Vacation

[Matadog]

First post - does anyone have vacation ideas? Our family has always done beach vacations. My wife is looking into a cruise. I'm concerned with her lack of mobility and difficulty eating, it could be rubbing it in her face. Isn't one of the main attractions of a cruise all of the food? I was thinking more of a trip out to the big parks that we have never seen. We did some nice trips last year but I get freaked out not being around help if we need it.

 

[gooseberry]

So my question is, what did you do before she was diagnosed? Did you only do beach vacations? Do you have a wheelchair van ...and is she in a pwc full time? If so it might be easier to drive.

We travelled all over by ferry, van, plane, etc with my husband. The thing you need to be prepared for is itmis a lot of hauling of stuff and you cant travel as fast. We went to national parks, down some trails, went to the smokies, out west...really no different than before diagnosis. What was different was the amount of planning I needed to do and the increased amount of stuff we had to take.

 

[codyclan]

We did a cruise with my husband in December. At the time he used a power wheelchair, but could transfer independently. The cruise was amazing. We got a handicapped accessible room and the ship was extremely accessible. We got a room with a balcony and there wasn't even a lip going out. He was able to tool all around the boat independently--a real plus for him. He has limited arm and hand dexterity and he was usually able to operate the elevator independently, but on the few times he couldn't there was usually a steward nearby to help.

With regard to the food, we told them about his eating difficulties and they made soup for him for every meal, provided extra sauce and gravy with entrees, cut up or puréed anything we asked for. There was ice cream available 24 hours a day and even when he chose to eat something at the buffet, an attendant was there to help. He ate more on the cruise than he had in quite some time.

For relaxation, accessibility and a little bit of help for you as a caregiver, I say a cruise is a great option.

 

[Buckhorn]

Hi Matadog. I just signed up for a newsletter that is published by a man who has spent 23(?) years in a w/c. The newsletter is all about accessible travel. I know that it won't pertain to all people with ALS, especially in the later stages. However, I find it useful and he talks about how important planning ahead is, etc. google - sage traveling (.com) if you are interested.
One of the things that is nice about a cruise is the great sightseeing from the decks. Many cruiselines now are very accessible and having a balcony cabin would be wonderful for your wife if you can afford that. You are correct that eating is a major theme on a cruise. So, if your wife is having considerable problems eating, maybe that would be uncomfortable for her? I am not a cruise expert, but I think you could get food sent to the cabin and if you have a balcony cabin she could eat most meals on a private balcony! Most cruises have casual dining options (pizza, burgers, chicken nuggets) that you can take back to the room and you could help her prepare it so it is easily chewable for her. Find out how passionate she is about the cruise idea. Maybe it is something she REALLY wants to do with family while she still can. If this is the case, I am sure you will find the cruise line will be exceptionally helpful in providing meals to her in her cabin, etc. Hope this helps.

 

[lgelb]

A cruise sounds great if you find the right one but second the motion of getting help with the food, not just picking from the cas menu, as things like burgers can have gristle, nuggets likewise, breading can be an issue, etc. Smooth, consistent texture is often the best. There are still yummy things in that category like ice cream, smoothies,

There are agencies on line that specialize in booking for people in chairs and can also arrange equipment rental like a hospital bed if she needs that.

If her breathing is stable and she does not choke on food when eating easy stuff, this would be a great window for a cruise. How does she get around? Will you need to take the train somewhere or fly from Cincy to get to the cruise?

Welcome.

Best,
Laurie

 

[Texas Quilter]

I have taken 2 cruises since my diagnosis & had a wonderful time. You can rent a mobility scooter on board and there are some (not a lot) of shore excursions that are accessible. I have been in Norwegian and Royal Caribbean. You really need to book way in advance in order to get an accessible room with a roll in/walk in shower. The rooms are a little larger & easily accommodate a scooter or wheelchair. I have worked with a woman near Dallas who is an amputee & has traveled extensively so she really knows the ins/outs of disabled travel. She did a cruise about a year or so ago with an ALS group. On our last cruise, I couldn't get off the ship at a couple of stops, but didn't mind --- its nice to be on the ship with nearly everyone gone. At a tender port, my husband got off the ship at my insistence and had a great time. With my scooter, I was able to roam the ship & enjoy myself as well.
Dianne

 

[Matadog]

Thanks folks. There are also 3 teens I failed to mention in our family. If we do a cruise we will most likely drive to try and keep costs down. My wife really wants to go on a cruise or to a Punta Cana type trip. (which we did last year and was absolutely great). Now she is nearly 100% dependent on help with mobility. Her breathing and eating is hanging in there but I'm concerned on what might happen between now and when I can get something planned. I want to make her happy but I'm a nervous wreck about being out of the country.

 

[gooseberry]

What about an Alaskan cruise? Still in the states and you can see a lot from onboard. Trip insurance may be a viable option too.

 

[Trixie80]

Great ideas on vacations. I would love to go on a holidlay but am at the point where i need help off the toilet and i constantly worry about this. What do you all do for toileting assistance? Do you take or rent a lift? Or is there another trick?

 

[Buckhorn]

Matadog, what about a cruise that doesn't go too far out from the US boundaries? There are departures from TX, SC, even from PHL and Bayonne NJ. There are some really nice cruises that depart from the East Coast to Bermuda or the Bahamas. Bermuda has an excellent healthcare system (so I am told). We did a cruise to Bermuda, and it was wonderful. Bermuda is clean, safe, & friendly, but very $$! Most meals you will want to eat on board the ship if you choose to sail there. If you have teens with you, most cruises have lots of ship board activities (albeit expensive). If you want, send me a message and I can give you a link to a cruise consolidator that I have used (I can't PM yet), or google many options like "best cruises for teens", best cruises with Northeast US departures, etc. You will find a lot.

Trixie80, I think you would have to contact cruise companies (if you are interested in a cruise) that specialize in accessible travel. Also, google John Sage accessible travel. The author has been confined to a wheelchair for something like 23 years, and has lots of advice to share. You could also get a toilet lift, although you will have to ask around for one that would be portable. Do you have any much use of your arms? You can get an over the (existing) toilet chair with arms to help push yourself up. This in combo with the toilet lift will make things easier for you, although you would have to research and ask questions to find out what equipment would be portable.

 

[krnNdug]

We are going on a cruise this summer to Alaska. Got a wheelchair accessible room. They sent a long document asking about my needs and how they can help. Additionally, my wife is gluten and dairy free and they sent a list of items they can provide and asked about how they can help her. They are very accommodating. I have talked with a few people who said it was a great idea since you see a lot and sty in 1 room.

Doug