Moved Thread: New Here and have several questions

[SueM in MN]

Author: Joe Hurley
Welcomed Guest
From: Middletown, CT USA
Registered: 04-27-01
Posts: 2
New here, have several questions
Hi, all. I'm new on this forum and have some questions.
Some background info to help people understand where I'm coming from: In 1976, at age 8, I was diagnosed with a benign brain tumor on my pituitary gland. It was successfully removed, but left me with several medical problems. Among these are (1) no peripheral vision, (2) a condition known as "diabetes insipidus," which is to water what regular diabetes is to sugar (I dehydrate easily, in short), and (3) a tendency to wilt or pass out in very hot and sunny places and (4) an inability to perspire from ambient air temperature (I still do when I exercise).
In addition to these problems I take two medicines that have to be refrigerated at all times (very expensive and hard to replace if they spoil).
OK, in addition, two car accidents, one in 1992 and the other in 1999, have left me with significant back problems.
As a result, I can't run around WDW like a kid.
I on one previous trip rented an ECV from Care Medical; on others, I have rented the ones in the parks.
The Care Medical thing was a disaster -- the thing died three hours after I started using it, on the bridge to Adventureland. (will never forget it).
So, here are the questions for those knowledgeable about such matters:
1. I'm staying at All Star Sports this trip. I am planning on renting an ECV to make getting around easier. (I CAN walk, but too much of it in a hot place causes wilting; and standing in one place for a long time causes back pain). Suggestions for where to rent from? I am 5'8" and weigh about 200.

2. How easy is it to get ECV's in and out of hotel rooms at All STar Sports?

3. What's the latest about getting a fridge for medicine at All Star? I've seen conflicting reports, and kind of have a hard time swallowing the idea that I have to PAY extra because of my medical condition!

4. If I rent an ECV, what's easier to get around? Take it apart and put in trunk of rental car and drive to where I'm going, or try to use the WDW buses. (Had a bad experience with the buses and an ECV two years ago -- when the driver turned from Buena Vista Drive onto the ramp to World Drive to go to MK, the thing nearly tipped over with me in it!)

5. I don't mind waiting the requisite amount of time (based on line length) to ride an attraction -- I'll bring a book or something to read -- but such waiting needs to be done in a place that is (a) shady and (b) sub 80 degrees. What need I do to make sure that happens?

6. How do I deal with the inevitable "But you look young and healthy -- why do you need help?" questions that always come.

Looking forward to your advice and answers on the above. You can post here or email me with answers, your choice.
Thanks in advance,
Joe Hurley

originally posted 04-27-01 05:07 AM

 

[SueM in MN]

SueM in MN
Moderator
From: Blaine,Minnesota,USA
Registered: 08-23-99
Posts: 2759
Welcome.
I can't answer your ecv questions, but I can answer 2 questions:
Refrigerators: WDW used to provide free refrigerators for people with medical needs. From what I have heard, they no longer are. Probably because too many people who did not really have a medical need were asking for one to save the rental fee. In place of a refrigerator, people have been told they can leave their medication behind the front desk at their hotel. That would be inconvenient and not a very controlled environment. I suggest you call WDW Resort Special Reservations at (407) 939-7807 (voice) or (407) 939-7670 (TTY) to discu ss your problem. Maybe they will help.
If you need to bring your medication to the parks, you can store it at First Aid. There are nurses there and
IMHO would be a safe place to store it.
Someone mentioned an electric (and/or car) powered small cooler. Here's a link for an 18 quart cooler: http://www.skingco.com/convenience/food_related/2igloo.htm#features3352
That one is a little too big, but I've heards of small ones that just hold a 6 pack. Here's another link:http://www.acun.com/~blueseas/clartel/koolatron.html#p9

Guest Assistance Cards: You can go to Guest Services in any of the parks to request a Guest Assistance Card. They have one with a specific message that would meet your needs; waiting somewhere out of the heat and sun. You don't need a doctor's letter to get one, just be ready to expalin what you need.Look for any of teri's posts. She compiled a FAQ list that includes everything you would want to know about GACs and she has a link in her signature.
SueM in MN
Co-Moderator of disABILITIES
originally posted 04-27-01 09:41 AM
W

 

[SueM in MN]

Wes
DIS Veteran
Registered: 09-13-99
Posts: 127
Dealing with Invisible Illnesses/Injuries
Your 6th and final question was:
6. How do I deal with the inevitable "But you look young and healthy -- why do you need help?" questions that always come.

I have chronic fatigue, and I have to deal with this all the time. So I should have an answer for you, but all I can think to give you right now is one small illustration.

My doctor placed me on medical leave 2 days ago. Just two days before that, one of my co-workers said "You look a lot better than the last time I saw you."
I told her "It's an invisible illness." And I explained just a bit of the internal symptoms I had experienced as my latest relapse was clearly coming on (due to trying to cover for too long a period for being short-staffed) and how it is like falling over a cliff once it hits and that the last time it happened, just one extra hour at the end of an all-day meeting meant it was 19 months before I could put in an 8-hour day again for 5 days a week. Maybe this is saying too much. This was a co-worker with whom I will be working for a long time, and education is the best way to keep her aware of the invisible nature of my illness.

But for dealing with people you just encountered and having to explain ... I don't know. When I travel, I keep a short note in my wallet from my doctor explaining my invisible illness. If I become exhausted and run into difficulties with the powers that be, I have this -- though fortunately the two times that I might have needed the note -- both at airports -- the United Airlines people responded wonderfully with no need for the note.
I know this still does not say how to deal with the person who thinks you are somehow cheating him/her because I require special consideration and do not fit in their view of how the world is supposed to be. I have never run into that from anyone in authority. But how to deal with someone else in the line who makes cutting remarks??? I think this is where the people in authority definitely need to brought in.
This note is certainly no silver bullet for this problem, but I hope it at least starts the ball moving on
some more responses.
originally posted 04-27-01 10:27 AM

 

[SueM in MN]

Author: teri
DIS Veteran
From: Menlo Park, CA, US
Registered: 08-22-99
Posts: 5628
Welcome! Take a look at our FAQ (NOTE FROM SUE: I you look for a post on this new board from teri, You can follow the link in her signature to the FAQs).
The ECV section isn't done yet, but you will find useful information about the GAC, staring and comments, pacing yourself, and other useful topics.
Walker Mobility at www.walkermobility.com and Randy's are the other 2 companies that are mentioned most often for rentals.

"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com
originally posted 04-27-01 11:54 AM

 

[SueM in MN]

lisapooh
DIS Veteran
From: Miami, Fl, USA
Registered: 03-14-00
Posts: 466
Hey Joe, welcome to this great group. Sorry you had a bad time with the ECV from Care Med. I have never had a problem with them. Did have a problem with Walker so you never know. I no longer rent because my wheelchair has become a permanent part of my life.
How to answer strangers questions as to why I need help or why I'm in a wheelchair. Frankly it is none of their business, Multiple chronic illnesses is as much as I am willing to say.

Pooh Bear
originally posted 04-27-01 04:01 PM

 

[SueM in MN]

Wheelsie
Moderator
From: Mid West USA
Registered: 08-22-99
Posts: 1937
Just wanted to add in a welcome!

Wheelsie Co-Moderator of disABILITIES and **********
wheelsie@mail.wdwinfo.com
originally posted 04-27-01 09:30 PM