Big changes in how we will travel from now on...

[PNO4TE]

My husband suffered a massive brain stem stroke in January and is still recovering. We have gone out on a limb and are going ahead with our annual October trip to WDW. We have booked a 1 BR villa at Saratoga Springs (waitlisted at Kidani). This will come equipped with hand rails and that ought to be sufficient for Bob by then. Getting around WDW with an ECV will be our easiest way to go, I think, and we will make those arrangements.

It is the plane travel that has me concerned a bit. In addition to his medications (which I don't see as a problem), we will have a wheel chair (which I believe we can gate check) and a walker or cane. I am hoping that keeping the walker or cane with us on the plane will be an easy thing to accomplish.

My biggest concern is that he has a PEG tube inserted in his stomach. He is now eating with bolus feedings and not a pump so we don't need to worry about that anymore. However, there is also adult formula for his feedings and we will need over a case of those cans. Has anyone on here had experience flying with a PEG tube? How about with liquid formulas that are shrink-wrapped into a case? Anything that you can talk to us about would certainly make our planning much easier. Thanks!

 

[LisaTC]

I cannot respond to the PEG tube, but I will respond to the formulas by the case. The same with babies...I would ship it to your resort instead of trying to take it with you. So much easier.

I did find this with traveling with babies with a g-tube:

http://community.babycenter.com/post/a28067265/question_about_air_travel_with_gtube

 

[PNO4TE]

I cannot respond to the PEG tube, but I will respond to the formulas by the case. The same with babies...I would ship it to your resort instead of trying to take it with you. So much easier.

I did find this with traveling with babies with a g-tube:

http://community.babycenter.com/post/a28067265/question_about_air_travel_with_gtube

Thank you, Lisa... it is a start!!

 

[Escape2Disney]

Since the formula is a prescription, would it be possible to have the script sent to a pharmacy near the parks? That way you can either take a cab/bus to pick it up locally instead of having to worry about shipping?

 

[PNO4TE]

Since the formula is a prescription, would it be possible to have the script sent to a pharmacy near the parks? That way you can either take a cab/bus to pick it up locally instead of having to worry about shipping?

I might possibly be able to get our supplier to ship a case there. I need to check into that. Good idea!

 

[peemagg]

See if your supplier will send the case directly to the resort and not to a local drug store. I know a lot of them will for others needing special formulas.

 

[PNO4TE]

See if your supplier will send the case directly to the resort and not to a local drug store. I know a lot of them will for others needing special formulas.

Actually, ours are delivered right to our home. I will need to check with them to see if one case could go to a different address. Thanks for the suggestions.

 

[Bete]

your husband can handle a scooter. I don't know about the condition, but this could be tough on him and you. If you are older, it can be even tougher.

As he recovers I would try a scooter in a store (like Wal Mart, Target and so forth) environment. If he does all right there then step it up and go to a local zoo where you can rent a scooter and see how he does with a little longer day. Make sure this is doable. If there are issues with his scootering can you handle a wheelchair all day pushing, day after day at Disney? Be prepared. It sounds like it is just the two of you on this trip. If you have other help maybe none of this will matter. Read on.

I would not under your circumstances subject your husband to scootering on and off a Disney bus. For one, it's not easy to park a scooter on the bus. Two, he can't stay on the scooter for the ride on the bus. Keep in mind renting a scooter at the parks is first come, fist serve. You will need to be relatively early at the parks to make sure you secure a rental. Doing it this way means you will have to wheelchair him back and forth from the parks. Also, without a scooter at the resort you will be doing a wheelchair there, too. Your wheelchair can be held at the park rentals for scooters. If you want him to have a scooter at all times you may have to manuever the scooter yourself for him in those tough scenarios. It may even be a good idea for you to try the scooter yourself; so, you know what to expect.

Finally, can he scooter with crowds everywhere? with people darting right in front of him can he stop fast enough to avoid hitting someone? Can he get a scooter through the ride lines--there are a lot of twist and turns in some ride queues? I'm not sure you are doing any rides; so, this may not be an issue.

This all sounds like your first time with a wheelchair and scooter; so, I would make sure it's doable for you.

 

[PNO4TE]

your husband can handle a scooter. I don't know about the condition, but this could be tough on him and you. If you are older, it can be even tougher.

As he recovers I would try a scooter in a store (like Wal Mart, Target and so forth) environment. If he does all right there then step it up and go to a local zoo where you can rent a scooter and see how he does with a little longer day. Make sure this is doable. If there are issues with his scootering can you handle a wheelchair all day pushing, day after day at Disney? Be prepared. It sounds like it is just the two of you on this trip. If you have other help maybe none of this will matter. Read on.

I would not under your circumstances subject your husband to scootering on and off a Disney bus. For one, it's not easy to park a scooter on the bus. Two, he can't stay on the scooter for the ride on the bus. Keep in mind renting a scooter at the parks is first come, fist serve. You will need to be relatively early at the parks to make sure you secure a rental. Doing it this way means you will have to wheelchair him back and forth from the parks. Also, without a scooter at the resort you will be doing a wheelchair there, too. Your wheelchair can be held at the park rentals for scooters. If you want him to have a scooter at all times you may have to manuever the scooter yourself for him in those tough scenarios. It may even be a good idea for you to try the scooter yourself; so, you know what to expect.

Finally, can he scooter with crowds everywhere? with people darting right in front of him can he stop fast enough to avoid hitting someone? Can he get a scooter through the ride lines--there are a lot of twist and turns in some ride queues? I'm not sure you are doing any rides; so, this may not be an issue.

This all sounds like your first time with a wheelchair and scooter; so, I would make sure it's doable for you.

You have made valid points and I thank you. We have had experience with traveling with wheelchairs and scooters at WDW in the past so it won't be completely new to us. We usually rent from an outside company and he has used it on and off buses, as well as in and out of the resort rooms. I think we will be fine there.

My main concern is flying with the PEG tube and making certain he is comfortable with what will probably be new security issues. Not knowing how that will be handled is his biggest worry, I believe.

 

[Bete]

My main concern is flying with the PEG tube and making certain he is comfortable with what will probably be new security issues. Not knowing how that will be handled is his biggest worry, I believe.

but it may help going to the airport before the trip and talk with a TSA supervisor face to face and see what they will say and do with your hubby. Maybe, you can even prepare more for the occurence with their suggestions. This is not to say they will meet and discuss this with you, but it's worth a try. Bring a doctor's note and perhaps they may be more willing to tell and show what they will do beforehand. At least you would know what to expect to a degree. I have heard of some success with this technique, but it's been mostly with autistic children. In those cases some have even practiced going through all the steps like it's a real flight to get the child use to what's going to happen. If you go at a non-busy time they may do the same for you.

I have issues with my mom in this regard and for that reason we drive, now. This has become a very difficult situation for all.

I'm glad your husband is use to a scooter; it will be a big help that way. When I made my comments I did not know how experienced he was with one.

 

[PNO4TE]

but it may help going to the airport before the trip and talk with a TSA supervisor face to face and see what they will say and do with your hubby. Maybe, you can even prepare more for the occurence with their suggestions. This is not to say they will meet and discuss this with you, but it's worth a try. Bring a doctor's note and perhaps they may be more willing to tell and show what they will do beforehand. At least you would know what to expect to a degree. I have heard of some success with this technique, but it's been mostly with autistic children. In those cases some have even practiced going through all the steps like it's a real flight to get the child use to what's going to happen. If you go at a non-busy time they may do the same for you.

I have issues with my mom in this regard and for that reason we drive, now. This has become a very difficult situation for all.

I'm glad your husband is use to a scooter; it will be a big help that way. When I made my comments I did not know how experienced he was with one.

There would have been no way that you could have known, and you points were very well taken. Anyone who has never driven a scooter ought to try it once. It is hard at first!

Our DC airports are all over an hour away so a quick trip to discuss what will happen is not in the cards. But, our flight is at 6:15 in the morning so we can hope to have a fresh crew of TSA agents with a little patience with us as a newbie flyer with disabilities. We just booked a quick trip to Boston for next month and will see how that goes. That will be our "dress rehearsal" I guess!

 

[lost*in*cyberspace]

but it may help going to the airport before the trip and talk with a TSA supervisor face to face and see what they will say and do with your hubby. Maybe, you can even prepare more for the occurence with their suggestions.

Not at all necessary. TSA deals with people with all types of medical conditions every day. Read the link below and get to the airport in plenty of time before your flight and you'll be fine:

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

 

[Bete]

Not at all necessary. TSA deals with people with all types of medical conditions every day. Read the link below and get to the airport in plenty of time before your flight and you'll be fine:

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

by getting an idea of what the process is all about. Many of us including me fear the unknown, here. Sometimes, going through an exercise like this may help all concerned. I may be doing this with my mom because she's with Alzheimer's. I'm concerned with her reactions to the process. If you see how it works ahead of time it might ease the stress and so forth when you really do it.

No one wants to go the airport for the fun of it, but I think trying out the TSA process can help some people. Even just watching others go through it can help if you have a view of sorts to see what happens. If you have done it before, I suppose it gets easier and easier to do it. We don't fly much right now ourselves, but I'm contemplating a future trip and I sure want to know that my mom can handle the circumstance before I buy air tickets.

There have been some incidents that have really soured many of us on this process.

The OP is taking a trip to Boston; so, luckily, they will see the process before they go to Orlando.

 

[PNO4TE]

Not at all necessary. TSA deals with people with all types of medical conditions every day. Read the link below and get to the airport in plenty of time before your flight and you'll be fine:

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

TSA does deal with all conditions on a daily basis. Sometimes they deal better than others, as we all know. The link is very helpful, thank you.

by getting an idea of what the process is all about. Many of us including me fear the unknown, here. Sometimes, going through an exercise like this may help all concerned. I may be doing this with my mom because she's with Alzheimer's. I'm concerned with her reactions to the process. If you see how it works ahead of time it might ease the stress and so forth when you really do it.

No one wants to go the airport for the fun of it, but I think trying out the TSA process can help some people. Even just watching others go through it can help if you have a view of sorts to see what happens. If you have done it before, I suppose it gets easier and easier to do it. We don't fly much right now ourselves, but I'm contemplating a future trip and I sure want to know that my mom can handle the circumstance before I buy air tickets.

There have been some incidents that have really soured many of us on this process.

The OP is taking a trip to Boston; so, luckily, they will see the process before they go to Orlando.

I agree that some conditions and people respond well to a dress rehearsal of sorts for anything new. We are fortunate that my husband's cognitive abilities and communication have not been affected. He will easily comprehend everything that is happening and deal with it. I was just hoping that someone on the DIS had traveled with a PEG tube and could give us some idea what would probably happen during the TSA screening.

Thanks to all who have responded.

 

[peemagg]

When you get to the screening part, just alert the screener that he has a PEG tube and where it is located. After that everything should be fine.

 

[ToddyLu]

The addresses to the resorts are listed in the stickies...I think it may be the resort thread. You will need to have them put your check in date on the package. The sticky has great info. Good luck and have a great time together.

 

[PNO4TE]

When you get to the screening part, just alert the screener that he has a PEG tube and where it is located. After that everything should be fine.

Thank you!

 

[materise]

I am so sorry for your present sitution. As I traveled with my Dad I found bringing as little as possible and getting it at our destination was a great help; as a means to this end I use We Go Shop, Amy, 407-252-7525 she has a web site and if you call her she will shop for ANYTHING and deliver it directly to your hotel/resort and even run for you during yur stay! I give her 10+++ stars. She can be a great resource. Check out her site. Good Luck

 

[PNO4TE]

I am so sorry for your present sitution. As I traveled with my Dad I found bringing as little as possible and getting it at our destination was a great help; as a means to this end I use We Go Shop, Amy, 407-252-7525 she has a web site and if you call her she will shop for ANYTHING and deliver it directly to your hotel/resort and even run for you during yur stay! I give her 10+++ stars. She can be a great resource. Check out her site. Good Luck

We have used WeGoShop before too. I don't think she could shop for his "formula" but he could use Ensure+ for the week we are at WDW. That is definitely a possibility. Thank you for the idea!

 

[disneyworldmom2]

If you are going to have things shippd to you at Disney, or to a local pharmacy, make sure you take twice the amount that you think you will need with you on the plane. When I go through screening, I take out the meds, etc that I have that are over the limit right at the start, and tell the TSA agents that I have prescriptions that are over the limits. I don't know if this is possible, but if you coud get the pharmacy to put a label on individul containers, it might help. That way, there would be no question that they are medically necessary.