My Story

[ph115]

I was diagnosed on June 2, 2020 with ALS after being misdiagnosed for one and 1/2 years. Two orthopedic doctors, one physician’s assistant and two orthopedic surgeons all said I had spinal issues causing weakness in my hands and pain when walking. I actually had cervical spine surgery February 2020 for hand weakness. It was successful for two weeks and then started with the weakness again. That’s when Covid arrived and I was unable to get back to my doctor and had to do teleconferencing. Finally when Emory opened up I was able to have two MRIs which showed my spine was fine and was advised to see a neurologist. I was fortunate to get an appointment with Dr. Jonathan Glass who is the doctor in charge of the ALS Clinic in Atlanta in just a few weeks and was diagnosed that day with ALS.

Our daughter passed away in 2016 after fighting ALS for eight years. She was only 47 when she passed away but I’m now 81 and never thought I would get this horrible disease.

Our son and daughter-in-law sold their house and moved in with us to care for us. Our son got laid off last October due to Covid cut back and is now here all day with us. We want to go for one last vacation from Atlanta where we live to southern New Hampshire where we have relatives. (Hubby is disabled due to mini strokes during bypass surgery.)

I have hand and arm weakness and can no longer type on my laptop. I can eat holding my fork but it’s getting difficult and sometimes I end up having to be fed. I can no longer stand on my own or walk but I am able to have my son lift me from my recliner and I hold on to a rail while he moves the walker or rolling potty/shower chair in back of m.

We have a Honda Odyssey minivan but not a handicap van. Our son hates driving these handicap vans because he says it’s like driving a Mack truck. He’s trying to figure out a way to get me in and out of the van so that I can sit in one of the backseats. I have an electric wheelchair but it weighs 500 pounds and there’s no way to get me into the van while sitting in the wheelchair. I’m sure he can figure out how to get me in and out of the van but the one problem I’m having is a hotel to stay in at night and probably two nights. I sleep in a lift recliner at home But don’t know of any hotels that have recliners. I would appreciate it if anybody knows of a chain that carries these.

 

[lgelb]

Welcome, PH, while sorry that you are here, and my sympathies on the loss of your daughter and your husband's disability.

From what I know, recliners are more often available in extended stay chains/motels, like Extended Stay America, Candlewood Suites, and the like. But these are not necessarily accessible for you. I would call the individual facility and ask for recommendations if they are not a fit.

There are also "wheelchair travel" sites with listings, TripAdvisor, and other resources.

Re the van, the Odyssey is not a long-term solution as you mentioned. Beyond safe transfers, you either do not or will not have the core strength to sit safely/comfortably outside the power chair. If you are going to travel, you will really want to use a wheelchair van. You can rent them by the day or week so your son would be driving one for a minimum period. They will drop them off for a fee. You might also explore taking a train or bus to your everyday destinations. Paratransit is often available if you are not near a stop.

Have you looked into using dictation or an alternative mouse/trackpad/virtual keyboard on your laptop?

Let us know how we can help.

Best,
Laurie

 

[ph115]

Thank you for your reply. We may have to take my lazy boy recliner. It can be taken apart into two pieces and easy to lift. I could also use it where were staying in New Hampshire instead of having to rent one.

We have rented a handicap van about five times when I had to go to the doctors or to get our Covid shots. I agree it would be much easier but my son is stubborn and would prefer to drive the Odyssey. At this point I’m still able to sit up straight but I know it won’t be forever. We don’t know where we’ll stop at night so reservations will be hard to make.

Train or bus aren’t available where we live in an Atlanta suburb. Renting a handicap van is the best option.

Our daughter had a Tobi Dynavox but we donated it back to ALS after she passed away. I’m going to see if Medicare and AARP will pay for it. My voice has changed a bit so I know what’s down the road.

 

[jonico]

Hi PH,

I hope you get to NH. I believe you can do it. You speak of taking the Odyssey and breaking down the recliner and taking that along. Assuming that works for you, you won't have your electric wheelchair. I gather you are okay with that and perhaps can use a manual wheelchair. If that is the case, it sounds like you could make it to NH with stops at hotels along the way that would allow you to bring your recliner in and set it up. Laurie gave good advice on chains that may even have a recliner for you.

Otherwise, you may want to reach out to Team Gleason. They help PALS and CALS go on adventures. Not sure where they stand with assistance like that at this time, but worth a try. There is also an organization south of Boston called CCALS, one of the many services they provide PALS/CALS is the opportunity for PALS and family members to stay in a fully accessible suite for a kind of retreat like you are looking forward to. Falmouth MA is about 2 to 3 hours from southern NH, so depending on how you feel about it, you might be able to day trip it up to see folks in NH. CCALS will require prescreening and a good zoom conversation to make sure it makes good sense for both you guys and the organization.... but again, worth a try I think. And although they don't charge anything a donation to keep paying it forward for the great work they do is greatly appreciated. They may be able to help you other ways as well.

Finally, we personally took two week long trips when my wife was further along than you. For the first one, we rented a U-Haul and brought her recliner, hospital bed and other equipment along. For the second one, we fit her recliner in our Odyssey (I'm like your son, love that Odyssey) and we found a company that very affordably provided a hospital bed at our destination. They came and set it up and came back and dismantled it and took it back. Not sure how helpful that would be for you since you'd need a recliner at few different locations and your recliner sounds pretty doable to bring along. Google search 'medical equipment rentals' if interested in that.

Again, really hope you figure out how to make it to New England. The weather is pretty pleasant up here. :-} Jon

 

[Vincent]

There are foldable aluminium ramps one can use. We used them until we got a 2002 caravan with handicap mods. Yes it is old enough to vote, get married, join the army, even drink in Canada. The ramp is about 5' long and folds widthwise to slide in beside the seats. Hard to get in for your 6'+ people. But if she can transfer, this will get the chair in the car no problem.
Vincent

 

[ph115]

We definitely will have to take my recliner because there’s only one hotel along the way that possibly has recliners and it’s not in a good location trip wise. I’m thinking that maybe we should rent a trailer for some things that won’t fit into the Odyssey if we go that route. Personally I want to rent a handicap van but I am not having any luck with my son about it.

Once we get to our location in New Hampshire we will stay at the same place the whole time which is waterfront on a lake. Born and raised in Massachusetts we’ve been to the Cape many times and don’t want to deal with the traffic.

I have a lift on my wheelchair that was given to me by Team Gleason so I am aware of all things that they can help me with.

We may rent a scooter instead of taking the wheelchair. There may be problems at the lake with it because of the ground and gravel road, peastone driveway and roots from big old trees in one of the yards.

Thanks for your suggestions and I’ll keep you posted.

 

[Fusia]

I'm not sure why your son is so dead set against a wheelchair accessible van… I purchased a 2015 Toyota Sienna wheelchair van last fall (I had to stop driving at that point and sold my Honda Pilot, which I absolutely loved). I have not driven the van myself, but all of my caregivers and friends who drive it love it - they say it turns on a dime and it's very easy and comfortable to drive. Maybe you should have your son test drive a converted van, and he might change his mind. They are not cheap, but they hold their value for resale - if you deduct medical expenses on your taxes, the portion of the purchase price that is attributable to the conversion cost can be deducted as a medical expense. Honda Odyssey and Toyota Sienna are two common models that get converted to wheelchair accessible.

I have a Permobil F3 which works pretty well on gravel and uneven ground. If the ground is soft or sandy, though, I think any PWC will tend to get bogged down. But, as you probably know, a scooter likely won't be as comfortable as your PWC. Perhaps you could rent a scooter in New Hampshire to use while you are there, but also have your PWC with you?

 

[ph115]

We’ve rented handicap vans five times. Once a Toyota and Dodges the other times. They’re low to the ground and have to be careful coming out of our driveway at the street so they don’t drag. We don’t have enough medical costs for deductions.

Steve (son) is working on a lift for hubby’s scooter so that it will be the same height as the back seat and using a Beasy board to slide me in. We’ll rent a van if this doesn’t work.

My wheelchair won’t be able to get into the cottage even with ramps so I’ll rent a scooter to take with us

 

[ph115]

We still don’t know which way we’re going to go with the van or the rental. We have a Honda odyssey reserved but my son doesn’t think there’s any advantage to having that and not our own odyssey. He doesn’t want me to take my electric wheelchair because he doesn’t feel that it is safe. Also he doesn’t think I can sit in it for 10 hours a day. Plus right now He was thinking of just driving straight through which means 20 hours. My lazy boy recliner is too heavy to take and to have to take into hotels. We thought that in the rental van that I could get in using a scooter and a beazy board to transfer me to the backseat. However the backseat is higher than the scooter which would be a problem to get me from one state to another.