Status
Not open for further replies.

krnNdug

Distinguished member
Joined
May 18, 2014
Messages
270
Reason
PALS
Diagnosis
02/2014
Country
US
State
AZ
City
Gilbert
Sorry for the rant in advance. I am frustrated with this ALS. We have had many blessings and support since I was diagnosed but it seems as though we are just barely treading water.

When we were told we were going to need a handicap van we were very thankful my grandmother had the van she and my grandfather used and she gave it to me. Now that I got my new Quantum (I need split legs rests for my spinal cord damage) it is to tall for the van. I sit with my head bent over and I am told I could break my neck if we hit a good sized bump. Maybe not a bad way to go, but not a way I want to go since my wife would be driving and feel so guilty.

We thought we were going to need to move because of the bathroom situation, well, my old baseball coach did a fundraiser and it has been covered. Now to get it done, but where do I go when it is out of commission. I can't use the 2 upstairs and I hate being dirty and what about using toilet.

I am sure we will figure it all out, but wanted to let it out a bit. As I said, overall it has been a very supportive time. Will I be saying that in a year or two? I think so, but with an eye gaze probably. And I know my wife/caregiver has it a lot tougher than me so why am I complaining!

I don't know if these posts are allowed here or not or where to put them. I know many have a lot worse problems & situations than me and I don't want to make mine seem bad, they are not compared to many out there. I am probably a lot better off than many and my heart hurts for those who don't have resources to "live" while die-ing with this disease.

Thanks for your patience.
Doug
 
Doug these posts are indeed allowed.

In the CALS section we had this thread going for many months called Pity Party.

It's good to have somewhere safe to let the steam off. We all understand, we've all been right there, or are heading there and it's always good I think to show the human side. It's really important that we give a lot of support and advice on practical things, but we also need to let the rest out.

How wonderful that your baseball coach did this fundraiser!

How long will the bathroom be out of commission? I think this will be one important thing to discuss with the contractor before the job starts so that it's as short a time as possible. Is there somewhere you can stay for a few days, or will it be longer?

The van thing tho is probably going to be a much harder fix. I agree, don't you dare let your wife feel guilty for breaking your neck!
 
Doug,

We've been through similar experiences to what you may now be going through. Perhaps if I explained our situation and how we coped, you may find something in the description that can help you. My PALS, my wife Darcey, had spinal onset ALS. The first symptoms were an inability to stand from a seated position and a tendency to have her feet trip her up while trying to walk. She went from walking, to walking with a cane, to walking with a walker to using a scooter before finally accepting the need for the power wheel chair (PWC). Her shower was in the upstairs bath tub. As she progressed, she began to need help to get into the tub to take her shower. First, it was only a shower chair to sit on. Then it was help getting that first leg up and over the side. And soon, it required a seat that slide from outside the tub to the inside. But there came a time when even trying to transfer from the scooter, turning to sit and being slide over and into the tub became a terrifying prospect. On shower nights, she'd have to psych herself up... with the help of a "Happy Pill"... to have the courage to get in and out of the shower. She shook because she was so afraid of falling... and only she knew just how close she was to that actually happening. Fortunately, I moved her away from that situation and its accompanying fear BEFORE she had a bad fall.

Darcey's wheelchair is a Quantum Edge 6... a much bigger/taller chair than the M300s I've seen. But we used that size to our advantage. We began to bathe in the kitchen sink. First, I'd put the chair in manual by disengaging the motors. I'd have her lean back and then pulled her up to the sink. Once she was back far enough that her neck would rest on the edge of the sink, I put a hand towel down to cushion her neck. I then engaged the motors again so she'd stay where I'd moved her. From there, it was easy to wash her hair with the sprayer from the kitchen sink. I then used various wet wipes, waterless cleansers or wet washcloths to clean the rest of her while still in the chair. Yes... it was a bit of work... but it was so much better to be done with smiles instead of the absolute terror that accompanied trying to get into the tub. We did this until our bathroom remodel was done. She is now fully unable to stand or walk. So I use a Hoyer lift to move her from the PWC to the portable commode (if we are downstairs) or the toilet in remodeled bathroom (if we are upstairs) and into the shower chair on shower nights. I can't even begin to describe how wonderful showers are for her, now. The comparative joy far outweighs the work involved in making it happen.

When we found that Darcey's legs would no longer support her during transfers from the scooter or PWC into and out of the front passenger seat in our van, we went looking for a conversion van. The Quantum sits high... and, as such, she could not get into the van while still in her chair. And, remember... we'd now reach the point in progression wherein transfers (using her legs) were dangerous if not impossible. And so I began to research wheelchair vans.

Darcey is not only my wife but is also my business partner. We needed something that she could drive into with her PWC and (ideally) sit up front in the van while I drove. The conversion vans lower the floor by 7 - 11" depending up manufacturer. We have a 2013 Honda Odyssey with the Braunability Entervan conversion (floor lowered by 7"). That was enough for her to be able to back into the van (I drive from behind her), turn and move forward into locking position in the passenger seat. She now is comfortable travelling with me, going to the store, shopping, working ... and now, going out to a restaurant to eat. These vans are out there, both new and used. New for the options I wanted was going to run just under $80,000. I bought ours, used with 450 miles on it and with the same options as the new van (a 2013 instead of a 2014) for under $50,000. And I've seen older Dodge and Chrysler models in the $15,000 - $20,000 range.

If purchasing a new/used van is not in the picture, check with your local ALS organization to find out what public conveyances might be available. Many cities have public buses with wheelchair lifts. You drive into the lift, it raises, you drive into the bus or van and go where you need to go. This option is often overlooked. And when one is trying to balance ALS out of pocket expenses with all that this encompasses... any cost savings is much appreciated.

With the van, we also bring to work a portable hoyer and our much favored Liko Hygiene Sling. We have a portable commode in a separate room at work because the hoyer won't fit into the bathroom. As such, Darcey is still able to come into work with me each and every day. By continuing to adjust to do the same things we did pre-ALS... we've developed a process that allows us to feel like "We're Owning ALS" rather than it owning us. And that, my friend, is just the leverage we need to keep our spirits on the high side during this ride.

Somewhere in here, I hope you've found something that you can take and use for yourself. If you have any questions, let me know and I'll be glad to try and answer them. If you want to Private Message (PM), please do so. If you cannot, let me know you'd like a PM and I'll initiate one. But above all things... don't feel that you are out there alone. You are not. WE... all of us who are going through these same things as you are... are but a post away...

Jim
 
Doug, I believe there are also portable showers that you can get and set up in almost any room and potty chairs. I'd check with your local ALSA to see about a loaner while the bathroom is out of commission
 
im with you on the rant. i seen on here where if you a vet they will pay so much for a van. but if like me not a vet. after paying off everything didn't live much for a van. hopefully this weekend we will have one. i was able to sell one if my trucks to get it. like i need that any more. now i got to come up with a ramp for it and the house. my boys tried to put me in one and the city put a stop to it. the one they want to do it. it's going to take around 10k. i think it's all bs. with kansas laws they don't pay for much of this stuff. i talked to my alsm and he said sorry but they will pay up to 500 on any work you may need on your wc. they said they was going to bring me a bed to make where i can get in and out of it. well they told me this 4 times now. im still sleeping in a chair. here is the thing that gets me the most. i am only about two miles from the state line in to mo and i would of get everything pad for. it bad when you have to pay out your ass to diy. but that's all right they can bleed on me all they want.
 
I've known of a number of wheelchair ramps that have been built by Boy Scouts seeking to do their Eagle Scout Project. They will get donations for supplies from local businesses and will have someone with some experience come in to help supervise the Scouts on the project. You can ask your local Boy Scout office for information.

Jim (also an Eagle Scout...)
 
Doug, understand your dilemma ! We are currently ready to do bathroom remodel, door widening, etc. and my hubby just can NOT take the chaos of noise, dirt, chaos. Too hard when every day is such an effort. Fortunately, we have a small place in Florida, so will fly there during the mess- even though he is concerned about further progression and what ifs about not being able to get home The lesser of two evils for him- for me, the healthiest place for us to be with cold weather setting in. Hopefully, you can find a place somewhere as well. Lots of adjustments for all of us. Hugs to you both.
 
Doug,
Rant all you want. That's why this forum is here. We are all experiencing the same thing you are. There is no good ALS or bad ALS. There is only ALS. I do wish we had a chat room. I think that would be a great way to get to each other. Maybe someday. (Get on that nicki) :).
 
>now i got to come up with a ramp for it and the house. my boys tried to put me in one and the city put a stop to it. the one they want to do it. it's going to take around 10k.

how log, how high -- i may have one you can heve
 
i have to have the boys see how high it is. i know that the one they use to get the chair in was not long enough. the boys picked up and put it in the house for me.
 
:)Thanks so much. You all do know how to lift spirits and have some excellent advice.

We have some nice neighbors who have offered to let me use their showers, the toilet may be another issue, but we will cross that bridge when we come to it. I like the idea of using my Edge to lay back and get my hair washed. I will contact the local scouts, great suggestion. I was a Sea Scout, but that won't work here. Our outlaws (my son-in-law's parents) were going to do a ride for funds with their motorcycle club for the shower, but saw what my coach did. They may do one for help with the van now.

So, basically a lot has changed in 24 hours, or at least in the process of changing. Change is a constant.:)
 
:)

sometimes things seem so impossible, then a rant, a deep breath, a sleep and possibilities begin to open up

thanks for the update
 
Status
Not open for further replies.
Back
Top