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HeatherFeather

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Joined
Nov 30, 2014
Messages
284
Reason
CALS
Diagnosis
10/2014
Country
CA
State
Quebec
City
Tiny town w/no stoplight!
I'm sure this will be Ron's last vacation since he's progressing so very very fast :cry:

We had booked a cruise for next December but we will cancel that one. We decided on booking one sooner (think we booked in November after Ron's diagnosis). We will be leaving mid-April, travelling by plane to New Orleans and staying there for a few days. Then on the cruise to the Carribean for 11 days. We are going with another couple who has back problems.

Now for the questions:

1) Plane. Ron has booked an aisle seat for himself. The stewardesses cannot help Ron into his seat. The friends we are travelling with have a hard time moving Ron and so do I. He has fallen in the house many many times even with the two of us helping him.

2) The hotel. No lift. At home, Ron needs a mini-lift to get him in and out of bed to his wheelchair, the commode, etc. This is not a hoyer lift but a sit to stand lift so it does not have the sling that fits under his butt - it's just a belt around his waist and straps under each armpit. Again, the problems of me and our friend trying to help Ron in and out of bed, to the shower, to the bathroom (it is a wheelchair accessible room though)

3) The cruise. We tried to rent a lift, but it doesn't come with the harness so we'll probably have to buy one but don't know what type

Ron has very little to no use of his legs. His left arm is nearly useless and his right arm is getting worse. His voice has changed and his breathing has dropped from 98% to 87% which is not too bad so he's not ready for a BiPap yet.

Would love some suggestions on this ! Thanks so much all and have a beautiful day xoxo
 
Also, the friends who are coming with us (they both have back problems and he is not a very strong man to begin with), have started expressing concerns about safety when lifting Ron. Then we have others who have mentioned to Ron (which wasn't very kind) that perhaps he should cancel the cruise because he will take the fun out of the cruise for everyone else going with us!
 
Is it too late to hire someone to go with you? Honestly he is probably going to be weaker still and it sounds like there are going to be a lot of unassisted transfers for sure. And it does not seem like any of the 3 of you are physically able to do them?
Can you hire a lift to use at the hotel. Something to find out about both the cruiseship and the hotel is how big is the room, how much clearance is there under the bed and the size of the bathroom to be sure you can use it as planned. Ask them to send the name and model number of what you are renting. You are going to have to learn new equipment on the fly
 
What about checking the local loan closets at a nearby ALS or MDA ALS chapter for a lift? I know ours have a few here in AZ, but I didn't even know they made a mini lift.

I want to go on a cruise and think it would be good for me with my physical limits. What are your thoughts? We are planning a Yosemite vacation for the whole family which is some place all will remember, but I was thinking a cruise just for my CALS and me.

Thanks for your input as well.
Doug
 
The airlines/airport should have a transfer chair to help him to/from his seat. This is like a mini wheelchair that is the width of the aisle of the plane. Either airline staff or airport staff will help him with this. Call the airline in advance to make sure they are aware that your husband will need extra assistance and they will put it on his file. And then when you check-in remind them again. And when you get to the gate, remind them again. Because your husband has a disability you should be able to go through the express line at the security check.

As for the hotel and cruise, perhaps see if there is a concierge or someone that can arrange for a lift and/or see if you could hire a caregiver/support worker for help with transfers.

Last year I went to Las Vegas and booked a wheelchair accessible room (Aria hotel). In advance I asked the concierge desk if they had a commode chair. They said yes, but when I got there there was none available. I got quite upset and implored them to get one for my use during my stay. They eventually complied, but with much runaround. You would think that a relatively new and relatively high end hotel would have more experience with guests with disabilities, but sometimes you just have to be demanding. Not rude, but let them know that your husband is a human being with a terribly debilitating disease, and that a lift and a trained support person would make a world of difference. Same with the cruise line. Tell them what you need and then ask them what they could do to help you.
 
First off, everyone needs to realize and admit that this is to going to be the regular fun and relaxing vacation you are use to. It will be a lot of extra work but will be a special memory for all of you. so once everyone has their head wrapped around that, you can start to really think about how to make it easier on all of you. You and your friends cannot risk your own health trying to do dangerous transfers. is there anyway to fly in on the day of departure and go directly to the cruise ship--just bypass the hotel day which sounds extra exhausting for all of you. I like the idea if you have the funds of hiring an aide to take with you on the cruise. maybe a strong young man or woman that your family knows. they do all the lifting and transferring needed. see if any of your friends have a college age son or daughter or grandkid that would like to take a free cruise for a little work!
 
From what I have heard, there are firms that rent Hoyer lifts and hospital beds for cabins on cruise ships. They deliver directly to the ship. I guess that's what you checked into? It is true that you will need to bring your own sling (what you called a "harness"). You can buy these on line -- as you have probably read, the most flexible is the divided leg sling. We always used mesh but there are also solid versions.

But for the hotel, there are more variables. There are also foldable Hoyer-type lifts that you could buy and take with you, and have for your home until then. The standing lift that you are using is going to have a limited lifespan as you know, and you're going to need a toileting solution for the hotel and ship. Likely, even the "wheelchair accessible" bathroom will be a challenge. I agree w/ Barbie that just the cruise is going to be a massive undertaking and would be really sure of the hotel room specs (some people travel w/ their own blocks for elevating the bed to use w/ a lift) and your cadre of help before considering that part of it.

Certainly you don't have to buy a lift this second if you are paying cash, but the aide idea seems like a necessity from what you describe so I would snag another ticket for your cabin and start looking for candidates. You have to presume that things will progress from now till April and there are going to be a lot of transfers.
 
Thanks everyone for your suggestions! Ron called the cruise ship and asked for a commode. Then he asked if there was help available to help lift him in and out of bed, onto his wheelchair and commode but they said that no one could help with this. But Ron managed to call a rental place that will rent a hoyer lift to us, deliver it to the hotel for the two nights, then deliver it to the cruise ship for the remainder of the time. All we had to do was supply our own sling which we didn't have but they will sell us one for $100. As for the plane rides, Ron will be calling them this week.

I'll be giving Ron sponge baths in bed and washing his hair while he's in his wheelchair as the shower will probably be too hard to get to even though we did get a wheelchair accessible cabin.

Now all I have to do is find out how to operate a hoyer lift ;-)
 
Heather, you are amazing! You sound SO much better than when you first posted here, and I SO admire your pursuit of this cruise. If preparation and insure that, you should be good! I was rereading about the comments to Ron that maybe his prescence would take the fun out of the trip for others. Yes, if everyone is expected to move at his speed, it will--so just be sure to cover the part where they go and do while he rests when needed. Is he prepared to insist that they participate in activities that interest them even if he can't join them? I've only taken one cruise, and it was wonderful. We had 10 family members covering three generations and met every evening for dinner together. Other than that, everyone was on their own unless they wanted to meet up (and we ran into each other often enough as it was).
 
Heather, you are amazing! You sound SO much better than when you first posted here, I do? :D and I SO admire your pursuit of this cruise. If preparation and insure that, you should be good! I was rereading about the comments to Ron that maybe his prescence would take the fun out of the trip for others. Yes, if everyone is expected to move at his speed, it will--so just be sure to cover the part where they go and do while he rests when needed. Is he prepared to insist that they participate in activities that interest them even if he can't join them? Yes, Ron definitely wants us to continue doing what we want on the cruise even though he can't join in this time. His friends are saying, "no no, we won't do it if you won't", but Ron's insisting and I will convince them. I've only taken one cruise, and it was wonderful. We had 10 family members covering three generations and met every evening for dinner together. Other than that, everyone was on their own unless they wanted to meet up (and we ran into each other often enough as it was).
We went on a cruise last April, just before Ron started having symptoms - it was our 4th cruise with Norwegian and we just loved it. We will make our own fun and make sure Ron will really enjoy it! He deserved the BEST xoxoxo
 
>We will make our own fun and make sure Ron will really enjoy it!

:)
 
Heather,

I am very happy you guys figured so much of that out and so quickly. It can be intimidating to confront the ugly beast, but when you get into the details of planning it has helped us.

Love Life, Live Life.
Doug
 
Good on you Heather, Bj and I will be cruising in March for 17 days, we were not able to get a wheel chair friendly room, but Bj has not progressed as quickly as Ron, we have managed to get a toilet riser chair and I need to check on the bed rail, we too will be making some very special memories on our cruise. I am sure there will be some challenges but we will face them as they arise. It's good to know that hoyer lifts can be rented.
All the best with the rest of your planning.
Love and hugs Gem
 
Good on you Heather, Bj and I will be cruising in March for 17 days, we were not able to get a wheel chair friendly room, but Bj has not progressed as quickly as Ron, we have managed to get a toilet riser chair and I need to check on the bed rail, we too will be making some very special memories on our cruise. I am sure there will be some challenges but we will face them as they arise. It's good to know that hoyer lifts can be rented.
All the best with the rest of your planning.
Love and hugs Gem

Oops - the bedrail! Have to call Norwegian again! Thanks Gem for reminding me ;-) xoxoxo
 
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