VACATIONING with ALS - HELP we have never done it before

[debby]

Hello!
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 -

NEED YOUR IDEAS -

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)

[CindyM]

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!

[The Sass]

Debby,

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.

Hugs,
Sass

[Barbie4]

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

[hopingforthebest]

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.

Patty

[Xtina1217]

Debby,

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!

[sisgldnhr]

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.

Sis

[CindyM]

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!!

[sisgldnhr]

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

[CindyM]

Well...it could be that, too. But you just go and enjoy your time with each other!

[Al]

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.
AL

[sisgldnhr]

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??

Sis

[nspoc]

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

[CindyM]

I love this thread! Reminds me of warm sunny days and long evenings someplace lovely. Let's hear some more vacation plans!!!

[stephie]

Hello!
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!
-Stephie

[trying to stay positive]

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]

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]

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]

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]

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]

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.

Make reservations by direct contact with the hotel and explain the situation. You will reduce the chance of surprise.
Hotels are more accommodating than rentals. New ones are usually the best equipped.
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.
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.
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]

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 (http://quadbliss.com/travel.htm). :-D

Mike

[sweetmozart]

I'll check it out.

Thanks, Mike.

[cmacf1]

Reply by bhyatt:

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.

Hi -- We are going to Chincoteague in August for vacation and I'd love to know where in Chincoteague we can find these beach wheelchairs for my mom. I'd LOVE to get her out on the beach with her grandkids!!! Thanks or any information:mrgreen:!

[anneinma]

My dear husband and I went to Mexico for the week prior to his passing. That week will be forever in my memory. I made things easy for my Dh by bringing a wheelchair and agreeing ahead of time that we would use it. He would not have had the energy to make the trip otherwise. He rested a lot so he could make it to dinner. He tried going into the water which he loved but was very nervous of falling. I brought a chair down to the water so he could sit there.

My suggestion is to make it as easy as possible for your loved one and appreciate the fact that you have that time to share.