NY. Are you the pretty blonde in the elec. chair?

Cindylouwho

[Guest guest]

From: Thing1973@...

December the soonest

they are now scheduling appointments? I'll be doing pre-op work for hip

surgery

by then, so if accepted would have to wait till much later. Will they still

be testing next March or beyond do you think?!

Liza

***********************************************

Liza, I believe they are scheduling for Oct. now. Barb, I'm guessing, purposly

shceduled into Dec. because of her school schedule. The study is 6 years long.

Three/2year sesssions. They will be doing diffeerent tests in each section. You

can participate in one or all parts. So there is time for you to join in.

I know we met in NY. Are you the pretty blonde in the elec. chair?

Cindylouwho

[Guest guest]

In a message dated 8/24/2004 5:11:16 AM Pacific Standard Time,

c-clark05@... writes:

I know we met in NY. Are you the pretty blonde in the elec. chair?

Cindylouwho

You might be thinking of Gretchen...she had long hair and an actual power

chair. I was shorter, short blond hair, accompanied by a reheaded teen and was

either using one crutch or a smaller scooter towards the end (after attempting

to walk ALL over Niagra Falls, LOL). I know I met a couple of Cindy's....and

am still trying to match up the online ones with the in-person ones!

[Guest guest]

> Liza, I believe they are scheduling for Oct. now. Barb, I'm

> guessing, purposly shceduled into Dec. because of her school

> schedule.

Yes, this is correct. My next quarter starts October 4 and I have

classes Tue/Thu so I can't get out there until my Tue class ends.

As it is, I can only run out and back quick on the 13-14 of Dec

because my Thu class is 2 weeks longer than the Tue class and I have

almost no time off between that class and the start of the next

quarter.

-Barb