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Jennanne

Active member
Joined
Oct 25, 2016
Messages
39
Reason
CALS
Diagnosis
12/2016
Country
US
State
New York
City
Buffalo
Hi All,

Looking for some advice.. We have a boat and camper which we would love to use this summer. This is our first "ALS summer" so I am anticipating some adaptations. My PALS loves to fish and my step - son and I want to get him out on the boat.

He is using a walker now, and can walk short distances without one. He cannot climb stairs anymore, his ankles and balance are affected the most. His hands are weak too, but he has pretty good arm strength. Ironically he still has most of his muscle mass, with terribly weak ankles (this disease absolutely sucks) so lifting him can be done, but would be very difficult.

I believe that getting him into the boat shouldn't be too much of an issue. Any advice on lifting him out? It is a 22 foot open bow run about. Also, any advice on stair adaptations for a camper? It's a tow behind travel trailer with bed bump outs and a slide out. Thank you so much!

Jenn
 
Bumping this hoping someone replies, I'm very interested in a response to this as well; my father in law was very active in my brother in law's boy scout troop and loved camping/the outdoors in general. He's in a very similar state as what is described above.
 
I'd love to hear suggestions as well.

I certainly am ready for a campfire night. Hoping to wrangle an invite to our "all sections" scout camp for the beginning of June. I do miss leading my Cub Pack.

Angie
 
My input may not be very valuable, because I still have the ability to go up the stairs into our trailer.

Here are some thoughts.

1. I love camping and moved from a tent to a trailer. It is no longer practical for me to get in and out of a tent. We purchased a 22 foot travel trailer with a walk around queen bed. I can walk up the 3 steps into the trailer. There is a grab handle on the side of the trailer that helps.
2. I have seen various lifts that are based on a pole mounted to the trailer door. They would not lift a power wheelchair, but will lift a person in a manual wheelchair or in a seat. I don't plan to go that route. When the time comes, I will get a fully accessible RV.
3. We considered a toy hauler with a rear ramp. Most ramp angles are too steep for a power wheelchair. You have to open the ramp from the outside and there appear to be none with a power ramp. I don't want my wife to have to deal with the ramp, which is awkward and heavy. When the ramp is open, wind, rain, snow, etc. can blow into the trailer.
4. Few wheelchair hauling vehicles are capable of towing even a small trailer. We drive two vehicles. I tow the trailer with an SUV and my wife drives the wheelchair van. This is only practical as long as I can drive. When I can no longer drive, we will either get a wheelchair-accessible pickup (1 ton), a 1 ton van, or move directly to a fully accessible RV that will tow the wheelchair van.
5. Since you already have a trailer, I assume you know the ins and outs of hitching, unhitching, setting up camp, etc. For those who have never done it, don't underestimate the amount of effort involved. It is all pretty straightforward, but some of it requires strength.

We spent over 12 weeks camping with our trailer last year. We just wrapped up a 1-week trip to the Grand Canyon. We have an additional 10 weeks of trips planned for this year. I do love to camp and want to continue to do so while I still can.

Two years ago we tent-camped and camping was hard. As I have deteriorated, camping has become much harder and using a trailer is essential. I use every device and tool possible to be able to do as much as I can. Still, I can tell the days of camping this way will come to an end some day. My intent is to do as much camping as possible between now and then.

Good luck and feel free to ask questions!

Steve
 
Thank you so much for your thoughtful response Steve! We were thinking some type of pole for the camper. He is ok with a few stains as long as he has something strong to grab onto.

Yes, we are familiar with towing, hitches, etc. Luckily our camper is fairly new so once it's in place maintenance is easy. I'm ok with towing it, but backing up is a whole other story LOL! We'll have family to help!

Jenn
 
Here is a link to the kind of lift I was referring to: www dot youtube dot com/watch?v=HfVImPpOtYw

Towing a trailer is a new experience for me. We purchased our used travel trailer 18 months ago in Los Angeles. We got to the dealer early so that we could leave well before rush hour traffic started. Of course, things were delayed and we pulled onto the freeway at 5:00 PM.

I had never towed anything before, so it was quite the exciting experience.

We have now towed the trailer over 8,000 miles. I still get nervous every time I have to back it up!

I vastly prefered camping without a trailer. Life was so much simpler when I simply slept in the back of the car. I really enjoyed sleeping in a tent and hearing the sounds of nature.

Over the years we migrated from a minimalist backpacking tent (so easy to set up!) to a larger tent to an even larger tent. And, now to the trailer.

I really miss the days of backpacking, where I often did not set up a tent. Heck, I did not even own a backpacking tent until after I was married. I just used a tarp. My pack was lighter back then. Now it takes two cars for my wife and me to go camping. But, it is the only way we can do it and I really do love to camp!

Steve
 
A hand rail is necessary, and ask if he prefers short stairs or a ramp?

I find ramps are easier than stairs. I can shuffle switchbacks on a ramp to equate short steps on bad days, and walk straight up or down a ramp on good days, as long as I have a more horizontal handrail. Arm presses off a rail below the elbow, are much easier than pull ups from a rail above the shoulder. Two handrails are better than one.

Vertical handrails, for me, are an accident waiting to happen. Tall steps, like most trailers and motor homes are impossible standing, but can be negotiated crawling. Train car steps are a, "grab the vertical hand rail and swing in to sit on the second step" exercise, before pressing/crawling up to the main car level where the horizontal hand rails are located to assist standing up.

Boat boarding from a dock is OK for me if I can sit on the boat rail from the dock, and then swing my legs over the rail to enter and stand on the deck or cockpit. Boarding a transfer shuttle or dock with stairs or a big elevation change is near impossible. Going down into a boat deck is easier, but usually that means you have to come back up to exit the boat. Near horizontal rails where you can support body weight without hand gripping muscles, to lever up to the next step or elevation change, is very helpful.

A few strong arms on all sides will help too (and a must when testing unfamiliar access).

Ask where the difficulty occur, and what is preferred. What works better for him will work better for you.
 
Wow, that is fantastic information! I'm going to have my PALS read through this tonight. We have 2 stairs going into the camper and when we bought it (long before ALS) my PALS made a platform because the first step was so high up to make it more like "real stairs".

It currently has a slanted rail, I'm just worried he'll pull it right out when he steps in. He sounds very similar to you with the horizontal rails being the best. He still has a tremendous amount of upper body strength, his grip is just weak.

I'm more worried that he is, he tells me not to worry that he will just crawl in the camper if need be, I would just like to make it easier!

Thanks again!
Jenn
 
Jenn, I noticed some lifts for campers on the internet but they were pricey. They looked like they would work perfectly though. I hope you find something. Camping sounds wonderful.
 
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