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-   -   Immune Disorder - DAS? (http://www.disboards.com/showthread.php?t=3292439)

JenniBugInPink 06-18-2014 06:14 PM

Immune Disorder - DAS?
 
I've been going to WDW 3 times in the last ~8 years or so, always using an ECV (after trying not to on that first trip and failing, LOL). I have multiple issues I deal with, but for our upcoming trip in September I have a new one. I am now immunocompromised. I have essentially no immunoglobulins (like IgG, which you may or may not have heard of). I have rheumatoid arthritis, and the medication I received to treat it a year and a half ago wiped out my immunoglobulins. Normally they rebound fairly quickly, but mine never did and apparently aren't ever going to. So, I have to act kind of like your average transplant or cancer patient as far as avoiding potential infection goes.

I need to avoid crowds of people where possible. I wear gloves a lot and a mask when I have to (as much to remind myself not to touch my face with contaminated hands as anything else, because the mask will NOT completely block aerosolized virus or bacteria from entering.) I can't touch things like door handles, railings, etc. without going through immediate decontamination procedures, and I should own stock in antibacterial wipes.

I never used the GAC, but it appears I will need to try and get a DAS. It would be nice if I could wait for rides away from the huddled masses. I don't mind the wait, as I've always just parked the ECV and gone through the regular line before on foot. I just am a little afraid of all those people now!

Getting sick is a really scary proposition for me. A cold could kill me, you know? At home, I almost never leave the house. I almost chickened out on our trip, but if it kills me, so be it. I'd rather die due to a Disney trip than live staying home all the time. I'm in Stage III/IV kidney failure, so my kidneys will take me out one day anyway. :laughing: It's been three years and I miss WDW!

What do you think my chances are for the DAS?

aaarcher86 06-18-2014 06:24 PM

I honestly, feel like it could go either way. It'd probably just be if the CM thinks it's possible to avoid germs/etc easier outside the lines.

My first thought reading it all was that even with a DAS there's just no way to avoid crowds. There's really nothing in a line that isn't anywhere else you'd be waiting, and I'd actually think you'd be fine in the line since you could stay on your EVC and not touch anything. If you'd just be kind of sitting on an EVC not touching things outside the line, I think you could do the same thing inside it. Especially since you'd still be in a 15 or so minute line with the DAS.

I remember someone posting about wanting a DAS for almost the same reason for their child. It was quite awhile ago and I can't recall if they ever posted the outcome though.

sookie 06-18-2014 06:34 PM

Maybe a vacation such as Disney isn't suitable for you. I'm sorry.

The only thing I can think of is:

-Consider going during a low(er) season.
-Don't even think of going during flu / cough / cold season. That means at least October - February (or longer). That will kick out some of the low season options for you.
-Keep up on all vaccines.
-Continue to use your mask and gloves.
-Take all your meds.
-Talk to your doctor about your planned trip. He or she may have additional advice for you about going to a crowded theme park.

Sorry for the bad news. Do you really want to risk it if your immune system is as bad as you indicate it is?

Random Ninja 06-18-2014 06:54 PM

If you haven't already done so, check out the DAS sticky; it's got a lot of good info in it. A lot of people have reported that cms see the ECV, tune you out, and say the ECV is all you need. If you think that the DAS will help you, be prepared to explain why your needs are not meet by just the ECV. I had a "fun" time trying to explain that a wheelchair/ECV did not meet my needs (I'm boarder-line arthritic). Don't mention stamina at all. You should probably mention that it's a danger to your health to be packed in with group of people for a long period of time and that you need a safe place to reduce the amount of time you spend in a slow moving mass of humanity.

I wear a mask on a regular basis for airborne allergies and would recommend anyone immunocompromised to wear one as well. WDW is a germy place all over. When's your trip? You'll want a lighter mask in warmer months as you will end up with your own ecosystem if it doesn't breathe enough.

I completely understand being scared to leave the house for medical reasons. The reason I wear a mask regularly is because I have severe airborne allergies to tapioca, mustard, and ethyl alcohol. This means I am allergic to the smell of hot dogs, french fries, and hand sanitizer. I can't get near a McDonalds bag without a mask. (There's a mask in my bag right now.) Sometimes you just have to take a chance and live your life with fear on the back burner. Don't let it get you down. Feel free to PM me if you ever just need to talk/vent.:goodvibes

mackay_j 06-19-2014 04:08 AM

when are you going? I will be there in Aug and have similar issues so I can get back to you by on my return

Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only.

I asked a similar question a while back only to mostly have the reply that I shouldn't go - A decision I have allowed my doctors to make not members of a forum. I did get several PM's from people (who are fed up with the attitude of some on here to non spectrum problems so now won't post but PM insead) who have similar problems who will get back to me once they travel in July. I will also let you know what happened with them.

Jonell 06-19-2014 08:26 AM

Quote:

Originally Posted by Random Ninja (Post 51679060)
If you haven't already done so, check out the GAC sticky; it's got a lot of good info in it. A lot of people have reported that cms see the ECV, tune you out, and say the ECV is all you need. If you think that the DAS will help you, be prepared to explain why your needs are not meet by just the ECV. I had a "fun" time trying to explain that a wheelchair/ECV did not meet my needs (I'm boarder-line arthritic). Don't mention stamina at all. You should probably mention that it's a danger to your health to be packed in with group of people for a long period of time and that you need a safe place to reduce the amount of time you spend in a slow moving mass of humanity.

I wear a mask on a regular basis for airborne allergies and would recommend anyone immunocompromised to wear one as well. WDW is a germy place all over. When's your trip? You'll want a lighter mask in warmer months as you will end up with your own ecosystem if it doesn't breathe enough.

I completely understand being scared to leave the house for medical reasons. The reason I wear a mask regularly is because I have severe airborne allergies to tapioca, mustard, and ethyl alcohol. This means I am allergic to the smell of hot dogs, french fries, and hand sanitizer. I can't get near a McDonalds bag without a mask. (There's a mask in my bag right now.) Sometimes you just have to take a chance and live your life with fear on the back burner. Don't let it get you down. Feel free to PM me if you ever just need to talk/vent.:goodvibes

This is correct. If the CMs at GR see you on a ECV then they WILL tune out all other reasons you need a GAC. This happened to us twice. My DH uses a ECV but his need for a GAC is not mobility related. When the CMs saw the ECV they quickly denied him. Just go to GR without the ECV and the process will go smoother. Have a great trip.:goodvibes

Mrsjvb 06-19-2014 08:42 AM

Quote:

Originally Posted by mackay_j (Post 51680890)

Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only.

.

Misconception. that being said the fact is the new DAS is more restrictive and is no longer an option for people who were able to utilize the old GAC due to the evolvement of it into a FP by default

Last time I went, I was sent to wait in the HA section for one ride or another. following the CM instruction DH and I made our way to the painted off section next to another family( 2 A 2 K.) whereby I was immediately SCREAMED at by the women to 'stay away form my kid! he cannot be near germs!!!!" the CM told the woman that I HAD to be there as all sections had to be used and sorry but he could not leave it empty. she went off on him too and started screaming( yes her voice was raised) that her husband was also at risk. and just kept going on.
the kid was not in a mask, or had any other precautions( I too am immunocompromised but not as badly as you and all my needs are met by my wheelchair)

It took everything I had to not point out that she and her family was SURROUNDED by germs, some of which came from areas of the country( and world for that matter) that her family had never been exposed to or had any hope of fighting off.

if your doctor says it's not a good idea, then don't go.

aaarcher86 06-19-2014 11:42 AM

Quote:

Originally Posted by mackay_j (Post 51680890)
when are you going? I will be there in Aug and have similar issues so I can get back to you by on my return Best not to discuss this on here as most seem to suggest that the das is now for spectrum issues only. I asked a similar question a while back only to mostly have the reply that I shouldn't go - A decision I have allowed my doctors to make not members of a forum. I did get several PM's from people (who are fed up with the attitude of some on here to non spectrum problems so now won't post but PM insead) who have similar problems who will get back to me once they travel in July. I will also let you know what happened with them.

Completely bogus. There are plenty of people dealing with non spectrum disabilities who obtain and utilize a DAS. It's issued for reasons prohibiting people from waiting in a standard line - that's it. Autism happens to be a large portion of people that fall into that category. I have never seen a single soul on this forum post or say that the DAS is only for the autistic, and most get pretty angry when someone posts a CM states it directly.

It's not issued if there are other means of accommodating someone (whether they like it or not). It's far better to go in with a reasonable expectation and a back up plan since everyone that wants a DAS doesn't receive one.

Disneychick75 06-19-2014 12:38 PM

Quote:

Originally Posted by aaarcher86 (Post 51683460)
Completely bogus. There are plenty of people dealing with non spectrum disabilities who obtain and utilize a DAS. It's issued for reasons prohibiting people from waiting in a standard line - that's it. Autism happens to be a large portion of people that fall into that category. I have never seen a single soul on this forum post or say that the DAS is only for the autistic, and most get pretty angry when someone posts a CM states it directly.

It's not issued if there are other means of accommodating someone (whether they like it or not). It's far better to go in with a reasonable expectation and a back up plan since everyone that wants a DAS doesn't receive one.

I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.

Mrsjvb 06-19-2014 12:51 PM

Quote:

Originally Posted by Disneychick75 (Post 51683962)
I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.

that is when you politely but firmly request to speak to their supervisor.

SueM in MN 06-19-2014 03:08 PM

Quote:

Originally Posted by Disneychick75 (Post 51683962)
I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.

Those reports were primarily in the first few weeks.
We are now more than 6 months out and I have not seen reports of people still saying that is happening.

Quote:

Originally Posted by Mrsjvb (Post 51684069)
that is when you politely but firmly request to speak to their supervisor.

Agree.

I think one of the reasons some people are not understanding the difference between 'condition' and 'needs related to a disability'

There have been quite a few posts where people are saying, "How do I get a DAS. I have xxxx (diabetes, MS, immune disorder, difficulty standing in one place - just to name a few recent ones) "

The correct answer is that guests need to explain their concerns/issues/needs related to waiting in line to the CM at Guest Relations. Not everyone with those conditions will need or get DAS. It really depends on what the guest's needs are and how they explain that to CMs.

Some posters are interpreting that 'message' as being told Guest Relations won't give them a DAS and that the message on the boards is "only autism gets a DAS."

That is very far from the truth - the message is that if you just go in to Guest Relations and say "I need DAS because I have this" you are likely to be told no. So, think about what the DAS provides (a place to wait outside of the line) and how that would be helpful to your disability related needs.

mackay_j 06-19-2014 03:27 PM

Quote:

Originally Posted by SueM in MN (Post 51685210)
Those reports were primarily in the first few weeks.
We are now more than 6 months out and I have not seen reports of people still saying that is happening.


Agree.

I think one of the reasons some people are not understanding the difference between 'condition' and 'needs related to a disability'

There have been quite a few posts where people are saying, "How do I get a DAS. I have xxxx (diabetes, MS, immune disorder, difficulty standing in one place - just to name a few recent ones) "

The correct answer is that guests need to explain their concerns/issues/needs related to waiting in line to the CM at Guest Relations. Not everyone with those conditions will need or get DAS. It really depends on what the guest's needs are and how they explain that to CMs.

Some posters are interpreting that 'message' as being told Guest Relations won't give them a DAS and that the message on the boards is "only autism gets a DAS."

That is very far from the truth - the message is that if you just go in to Guest Relations and say "I need DAS because I have this" you are likely to be told no. So, think about what the DAS provides (a place to wait outside of the line) and how that would be helpful to your disability related needs.

Sue this train of thought is actually coming from dis - Many times I have come across replies that include telling people they should not go at all!! (that should not be allowed on here - that is up to the person and their doctor/ family) to telling them they will not qualify for a Das. In fact after my post on here earlier today and one I posted previously asking for help on this and a related issue I have received various PM's telling me to give up asking on here and requesting to discuss off line and even 1 to thank me for trying to stand up to what is beginning to come across as bullying by those who feel more entitled than others to receive the DAS and even visit disney at all.

I completely agree that this is just hearsay and that Disney in fact takes every issues and hears what the clients are saying and requesting. But unfortunately this DIS attitude it is starting to give Dis disability boards a bad reputation. (even commented on now in other parts of dis and in other forums).
And it is a real shame as this was once the best place to get help with all issues regarding disabilities. Please put a stop to this attitude now

JenniBugInPink 06-19-2014 05:29 PM

Quote:

Originally Posted by aaarcher86 (Post 51678880)
I honestly, feel like it could go either way. It'd probably just be if the CM thinks it's possible to avoid germs/etc easier outside the lines. My first thought reading it all was that even with a DAS there's just no way to avoid crowds. There's really nothing in a line that isn't anywhere else you'd be waiting, and I'd actually think you'd be fine in the line since you could stay on your EVC and not touch anything. If you'd just be kind of sitting on an EVC not touching things outside the line, I think you could do the same thing inside it. Especially since you'd still be in a 15 or so minute line with the DAS. I remember someone posting about wanting a DAS for almost the same reason for their child. It was quite awhile ago and I can't recall if they ever posted the outcome though.

I'm sorry, I thought I posted that I don't take my ECV through the line with me. ECVs are way too big to comfortably go through most regular lines. It's nearly impossible to negotiate the turns without making a fuss and drawing even more attention than usual, which is bad enough as it is. I just park the thing and walk. I'm sorry, but I don't really understand what you mean about the 15 minute line with the DAS. I don't care about the time, what I'm trying to do is reduce the viral/bacterial burden. Smaller group = smaller chance of infection due to reduced viral/bacterial pathogen presence, especially airborne. The queue that sticks in my mind is Rock n' Roller Coaster where the line is bascially just doubled over and over and over on itself and you're breathing that air in that crowd and nobody's moving and you're just as smashed as you can be...:scared1:

Quote:

Originally Posted by sookie (Post 51678939)
Maybe a vacation such as Disney isn't suitable for you. I'm sorry. The only thing I can think of is:
-Consider going during a low(er) season.
-Don't even think of going during flu / cough / cold season. That means at least October - February (or longer). That will kick out some of the low season options for you.
-Keep up on all vaccines.
-Continue to use your mask and gloves.
-Take all your meds.
-Talk to your doctor about your planned trip. He or she may have additional advice for you about going to a crowded theme park.
Sorry for the bad news. Do you really want to risk it if your immune system is as bad as you indicate it is?

I've been an RN/BSN for over 25 years. I work in medical research. I've got my health care well in hand, thanks.

And yes, I'm willing to risk it. Life is for the living. My life will be a shortened one. Seriously, kidney disease will take me out one day, and I'm not programmed to live life on dialysis forever. I will gradually get less and less able to travel, and my immunity isn't going to improve. We're DVC members, and I don't plan to sell anytime soon. It's worth the risk to me. I've lived through an appendectomy and two upper respiratory infections, though one got kinda' dicey. I will not live life in my bedroom. THAT is not worth it to me. I'm VERY careful when I'm not at home, and I'll continue that in the germ pit at WDW, but I'm going! :rotfl:

Quote:

Originally Posted by Random Ninja (Post 51679060)
If you haven't already done so, check out the DAS sticky; it's got a lot of good info in it. A lot of people have reported that cms see the ECV, tune you out, and say the ECV is all you need. If you think that the DAS will help you, be prepared to explain why your needs are not meet by just the ECV. I had a "fun" time trying to explain that a wheelchair/ECV did not meet my needs (I'm boarder-line arthritic). Don't mention stamina at all. You should probably mention that it's a danger to your health to be packed in with group of people for a long period of time and that you need a safe place to reduce the amount of time you spend in a slow moving mass of humanity.
I wear a mask on a regular basis for airborne allergies and would recommend anyone immunocompromised to wear one as well. WDW is a germy place all over. When's your trip? You'll want a lighter mask in warmer months as you will end up with your own ecosystem if it doesn't breathe enough.
I completely understand being scared to leave the house for medical reasons. The reason I wear a mask regularly is because I have severe airborne allergies to tapioca, mustard, and ethyl alcohol. This means I am allergic to the smell of hot dogs, french fries, and hand sanitizer. I can't get near a McDonalds bag without a mask. (There's a mask in my bag right now.) Sometimes you just have to take a chance and live your life with fear on the back burner. Don't let it get you down. Feel free to PM me if you ever just need to talk/vent.:goodvibes

Thanks so much for the suggestion about NOT going to Guest Services WITH the ECV. That's so smart! :idea: I know that they see a zillion people, and it does seem that their training has been skewed to ASD, at least from what I have read here and elsewhere.

We're going Sept 27 - Oct 5, which is our usual time. We go then because it's among the least crowded weeks of the year and I LOVE the F&W Festival and MNSSHP. :drinking:

As far as the mask goes, I have to use an N95 respirator rated for healthcare use in order to be sure that it will block pathogens (otherwise, it won't do any good in preventing infection) and it has to have a complete seal to my face (argh! can you say hot and sweaty? :headache:). When they get damp and icky, I have to change them.

Ok, more replies in a few.

JenniBugInPink 06-19-2014 06:00 PM

Quote:

Originally Posted by Jonell (Post 51681873)
This is correct. If the CMs at GR see you on a ECV then they WILL tune out all other reasons you need a GAC. This happened to us twice. My DH uses a ECV but his need for a GAC is not mobility related. When the CMs saw the ECV they quickly denied him. Just go to GR without the ECV and the process will go smoother. Have a great trip.:goodvibes

Again, I think this will help the CM focus on what I'm saying rather than what they're seeing, especially since my ECV is PINK!

Quote:

Originally Posted by Mrsjvb (Post 51682000)
Misconception. that being said the fact is the new DAS is more restrictive and is no longer an option for people who were able to utilize the old GAC due to the evolvement of it into a FP by default
Last time I went, I was sent to wait in the HA section for one ride or another. following the CM instruction DH and I made our way to the painted off section next to another family( 2 A 2 K.) whereby I was immediately SCREAMED at by the women to 'stay away form my kid! he cannot be near germs!!!!" the CM told the woman that I HAD to be there as all sections had to be used and sorry but he could not leave it empty. she went off on him too and started screaming( yes her voice was raised) that her husband was also at risk. and just kept going on.
the kid was not in a mask, or had any other precautions( I too am immunocompromised but not as badly as you and all my needs are met by my wheelchair)
It took everything I had to not point out that she and her family was SURROUNDED by germs, some of which came from areas of the country( and world for that matter) that her family had never been exposed to or had any hope of fighting off.

if your doctor says it's not a good idea, then don't go.

My MDs (I have quite the group of them, Family Practice, Nephrologist, and Rheumatologist are the star players, with others playing minor roles) are all aware that I can't live in a bubble. The Rheumy and I are talking about the possibility of administering IgG prior to the trip to boost immunity a little. As I said, I have my health care well in hand. I'm lucky - not everyone has their own RN with this many years experience who is as skilled in research.

Quote:

Originally Posted by Disneychick75 (Post 51683962)
I've read both here and on other forums that CMs have told guests that the DAS is for autism. They were wrong but if you come up against one of these CMs, you're out of luck.

Quote:

Originally Posted by SueM in MN (Post 51685210)
Those reports were primarily in the first few weeks.
We are now more than 6 months out and I have not seen reports of people still saying that is happening.
Agree.
I think one of the reasons some people are not understanding the difference between 'condition' and 'needs related to a disability'
There have been quite a few posts where people are saying, "How do I get a DAS. I have xxxx (diabetes, MS, immune disorder, difficulty standing in one place - just to name a few recent ones) "
The correct answer is that guests need to explain their concerns/issues/needs related to waiting in line to the CM at Guest Relations. Not everyone with those conditions will need or get DAS. It really depends on what the guest's needs are and how they explain that to CMs.

Some posters are interpreting that 'message' as being told Guest Relations won't give them a DAS and that the message on the boards is "only autism gets a DAS."

That is very far from the truth - the message is that if you just go in to Guest Relations and say "I need DAS because I have this" you are likely to be told no. So, think about what the DAS provides (a place to wait outside of the line) and how that would be helpful to your disability related needs.

You see, that's all I need - a place to wait outside of the line. I'll wait however long - this is not a time issue!! So many people I've seen complain seem to want to cut the time they wait. I just don't want to wait in the throng of people. I'll go wherever they tell me, do whatever they'd like, I just want to be out of the way of the huddled masses. This used to be possible. If it is no longer possible, I will be disappointed, as I don't think that's how the DAS is meant to work. I don't think it is meant to make things worse, and I know it is making things worse for some because CM are not listening adequately to guests. They are looking, but not listening. :listen:

Quote:

Originally Posted by mackay_j (Post 51685362)
Sue this train of thought is actually coming from dis - Many times I have come across replies that include telling people they should not go at all!! (that should not be allowed on here - that is up to the person and their doctor/ family) to telling them they will not qualify for a Das. In fact after my post on here earlier today and one I posted previously asking for help on this and a related issue I have received various PM's telling me to give up asking on here and requesting to discuss off line and even 1 to thank me for trying to stand up to what is beginning to come across as bullying by those who feel more entitled than others to receive the DAS and even visit disney at all.

I completely agree that this is just hearsay and that Disney in fact takes every issues and hears what the clients are saying and requesting. But unfortunately this DIS attitude it is starting to give Dis disability boards a bad reputation. (even commented on now in other parts of dis and in other forums).
And it is a real shame as this was once the best place to get help with all issues regarding disabilities. Please put a stop to this attitude now

As you can see in this thread, I've been told not to go, and I've been made to feel that perhaps I shouldn't even ask about a DAS. Worry not as I am not easily deterred. I'm a tough old bird. If I wasn't though, my feelings could have been hurt, or perhaps my plans could have even been changed. That isn't what should happen here. This should be a place of information and support. Dealing with the crap life has dealt us at Disney is hard enough. Let's not dish more crap to each other on top of that, ok.

Love to all the folks to go to a Disney park with less than a marathoner's body or an astrophysicist's brain. May Disney make you feel so special that you don't notice. :hug:

Mrsjvb 06-19-2014 06:14 PM

the entire park is crowded. even if you do find a quiet out of the way spot to wait out your time, the FP line will still have to be navigated and the wait times can be 30 minutes, getting to the FP entrance you will be surrounded by people.

it may not be possible to avoid the huddled masses no matter what accommodations you get.


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