Brain tumour guest assistance

[Joannemimnagh]

HI, my husband has a brain tumour and epilepsy as a consequence. We are due to visit WDW in July/August this year. I was just wondering what others could tell me in terms of guest assistance. I am worried about the heat and tiredness causing seizures, this is a really special family trip after two lots of brain surgery and radiotherapy for us and I want it to be special. I feel bad if we might get special treatment, my husband's only visible signs of illness are his massive scar across his head. Any advice welcome

 

[quasar4legs]

Hi,
I am sorry things have been so difficult for your husband and you and I can understand the need to have an extra special trip.
Hopefully someone that can help you will be along soon but if you post this question on the disabilities board there are lots of lovely people there that will have all the info you need regarding guest assistance etc.

Wishing you and your husband a magical trip

Take care
Quasar

 

[mommasita]

to the DIS boards. I am so sorry to read about your difficult times. Quasar is so right in heading to the Disability boards. There are so many experienced people there, who can most definitely lead you in the right direction.

I have had 2 brain surgeries myself in the past couple of years, and know exactly what you mean about the hidden disability people don't see. It is so real, but not like a cast on your arm/leg. Even close family have had difficulty with this, and my Dr had to step in to explain it to them.

Having said that, you are more than welcome to continue posting here at any time.

 

[quasar4legs]

to the DIS boards. I am so sorry to read about your difficult times.

Having said that, you are more than welcome to continue posting here at any time.

Yes thanks for saying that Mommasita.
Please do post if you need to 'talk'. I was not trying to send you away, my apologies if my message read that way, I just wanted you to be able get the information you needed.

Hope someone has been able to help
Quasar

 

[wildeflowers]

Hi, Joanne. My guess is you will find Disney to be very accommodating. I know that I've needed medical assistance in the past and they were wonderful.

My son had a brain tumor as well and we are planning a trip for late June. Mommasita you are so right about it being a "hidden" disability. To look at my son, you would never know, even his scar is hidden mostly by his hair.

I think the key is to make sure that you take it easy. Take frequent breaks in air conditioned places. Have him drink LOTS of water. Being dehydrated can trigger seizures. Don't think twice about taking advantage of any benefit they can offer you. His health comes first, and Disney is known for helping and understanding when you have special needs.

I wish you all the best and a wonderful time.

 

[mommasita]

Hi, Joanne. My guess is you will find Disney to be very accommodating. I know that I've needed medical assistance in the past and they were wonderful.

My son had a brain tumor as well and we are planning a trip for late June. Mommasita you are so right about it being a "hidden" disability. To look at my son, you would never know, even his scar is hidden mostly by his hair.

I think the key is to make sure that you take it easy. Take frequent breaks in air conditioned places. Have him drink LOTS of water. Being dehydrated can trigger seizures. Don't think twice about taking advantage of any benefit they can offer you. His health comes first, and Disney is known for helping and understanding when you have special needs.

I wish you all the best and a wonderful time.

I am sorry to hear about your son. Keeping you in my thoughts and prayers.

You are right. The hair covers almost all of it, except for a few inches. I am NOT one to whip up my hair to show, I am glad for this. But, as my Dr said, if you were wearing a cast on your leg/arm, then it would be different. The same as people judging ones who rent scooters or the like. I went out last year before all my hair grew back, and it was about 100 degrees, my scar showed BIGTIME. This ignorant woman in the grocery store said I should cover it up, how ugly is that. I put her in her place fast enough. Still though, I am marked by this, and am constantly putting my hair over it. I hate questions from strangers, and the look they give you when they find out why it is there.

I wish you the best of luck.

 

[mommasita]

Yes thanks for saying that Mommasita.
Please do post if you need to 'talk'. I was not trying to send you away, my apologies if my message read that way, I just wanted you to be able get the information you needed.

Hope someone has been able to help
Quasar

No no, I did not read it that way. I just wanted to extend your koala welcomes and hugs

 

[DisneyFairytale]

HI, my husband has a brain tumour and epilepsy as a consequence. We are due to visit WDW in July/August this year. I was just wondering what others could tell me in terms of guest assistance. I am worried about the heat and tiredness causing seizures, this is a really special family trip after two lots of brain surgery and radiotherapy for us and I want it to be special. I feel bad if we might get special treatment, my husband's only visible signs of illness are his massive scar across his head. Any advice welcome

I would take advantage of the electric scooter rentals. That will allow him to go through the park and trip without walking all day and being fatigued. I did after I had my pelvic fracture and I was just starting to walk again. I knew I wasn't fit enough to be able to handle the full 8 hour walking days, so we rented a scooter, and it was absolutely fantastic.

 

[wildeflowers]

I am sorry to hear about your son. Keeping you in my thoughts and prayers.

You are right. The hair covers almost all of it, except for a few inches. I am NOT one to whip up my hair to show, I am glad for this. But, as my Dr said, if you were wearing a cast on your leg/arm, then it would be different. The same as people judging ones who rent scooters or the like. I went out last year before all my hair grew back, and it was about 100 degrees, my scar showed BIGTIME. This ignorant woman in the grocery store said I should cover it up, how ugly is that. I put her in her place fast enough. Still though, I am marked by this, and am constantly putting my hair over it. I hate questions from strangers, and the look they give you when they find out why it is there.

I wish you the best of luck.

Thanks, Mommasita, I will as well for you. He is doing quite well considering.

You know, there will always be obnoxious people. One thing I've learned is their attitudes can not touch me. They have no bearing on me whatsoever. Their ignorance merely shows their lack of class, lack of dignity, and lack of compassion. I am so sorry that woman was so awful and I hope you can forget all about her, and I hope that the OPs husband doesn't think twice about what someone may think if he decides to get a scooter, or any other help that he would need.

 

[wildeflowers]

stupid double post, sorry

 

[glammadiva]

Please let Disney know about your special needs and they will go out of their way to help you. I agree about the scooter rental and the hydration. I would time liquid breaks every hr. I time my family breaks every 2 hrs, but I have a friend like your hubby and so I suggest mandatory hour to keep seizures at bay. You will need to keep hydrated as well and keeping a hydration schedule helps. Make sure you take afternoon breaks at your hotel to enjoy the pool or naps and don't worry. You will have a wonderful trip!

 

[nana2tots]

First all, I am so sorry about your DH.We took our Daughter, Sandi to Disney one month after she had her 1st Brain Tumor surgery, and we went up to Guest Services after beening in the heat for 2 days, and they let us all go to front of short line. After doing that, we never ever had to wait in line, after they seen her long scar.
I wish you guys tons of Fun, and try to keep lots of water for your DH. Let me know how your trip went with lots of pics. Give your DH a big Disney hug from me.

 

[rndmr2]

We had 2 scooters on our past trip, one for MIL and one for my BIL's Dad. There were 7 of us total and they each had a soft sided cooler/insulated tote bag that they kept in the basket with bottles of water, that really worked well for us to keep hydrated, we would fill them at water fountains or CS places as we finished them. Not sure where you are staying but we had a fridge and would put them in the freezer the night before and they stayed cold all day (sometimes even mostly frozen for the better part of the day)