VACATIONING with ALS - HELP we have never done it before

[trying to stay positive]

Want to hear more vacation plans? You got it!

Hey Cindy, check out these vacations plans! First a big thank you to Irma for telling me about the Memories of Love Foundation. Thanks in part to her, my family is going to Disney World in June. The foundation supplies the hotel accommodations, tickets to Disney, Universal Studios, and Sea World, along with a small stipend for gas or meals. They do not, however, supply the transportation. But thanks to Jamie, who donated alot of his airmiles to my family, we will be flying from Chicago to Orlando first class! Nicole from my local ALSA has provided us with a wheelchair from their loan closet. We are SO excited about the trip! And we are so very blessed, as we could not have afforded this trip without the Memories of Love Foundation or without Jamie's incredibly generous donation.

We have had some family literally ignore us since my husband's DX, as well as a couple of "good friends" who are doing the same. Needless to say, this is painful, confusing and upsetting. And then there are these amazing people who give freely of themselves even though they have never even met us. When one door closes, another one opens. THANK YOU!:-D

Linda

 

[CindyM]

I just did a quick web search for adaptive fishing poles and found lots of other cool stuff. Like big tires for wheelchairs that go in the sand, links to places where they adapt adventure vacations, lots of interesting stuff. Sometimes I forget about all the resources that are available.

 

[sweetmozart]

This is a great thread.

My husband and I have always loved traveling. Now he is still walking, but not so well. My parents have scheduled us for an Alaskan cruise with them. I think we are, at least, going to have to take a manual wheelchair. It will be the first time he will have agreed to be in a wheelchair, and I'm a little nervous. He hasn't needed one until now.

I'm hoping to gain some wisdom.

 

[CindyM]

I was on a cruise once and there were a lot of folks in wheelchairs. I think it is a great idea!

 

[quadbliss]

I have done two Alaskan cruises in my power chair and had a great time. Cruises are a good vacation options for people in wheelchairs. :-D

Mike

 

[mztialady]

Cruises

Hi, I'm a newbie to the board. Vacationing can be fun, it just takes a lot of preparation and planning. We like to cruise. They generally have nice size accessible rooms with accessible bathrooms. My husband is unable to walk and little use of his arms and hands. It is very romantic to sit on deck and watch the water go buy, or to explore a tropical local together. I love all the memories we are making together.

 

[panamokapal]

please don't be afraid to go places or do anything. when i first was diagnosed my wife would make vacation plans and i would cancel them because i thought she was crazy making plans six months in advance. then she made disney plans last april and didn't tell me until 2 weeks before so i coudln't cancel, i suprised everyone, especially myself , by driving from long island to florida, walked the entire park and had a great time. i was short changing myself, worrying about what i couldn't do and not what i can do. its a year later and we are planning to go back. it takes more planning but it's well worth.

 

[sisgldnhr]

back from vacation

Well you were right Al......Niagara Falls was awesome! The power of all that water is amazing! Everything went off without a hitch. We took Don's breathing machinery and our hotel provided a wheelchair so we didn't have to load one into the van. Lol...with 8 of us in the van there was no room for a chair!
Don & I stayed at our hotel most of the time but we did get him to go on the Maid of the Mist boat ride. He loved it! I even got him into the jucuzzi in our room one day. I thought he would really enjoy that but he wasn't all that thrilled with all the bubbly water. I think that it may have scared him. ? Our kids and grandkids did all the tourist stuff and they had a great time too. They thanked us all the way home

Lol.... we just got home last night and I am thinking of another trip to take Maybe just the two of us driving to the Grand Canyon.

So for anyone thinking of vacationing........GO!

Sis

 

[CindyM]

I am so happy you guys got to build some happy memories, Sis.

 

[Al]

Glad it went well sis. Grand Canyon is even better.
AL

 

[snowmass27]

Building up to a cruise

We are trying out some mini vacations. The first will be a road trip to Las Vegas to see a Cirque du Soleil show (with a handicap accessible room and wheelchair seating).

If that works, we have a trip planned to Boston. Bathroom issues on the plane concern me but I think we can work around that - I've gotten some helpful hints from some of the other postings. We are debating whether I can do it with a transport wheelchair or if my husband should take his power chair. We are concerned about the logistics of having the airlines take apart the chair at the gate check. Also, if we take the power chair, we have to rent the wheelchair van. I keep thinking that we are better off with the power chair, even though it is inconvenient to check, but he will have more mobility.

I am now looking into a cruise that we would only have to fly in 1 direction. However, the cruise is next December. My husband's symptoms started last October and he was diagnosed in March. Now he can barely walk with a walker to use the bathroom and otherwise is in a chair. He only has 1 usable arm and his speech is affected. What do you think are the chances that he can manage a long flight and a cruise 6 months from now? I've asked if there is possibility of respite care on board but don't have an answer yet.

I welcome any suggestions. Thanks.

 

[sisgldnhr]

vacations

Well Don has decided that he is done with vacations. He feels that he is just too weak to go anywhere. Whatever he decides works for me. He has always wanted to see the Grand Canyon but feels that its not worth the added stress on his body.
I feel lucky that we were able to make the Niagara trip.

Sis

 

[bhyatt]

Vacation

Debbie,

I lost my wife recently to ALS. We traveled a lot the last three years. Here are a few tips based upon our experience.

1. Make reservations by direct contact with the hotel and explain the situation. You will reduce the chance of surprise.
2. Hotels are more accommodating than rentals. New ones are usually the best equipped.
3. When it becomes necessary to accompany you husband into a rest room look for "Family" facilities. Many newer public buildings have them. On the road, we found hotels willing to help, newer rest stops were good, but the best were truck stops with shower facilities. They usually have one for handicap drivers they will let you use.
4. A Florida company makes a beach wheelchair. Check them out at www.beachwheelchair.com. We used one and found it to be amazingly easy. They are available for loan at several locations, many free of charge.
5. We enjoyed the beach on Assateague Is. (Chincoteague, VA) a lot. Quiet with a wildlife refuge adjacent. They have a couple to the beach wheelchairs to use for short periods, but we borrowed one from Ocean City, MD for three days.

There are other "trick" we picked up and were please with the way people went out the their way to help. I hope your travel time is as enjoyable as ours was.
Bill

 

[sweetmozart]

Great thread!

Good luck to all on your vacations! They sound great. One of the best things about a vacation is just having something fun to look forward to.

We have two planned this summer. One to North Carolina with husband's family (he is the PALS). We'll probably do the condo thing. ( Didn't realize they rent those wheelchairs with the big wheels with the rest of the beach rentals. Good to know.)

In August we're going, with my family, on an Alaskan cruise. DH is still walking, but not for long distances. I'm thinkiing of taking a folding wheelchar along on the cruise, and thinking that it may be the first time he uses one.

I would love any advice or traveling tips!

 

[quadbliss]

Hi sweetmozart,

There may be some helpful info on my website. :-D

Mike