Not sure where to start

[4andcounting]

Meant to be flying to Orlando on Saturday but my 38 year old husband had a stroke last week and is in hospital.
Doctors are pleased with his progress so far and are happy for him to travel once home (next 8 weeks).
We’re going to make my marathon weekend solo trip into a family trip instead.
I’ve thought of things like insurance, airport assistance and accessible rooms.
But i’m sure there a lots of things i’m not thinking of (this is a steep learning curve for us all).
Any advice or tips would be very very welcome 😊😊
Anyone who knows me in real life please keep this under your hat x

[hipthehippo]

Hi! I'v just seen your post - and that no one had replied I'm so sorry to hear about your husband, but am glad to hear he's making good progress. Unfortunately, I'll be useless at trying to help, but I would suggest thinking about renting an ECV if you're looking at airport assistance. Even though sometimes they can be a difficult as you become almost "invisible" when your using one, it may be of help if he struggles with stamina, or shouldn't do too much. It also gives a valuable place to "park up and sit down" without having to wait for someone to move so you can sit down. I also feel more in control - being pushed in a wheelchair makes me feel very nervous and out of control - yes, yes, I'm a control freak!
Just wanted to wish you both well - don't forget to look after yourself too xx

[4andcounting]

Thanks so much for your reply.
He’s already been looking up ECV rentals online, his beloved motorbike is going to have to go (and we’re still not sure he’ll ever drive again) so think he’s seeing this as some sort of replacement!
Have been scouring the special needs threads to get as much knowledge as possible 😊

[hipthehippo]

Aggh. He must be devastated... funnily enough I was looking at folding ECVs - don't ask me why - I don't need one yet - and found that there were some that fold at a touch of a button and pretty much end up the size of slightly bigger than cabin luggage - they fold up in such a way that they can just be pulled like regular wheeled luggage too. I think that might be something I'll have to aspire to

I use an ECV when we go to Orlando because I just can't keep up and end up being in pain. This year we have the added fact that I very probably have ME. I know a lot of people say walk so you now your limits, but I'm aware that my limits are pretty crap right now. Last year we hired from Florida Mobility and they were really good to us. There's just DD and me and she has hypermobility so we need to be careful. We found that they have a fairly lightweight ECV (the Buzzzaround) that we could lift in and out of the Tahoe we had at first and then the 7-seater we ended up with (mechanical fault). It fitted into both boots and we just left the ECV in the boot and took the battery indoors to charge. Not sure if you're staying on site or not - if you're on site, I'm guessing weight of the ECV won't be an issue as all the buses can take ECVs. Just to note though, Disney doesn't always have accessible charging points for batteries in the parks (make sure you take the charging cable when you go out) - how far you can go depends on your weight and the terrain. Universal is better for charging.

Most restaurants at Disney won't allow you to take an ECV inside - you'll have to park it outside and walk in, unless there's outside seating and you aren't gasping for the aircon.

Tell your hubby he's going to need a lot of patience with the people who just walk in front of him - especially those that will look at him and still walk in front!

I don't think there's much else I can add. He won't need a DAS if he's in an ECV.

Oh yes! - If you're offsite and driving into the parks, if you don't have a blue/red badge by the time you go, if you say you have an ECV in the back of the vehicle they will direct you to overflow medical parking. Spaces are bigger and because you won't be able to get the ECV on a tram it's closer to ride in. The downside is that often those who have to walk may not have a tram stop close enough and will have to walk to the park entrance.

Not sure how much this will help but, I think it's about going with what you can manage, not what you've been able to do in the past and what you think you should be able to do. We first went such a long time ago and i was 11 stone heavier than I am now but I could walk the parks. Now, not so much - I'd be lucky to get down Main Street before I lost the ability to walk in a straight line

[4andcounting]

Thanks Hip, that’s really helpful.
The doctors have said he will definitely walk again (though i’m Doubtful he’ll manage whole days in the park without ECV/wheelchair.
They aren’t giving much hope that he will regain use of his arm.
At the moment he can stand and walk with a stick (to end of ward and back) we’ll be staying onsite which as you say should make some things easier.
As we have 4 children and I have an aggressive form of arthritis I think an ECV may be more practical for parks and maybe some sort of folding wheelchair for airport.
Will have much better idea once he completes his stint at inpatient rehab.

[Merryweather]

Hi - sorry to hear how ill your husband has been but glad to hear he’s making progres. Noticed in your last post about a folding wheelchair at the airport - if he can walk a bit by the time you go you can get assistance at the airport who will take him by wheelchair to the gate and you will be met at the other end with the same service. If you are flying into MCO you can be taken to the magical express which will take you to your hotel. Last year I booked an ECV from a company called Buena Vista and they had the ECV waiting for me at POFQ when I arrived and picked it up from there the day after I left. Also I did take the ECV into BOG and the Plaza last year but usually left it outside near the entrance. If it looks as if the charge is dropping any cast member can help you find a charging point, which are often near a restaurant or fast food place so you could get a coffee while you wait for the scooter to charge. There are quite a few charging points but they are not always easy to find - I’ve had to use them once or twice! Hope everything goes well for you all.

[hipthehippo]

Originally Posted by Merryweather

Last year I booked an ECV from a company called Buena Vista and they had the ECV waiting for me at POFQ when I arrived and picked it up from there the day after I left. Also I did take the ECV into BOG and the Plaza last year but usually left it outside near the entrance. If it looks as if the charge is dropping any cast member can help you find a charging point, which are often near a restaurant or fast food place so you could get a coffee while you wait for the scooter to charge. There are quite a few charging points but they are not always easy to find - I’ve had to use them once or twice! Hope everything goes well for you all.

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So glad to hear that you had help for charging points - I really struggled last year - perhaps it was just bad luck on my part. I can mobilise but have to admit I was concerned about those that could not do so. TBH, I would rather leave the ECV outside - some of those tables are so close together!

[4andcounting]

Great advice Merryweather, will be showing your messages to my husband, hoping they will help keep him positive 😊

[Merryweather]

Was ok at BOG as went right through to the library but agree with you about the rest. Did, however, find out that if you can’t walk it is possible to use the ECV to get to your table and once you are seated someone will move the ECV for you until you’re ready to leave. Didn’t need to use this as, like you, I can usually walk in.

[crux]

I had to start using an ECV in WDW four years ago after being diagnosed with both COPD and a unusual type of Asthma following acute breathing difficulties. I have used Apple Scooters every year - they were the cheapest by a mile the first time I used them and although they are no longer as cheap as they were, they are still the cheapest of the on-site authorised suppliers.

As has already been said, make sure your husband realises once he's on the ECV he wears the cloak of invisibility - even when people see you, they still don't 'see' you. Take the charging cable/unit with you into the parks just in case you need it. A large rain poncho is advisable, one that will cover the ECV as well as your husband if it rains. If it's sunny, don't forget to fold down the seat, or keep it out of the sun - black ECV seats don't half get hot if left in the sun
I've bought a generic plastic cover for ECV controls, if there's a light shower it's a more comfortable way of keeping the rain off.

If your accomodation isn't already booked I would suggest an Epcot resort area hotel, which makes getting to EPCOT or Hollywood Studios easy for an ECV without having to rely on Disney Transport. Hubby can just ride to the parks whilst you either use the boats or walk. The Disney buses are fantastic for using the ECV most of the time and the drivers are superb, however at park closing time it can be a nightmare. If you plan to be in the Magic Kingdom most, then a monorail resort would also be sensible.

If you are hiring a car and plan to take the ECV in it, I'd suggest using a rental company that lets you choose the vehicle - such as Alamo at Orlando airport. That way you can pick a vehicle which has a flat boot/trunk which makes getting the ECV in and out much easier.

Once things have settled down, make sure you look into the PIP benefit. You should also look into a 'Blue Badge' - if your husband qualifies for either of the two PIP Mobility payments, then he will automatically qualify for a Blue Badge (and a disabled bus pass). You can then get the US equivalent Red Tag for your holiday.

There is also a pre-payment scheme for NHS prescriptions. I now have 11 drugs prescribed, but have an annual 'pass' which is just over £10 per month. You can also get a quarterly 'pass' if his prescriptions are short term. If he gets a collapsible walking stick, then get one which includes a plastic clip for keeping it together when collapsed - and don't lose the clip as you can't buy them on there own. Also, buy at least one spare walking stick to put in the suitcase - it's too easy to lose a walking stick, even when you rely on it. I left my last one on a tram in Amsterdam!