Adult Wish Trip? Who to contact?

[Elvskitty]

2 weeks ago my husband was given a terminal diagnosis. Our carefully planned 10 year anniversary trip looks to have become more of a farewell trip. He has Lou Gehrig's disease and is already starting to show problems with weakness and fatigue. We've rented him an ECV to give him a prayer of tolerating the long distances in the parks. I have been hoping to make it something of a Wish Trip, ie get him some front of line access as I have seen done for terminal kids. Is this something Disney only does for terminal kids or can it be for adults too? I know there are companies out there that do adult wish trips, but we don't need the kind of assistance most of them seem to do - like paying for flights, etc. Our trip is already set up and paid. I just want to make his trip as special as possible and get him onto his favorite rides while he still can. Favorite rides like Haunted Mansion that require a transfer are not going to be possible much longer for him.

Advice I got from DVC member services (we bought about 9 mos ago and this is our first DVC trip) was just to tell the CMs at the park and the concierge. Is there someone that needs advance notice? Any suggestions of things to do for him?

Thank you everyone. Hubby and I are looking forward to escaping into some magic for a week before returning to the reality of shopping for wheelchair vans and remodeling the house for accessibility.

 

[SueM in MN]

Sorry to hear about your family's news. I think it is a good idea to get away on a little trip away after a life changing diagnosis.

Follow the link in my signature to the disABILITIES FAQs thread. Post #6 of that thread is about Guest Assistance Cards. Although they are not 'Front of the Line' cards like are given to children on Make a Wish trips, a Guest Assistance Card will be helpful in meeting his needs.
He will need to explain a bit about his issues to the CMs at Guest Relations to request a card (his needs, not his diagnosis - the CMs are not medically trained and hearing ALS/Lou Gehrig Disease won't tell them what they need to know about his needs).

You may also want to look into a touring plan like Tour Guide Mike ( a Theme Park sponsor). Many people who have used Guest Assistance Cards (GACs) in the past have found TourGuide Mike to be even more helpful. A GAC will only help you in attractions, but TourGuide Mike will help you to be in the least busy part of the least busy park. This means you will have shorter waits for everything, including things like bathroom and restaurant lines that a GAC won't help with.

There is more information on the disABILITIES FAQs thread that will be helpful to you as well; there is a list for each park on the 2nd page of the FAQs thread that lists which rides are ECV accessible, which have a wheelchair accessible ride car and which are difficult transfers. (Haunted Mansion is actually one of the easier transfers since the ride car seat is high and a guest can over from a wheelchair or ECV seat without having to move way down like in Pirates and similar low boat rides).

 

[teskak]

You might also benefit from looking over on the Coping & Compassion boards as there was a couple of threads from a caregiver who walked the final 12 months with her husband who had Lou Gehrig's disease.

They also did a couple of WDW trips, including one shortly before he went to hospice. There might be something in those threads for how they went about managing the issues that went with the diagnosis.

 

[cm8]

2 weeks ago my husband was given a terminal diagnosis. Our carefully planned 10 year anniversary trip looks to have become more of a farewell trip. He has Lou Gehrig's disease and is already starting to show problems with weakness and fatigue. We've rented him an ECV to give him a prayer of tolerating the long distances in the parks. I have been hoping to make it something of a Wish Trip, ie get him some front of line access as I have seen done for terminal kids. Is this something Disney only does for terminal kids or can it be for adults too? I know there are companies out there that do adult wish trips, but we don't need the kind of assistance most of them seem to do - like paying for flights, etc. Our trip is already set up and paid. I just want to make his trip as special as possible and get him onto his favorite rides while he still can. Favorite rides like Haunted Mansion that require a transfer are not going to be possible much longer for him.

Advice I got from DVC member services (we bought about 9 mos ago and this is our first DVC trip) was just to tell the CMs at the park and the concierge. Is there someone that needs advance notice? Any suggestions of things to do for him?

Thank you everyone. Hubby and I are looking forward to escaping into some magic for a week before returning to the reality of shopping for wheelchair vans and remodeling the house for accessibility.

 

[nursekimber]

2 weeks ago my husband was given a terminal diagnosis. Our carefully planned 10 year anniversary trip looks to have become more of a farewell trip. He has Lou Gehrig's disease and is already starting to show problems with weakness and fatigue. We've rented him an ECV to give him a prayer of tolerating the long distances in the parks. I have been hoping to make it something of a Wish Trip, ie get him some front of line access as I have seen done for terminal kids. Is this something Disney only does for terminal kids or can it be for adults too? I know there are companies out there that do adult wish trips, but we don't need the kind of assistance most of them seem to do - like paying for flights, etc. Our trip is already set up and paid. I just want to make his trip as special as possible and get him onto his favorite rides while he still can. Favorite rides like Haunted Mansion that require a transfer are not going to be possible much longer for him.

Advice I got from DVC member services (we bought about 9 mos ago and this is our first DVC trip) was just to tell the CMs at the park and the concierge. Is there someone that needs advance notice? Any suggestions of things to do for him?

Thank you everyone. Hubby and I are looking forward to escaping into some magic for a week before returning to the reality of shopping for wheelchair vans and remodeling the house for accessibility.

Hi, I'm Kim and I found this list, I hope one of these agencies can help. My prayers go out to you and your husband. I do understand what your going through, we are being sponsored by Make A Wish, for our youngest daughter.
F O R A D U L T S
C O M P A S S ION P A R T N E R S
407-396-6065
Provides admission to several parks in Central Florida including Disney Theme Parks, Sea
World, Universal Studios Orlando and Busch Gardens. Passes are available for those facing a
life-threatening or terminal illness and their family members as well.
C R O S S I N G T HE F I N I S H L I N E
267-708-0510
www.crossingthefinishline.org
Offers a one-week excursion for adults between the ages of 24 and 50 that have been
diagnosed with cancer. Patients must reside in Delaware, Pennsylvania or New Jersey.
T H E D R E A M F O U N D A T I O N
805-564-2131
www.dreamfoundation.com
Grants final wishes to terminally ill adults over the age of 18.
F O R E V E R Y O U N G
901-299-7515
www.foreveryoungseniorwish.org
A non-profit organization whose purpose is to reach out to residents of nursing homes, assisted
living facilities, hospice programs, home-bound individuals and adult day care facilities,
regardless of age, to help make their dreams come true.
H E A D T O H O L L YWOOD
KenH2H@gmail.com
www.headtohollywood.com
A non-profit program that provides comfort and escape to survivors of cancerous and noncancerous
brain tumors by giving them an all-access-pass inside a world usually reserved for
celebrities -- including attendance at Hollywood events and parties, VIP access to television
and movie sets, personal meetings with stars, as well as access to celebrity spa and beauty.
N E V E R T O O LAT E
317-823-4705
www.nevertoolate.org
A non-profit organization that grants wishes to the elderly (over 65) or to those that have a
terminal illness. They will also grant wishes to a permanent nursing home resident regardless
of their age.
R E E L ING A N D H E A L I N G M IDWE S T
866-237-5725
www.reelingandhealing.org
A non-profit organization that hosts several fly-fishing retreats for women and men with
cancer throughout the year. Also offer a retreat for family, friends and caregivers once each
year as well.
S E C O N D WI N D D R E A M S
678-624-0500
www.secondwind.org
A non-profit organization that grants wishes to older adults living in eldercare facilities or in
hospice care. They have granted wishes throughout the United States, Canada as well as India.
S U N S E T WI S H F O U N D A T I ON
336-978-WISH
www.sunsetwishfoundation.org
Provides wishes to adults 18 years and older who have a prognosis of less than one year. Must
be a resident of the United States.
U N I T E D S P E C I A L S P O R T S M E N A L L I A N C E
800-518-8019
www.childswish.com
A non-profit Christian organization that coordinates with other agencies to grant terminally ill
and disabled sportsmen and women an outdoor adventure of their dreams.

 

[dclfun]

Sending support. I also have ALS but am still alive after 8 years. I do use a ventilator but still get around in a power wheelchair and visit Disney often ( we live locally). There is no front-of-the-line GAC for adults. Only the wish kids can have that particular verbiage on their GAC and it's only for use during their wish trip..so if they go back again, they're not eligible for that kind of special assistance. Still, Disney isn't all about getting on rides quickly. Savor your time together and allow your husband to take things at his pace. He will likely tire more easily. Make use of First Aid if he needs to rest during the day. I had an online friend, Ernie Wallengren, who had 5 children, was a television script writer, lived in Calabasas, California, and who did a documentary for TV about his disability and coping ( you might catch it some day as it's still being aired). He was also a DVC owner and the first thing he did when he got his diagnosis was to take his family to WDW. He was in an ECV by then and also had quite a bit of spasticity which made movement difficult. He is gone now as he chose not to use artificial ventilation but I know how much that trip meant to him and his family as he was still able to participate even though in a more limited way. So I hope you have a wonderful trip and make some beautiful memories together. ---Kathy