VACATIONING with ALS - HELP we have never done it before

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New member
Apr 2, 2008
Loved one DX
Every year my family for 22 years has gone to the beach for vacation. This year my husband (the one with ALS) at first would not let me plan or schedule anything. I finally have him over that and we are going through all the planning.

Here is what is in front of me - but I don't know what I don't know so any insites are welcome
1) we always go to Nags Head, N.C to beach so....
a) the houses are always 3 stories and stairs - well they arent our friend so I guess I now need to rent a house with an elevator
b) sand walking - ummm forget that . Jeff can still walk but with difficulty
c) fishing - he goes for the fishing I go for the beach swimming - how can he fish - left hand is useless - realing in ?

2) what are other good places to go understanding we want to be able to drive - so we are in central virginia and beaches are preference - we don't like hustle and bustle - lazy days in a hammock are the best - we have 3 kids - 21, 16 and 8

3) what should I NOT TAKE FOR GRANTED -

4) what resources are out there - like we usually only rent a 4 bedroom - but to get a house with elevator - those are usually the BIGGG ones - don't need and $3000 a week is cool - $7 to 10 thousand a week - is NOT cool ARE there websites or communities out there to help handicap rent spaces -


thanks all!

New Member - Debby (btw you can tell I am new becuase I first put this thread under the say hello forum - so you may see it in two places - uuugh)
Welcome to the forum Debbie. Don't worry about the duplicate post. We will take care of it. I'm glad you decided to join us and hope the vacation goes great!


My Mom was the one with ALS and we too vacationed every year at the Alabama beach where they had lived for years. I went to the website VRBO which is Vacation Rentals By Owner and found many great choices. What we found worked best for us was a beachfront condo. It had a fabulous balcony she could sit on and lots of windows to enjoy the beach. There are also special wheelchairs that can be rented that will go on the beach. They are not fancy and have big wheels. Beach equipment rental places have them. The nice thing about the condo was the pool, activity room and many amentities.
We did this 4 times in the 19 months she suffered with this disease. It is not easy and takes a lot of planning but the memories and joy are worth it all.
Cherish each opportunity to make a memory.


Hi there:

I can tell you that you should go on vacation for sure and go on as many as you can now. My friend Gail could walk great in the ocean because of the salt water and it did her the world of good. Take another couple with you to help you out so that you can enjoy the beach while the other husband can help with the fishing.

Have a great time and take lots of pictures.

Barbie xo

Have fun and remember to put a life vest on him near water. We live near the beach and our neurologist told us that right away. My husbands ALS affects arms shoulders and legs are still strong but balance off due to upper body so weak.


I am currently on a vacation with my father who has ALS. Not that you're not dealing with the horrible effects of the desease, but it sounds as though my fathers symtoms are a little bit farther along, but if thats the way it is... it's a wonderful thing. You would be surprised how much you can still do! I know I was! I really believe that one of the deciding factors of how to plan the trip is the attitude of the person with ALS. Although things will never be the same, there are often adjustments that can be made that can make the expperience just as enjoyable... even if it's different. I would think your husband would enjoy the fishing experience without ever touching a pole if he can be in the environment with good conversation, and maybe just being able to watch someone else enjoy it.

I hope that is helpful, and I understand that this may not be the case... I just think that any experience you can have right now has potential to be the best... even if it's different!

I am currently planning a 5 day trip with my husband (who has ALS) our 2 children and 3 grandkids. We live in NW Ohio and I finally thought of something we could do as a family. We are going to Niagra Falls, Ontario, Canada. I'm thinking that the 5 1/2 hour drive should be alright and I've booked a room that has a fallsview if Don isn't feeling up to going out with the kids, then he & I can just enjoy the view from our room :)

My mother is throwing a fit that we're going. She tells me that we have plenty of memories and feels that I'm being foolish taking Don on a road trip. At this point......I don't care what she thinks! This is about my husband and kids being able to spend some quality time together. Don is still mobile but I know the time is coming that he won't be. The walking would be too much for him at this point so I'm loading up the wheelchair too.

I bet your trip will be wonderful. I am glad you decided not to let your Mom's fears get to you. It is natural for us older folks to worry about our families, plus some of us are feeling a little vulnerable ourselves so the thought of someone who is seriously ill going off to see the sights sounds scary. You will come back with great photos and lots of memories! Enjoy!
Thanks Cindy.......I never thought of her fear of us going. I just didn't look at the whole picture, did I? :) Now it makes sense to me, thanks for your input. I thought that she was just worried about how I was going to pay for it. :)

Sis could be that, too. But you just go and enjoy your time with each other!
I'm in a power chair and we too went on a road trip a few weeks back. What should have been a 5 1/2 -6 hr drive to West Cleveland took almost 10 in the worst snow storm Ohio had in years. Do I regret it? Heck no. Almost 10 hrs in the van was a killer but the weekend we had was well worth it. The Holiday Inn West Lake had good size handicapped rooms with roll in shower, benches etc. We took our own commode chair. You'll love Niagara Falls. We're 2 hours away so have been many times. Lots to do and see for every budget and most of it accessible. Have a ball.

Thanks Al! I was hoping that the falls would be a good choice :)

I am checking with a travel agent now to see if we can take our 3rd grandchild with us. He is technically not ours by blood and has a different last name than the other 2 grandkids so I don't know how that would work taking him out of the country or getting him back in. It would be shame if he couldn't go with us. But I'm working on it :)

I'm glad to hear that you enjoyed your trip to Cleveland. Did you go to the Rock N' Roll Hall of Fame?

Hi Sisgldnhr -

About taking kids out of the country. We have always taken our neices and nephews out of the country - for years - last time was last summer.

They MUST have a passport - no matter what age. Then we get a notarized letter from the parents giving permission for the child to be taken out of the country. We also get permission (on the same letter) to get medical care for the child, if necessary.

No one at customs or the airport or anywhere else has ever asked for the letter - despite name differences. But we always have it - just in case.

Good luck on your travels! Beth
I love this thread! Reminds me of warm sunny days and long evenings someplace lovely. Let's hear some more vacation plans!
I have not vacationed with my husband recently, but his physical therapist mentioned that there are adaptive fishing poles. She said they have gotten them through the ALS loan pool before and my husband is on the waiting list for one. I hope that helps with the fishing part at least!
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