Traveling with ALS

[Larrytbm]

My wife was recently diagnosed with ALS and we still want to travel while we can. For many years we have done volunteer work with several groups that live in our RVs wherever the job is. We have done probably 80 jobs and we would still like to be with those friends.

Our current trailer is totally unsuited for a handicapped person. However there is another type, a 'toy hauler' that would be fantastic. It has a 12 ft 'garage' at the back with a ramp, a bathroom next to the garage that I can enlarge (taking up some of the garage area) for a roll in shower, etc. Also it has electric lift that could be modified to use a sling for transfer from bed to wheelchair. If necessary, a wheelchair hoist could be added ($10k) and finally there is certainly room for other medical equipment in the garage that I don't even know about.

Our son works for a mobility company so getting my truck modified to lift my wife into it will not be a problem. Cost to switch trailers is about $20k right now plus whatever it cost for modifications down the road. Our son has a handicapped daughter and three other children and this toy hauler could be used by them in the future when we can no longer use it.

Are we crazy to do this? Will traveling be harmful for her? I'm concerned that access to emergency health care is an issue, but hopefully with time we will understand better when to stop traveling. Please share your thoughts and experience since this is a totally new path to us.

 

[KimT]

Many PALS travel. I don't because I'm in a lot of pain. As long as your finances can support it, I would encourage you to keep traveling and enjoying life.

I think as long as your wife wants to travel, it will enhance her life. Some of our PALS are on the road for long periods of time.

 

[Nikki J]

Yes defintely go for it. You might want to read threads by Nuts ( a CALS) and swalker ( a PALS) who have shared adventures here. Others have as well They will probably chime in too. My sister traveled extensively and had plans to do more when she died. You will never regret the memories you make

 

[lgelb]

Larry,

You are not crazy and traveling will not hurt her. From what you say of your life to date, it will only help. Emergency health care is not usually an issue in ALS, if you are proactive about getting equipment as she needs it to support breathing/nutrition and prevent falls. Happy trails!

Best,
Laurie

 

[affected]

Welcome and I say look into your options and try to do all you can that makes both your lives happy as long as you can! These modifications sound awesome

 

[gooseberry]

I would say go for it but remember your pals stamina and recovery time will be very different. We would drive 12 or 13 hours before my husband got diagnosed. After he could only ride for about 6 hours then he was exhausted. He would sleep a lot on our trips. In bed early and slept in. Plus you will be responsible for all the packing and unpacking, driving, etc. Be kind and take care of yourself when you travel.

 

[4tloml]

We took a 5,000 mile road trip in 2015 and never regretted a moment!

I hope you'll go for it!!!

Now that my PALS doesn't even want to go out of the house, we have some priceless memories of that trip and an Alaskan cruise that sustain us and bring us cheer. In fact we have pictures taken on those trips all over our home. It's important to find joy in the midst of ALS. We must feed our spirits and minds, particularly as the body struggles. Sounds like you've already picked out the perfect rig to do that--Enjoy!

 

[swalker]

I am new to the trailer life. When I could no longer get into and out of a tent we decided to get a small, bumper-pull trailer. We have had it for 18 months and have put almost 10,000 miles on it. It is a 2008 Nash 22GQ.

We camped for 13 weeks last year, have already put in 5 weeks this year, and look forward to many more weeks this year.

We have talked to many people, including a wonderful woman whose husband died of MS, about all types of RVs to use as I progress.

Here is some information that may be helpful.

First, I encourage you to travel now if that is your desire and your PALS is able to do so. I keep telling myself that I will never by physically better than I am today. If it is hard to do today, I want to do it. The day will surely come when I can no longer camp. I will accept it when it arrives, but until then I plan to camp all I can.

We have a bumper-pull trailer with 3 total steps to get into the trailer. It has nice hand rails inside and out that help me. I can still do those 3 steps, so our trailer works for us. The trailer has a walk-around queen bed so that I can easily get into it. It has a large bath in back which is good for me. There is a shower and tub, but no practical way to modify it to a roll in setup.

While the trailer currently works for us, I know it is a temporary solution. I have spent much time thinking about what is next. Based on the information I have gathered, I have decided it will not be a toy hauler. The reasons are:

1. The ramps on all the toy haulers I have looked at are too steep for my wheelchairs to negotiate. Even my four wheel drive wheelchair would have trouble. We would have to install a winch system to make it practical.
2. The door from the garage to the living compartment is too narrow for any of my wheelchairs.
3. The interior is not configured to allow me to use a wheelchair in it. I would be relegated to a sling and a ceiling track.
4. Most RVs do not have a strong enough roof structure to support installation of a ceiling track.
5. I have not found any toy haulers with a power ramp. I would be trapped inside until my wife opens the ramp.
6. Toy hauler ramps are heavy and my wife would have difficulty opening and closing them.
7. When the ramp is open all the outside weather makes its way into the garage.
8. There must be sufficient space behind the toy hauler to allow the ramp to open and the wheelchair to exit. This is not likely to be the case in the places we camp.
9. Toy haulers are heavy and require a larger tow vehicle than we have.

Keep in mind that when travelling you will need a vehicle to tow the trailer and haul the wheelchair(s). We have not found a single vehicle that will do this. The closest we can find is a Chevy silverado 3500 with an ATC conversion. That conversion will not fit any of my current wheelchairs. A new truck with that conversion would run about $100,000.

Our current solution is to take 2 vehicles. We tow the trailer with an SUV (I can still drive). My wife follows in the wheelchair van which has 2 wheelchairs in it.

When I can no longer drive and/or transfer, our plan is to buy a class A motorhome with a wheelchair lift and ceiling track. We have seen advertisements for several that have layouts I could practically use with my wheelchair. We would tow the wheelchair van behind the motorhome.

We like to camp in national parks where the campsites do not have power.
Charging the wheelchairs is an issue. We have found some places where we can park the wheelchair van next to a power outlet and charge the wheelchairs inside the van. At another campground they let us park the wheelchair in the office of the laundry mat, where there is a power outlet. If you do this, be sure to bring a good surge suppressor. We burned up a wheelchair charger (about $350) by not using a surge suppressor at a campsite.

Feel free to ask questions about camping. It has presented a whole set of challenges but we have figured out ways to overcome each so far. I would be glad to share any information I have.

Steve

 

[Larrytbm]

While the trailer currently works for us, I know it is a temporary solution. I have spent much time thinking about what is next. Based on the information I have gathered, I have decided it will not be a toy hauler. The reasons are:

1. The ramps on all the toy haulers I have looked at are too steep for my wheelchairs to negotiate. Even my four wheel drive wheelchair would have trouble. We would have to install a winch system to make it practical.
2. The door from the garage to the living compartment is too narrow for any of my wheelchairs.
3. The interior is not configured to allow me to use a wheelchair in it. I would be relegated to a sling and a ceiling track.
4. Most RVs do not have a strong enough roof structure to support installation of a ceiling track.
5. I have not found any toy haulers with a power ramp. I would be trapped inside until my wife opens the ramp.
6. Toy hauler ramps are heavy and my wife would have difficulty opening and closing them.
7. When the ramp is open all the outside weather makes its way into the garage.
8. There must be sufficient space behind the toy hauler to allow the ramp to open and the wheelchair to exit. This is not likely to be the case in the places we camp.
9. Toy haulers are heavy and require a larger tow vehicle than we have.

Keep in mind that when travelling you will need a vehicle to tow the trailer and haul the wheelchair(s). We have not found a single vehicle that will do this. The closest we can find is a Chevy silverado 3500 with an ATC conversion. That conversion will not fit any of my current wheelchairs. A new truck with that conversion would run about $100,000.

When I can no longer drive and/or transfer, our plan is to buy a class A motorhome with a wheelchair lift and ceiling track. We have seen advertisements for several that have layouts I could practically use with my wheelchair. We would tow the wheelchair van behind the motorhome.

Steve, I understand that coming from tenting, that going large, especially a toy hauler, is a huge step. My situation is quite different having pulled fivers for almost 30 yrs. The new TH is 4 ft longer than our previous unit and just a few hundred lbs heavier. I already have the necessary tow vehicle and since the 12 ft garage can easily handle a PWC, we will still travel with a single vehicle. I agree, using the ramp will require a 50 ft, reasonable level site and that is probably my biggest concern. Opening and closing the ramp doesn't concern me, the tool trailers we use on our volunteer projects have ramps that I use all the time. And while the ramp may be too steep for a PWC, a $50 winch from Harbor Freight hooked to one of the tie downs in the floor will get the job done. With the bathroom next to the garage, plumbing is readily available for a roll in shower and there is sufficient space. Just removing the door and frame between the garage and living area will provide wheelchair access between the two areas and the floor joists/decking is the same throughout so totally capable of handling the weight of a PWC.

I agree roof strength for a ceiling track is an issue, but again the electric bed lift already has tracks attached to the sidewalls and a simple track attached under the bed frame can handle a sling for transfers.

What I didn't like about my previous trailer and many rigs is a single entry door. Put a lift on that door and everyone must use the lift for even quick access. I've only spent $20k for this new TH and it has 3 doors, ez to widen the second door or even cut an opening thru the ramp for a lift, in fact cutting a hole thru the ramp is probably the cheapest route. I also considered motorhomes, but if there isn't a solution for a handicapped bathroom, then I don't see how it would work.

 

[swalker]

I am really interested in knowing more about what you do to your toy hauler. Anything that keeps me camping is on the radar for us.

If you get a chance to post pictures of some of the modifications I would really appreciate it. And, of course, I would love to see pictures of you guys camping.

I noticed from your profile that you are in Austin. That is where my wife and I met and got married a long time ago. I have a sister in Dripping Springs and one in San Antonio. I sure love the hill country.

Steve

 

[Larrytbm]

I am really interested in knowing more about what you do to your toy hauler. Anything that keeps me camping is on the radar for us.

If you get a chance to post pictures of some of the modifications I would really appreciate it. And, of course, I would love to see pictures of you guys camping.

I noticed from your profile that you are in Austin. That is where my wife and I met and got married a long time ago. I have a sister in Dripping Springs and one in San Antonio. I sure love the hill country.

Steve

Steve,

Actually, I hope it will be a long time before I have to make mods to the TH. But when the time comes, they will be fairly straightforward. We got an EZ Lite folding PWC to begin with, so I can get it into the TH pretty easy. I suspect the mod that will be required first is a valet lift for the truck. My son says it can be done in 1-2 weeks.

Our first camping trip is planned for early Aug. (Cloudcroft, NM to escape the heat). My priority right now is the roll in shower for the house, got to get it done by next month. With just a single bath, we have to use the RV for showers right now.

We live near Lake Travis and closer to Dripping Springs than Austin.

 

[swalker]

I sure hope it is a long time before you need to modify the toy hauler.

Lake Travis is a special place. We used to go boating there in the early 60s. It is sure a different place now.

When we first moved to Austin I think the population was less than 100,000. It was very much a small town back then. It sure has grown over the years. We still love visiting there.

Enjoy your trip to New Mexico. My wife and I love to visit there, especially Santa Fe.

Steve