Too disabled for ADA?

Trippy

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I share many of the gripes here for sure. I don’t need a raised seat yet if grab bars are in the right place, but they never quite are. I usually manage to use public toilets on my own but I touch some nasty surfaces with my legs and hands trying to support myself to pull up my pants😟 When I was using a transport chair my husband accompanied me in several busy public bathrooms, bless his soul, and he often comes in with me now just to make the process go faster.

Hotel rooms are very frustrating! Carpet makes it extremely hard to push a manual wheelchair over and there’s never enough room between the beds to maneuver a walker or wheelchair. Also I can’t get into or out of bed myself without grabbing something secure so I need my husband to help me. I also use a blanket lift for easier turning in bed so one more thing to haul with us.

I’m saddened too that taking off for a weekend has become such a monumental undertaking. Honestly, traveling isn’t worth the effort for us now unless it’s a special occasion. My husband is content with his many projects at home and I I’m usually content reading and painting, and especially if I can get outdoors on my recumbent trike. The one exception is that we’d love to visit our son in Japan, but I can’t even imagine planning for a trip like that..yikes.
 

Doglady

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A recent visit to our local ALS Association offices was disappointing regarding the bathroom situation. The facilities probably met standard ADA requirements however I would have been afraid to give them a try. They are in a big office building. Not sure they can get the landlord to do more. Just ironic.
 

KarenNWendyn

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The rehabilitation building where my local ALS clinic and many PT offices are held at least has grab bars on each side of the toilet, and lots of space for wheelchair maneuvering. Some of the toilets may even be taller than standard. But alas.... no toilet in a public facility will ever be tall enough for me any more. I feel like such a princess 🙄 and that’s so not like the old non-fussy me. At the last ALS clinic, I drank water sparingly beforehand and managed to “hold it” for 4 hours. Yesterday I had a PT appointment and brought along my trusty urinal 😅.
 

KimT

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For those who don't want to bother with Hoyer for pee transfers, there is the Purewick. It's a female external "catheter." There were rave reviews on Facebook. It qualifies for grant money from your local chapter and ALS Guardian Angels but I understand it is quite costly. They are using them in lots of hospitals instead of catheters to avoid infection.

Regarding toilet heights, I evacuated from the hurricane to Orlando and stayed in an "accessible" pricey hotel just outside Universal. I had what was called a private accessible bathroom off my bedroom. I couldn't see anything accessible about it. The shower rise was four inches and the toilet was designed for a dwarf. I wasn't thinking about it when I got up to pee during the night and my a$$ came down mighty hard. For a split second I thought I missed the toilet, then slam. My friend's bathroom had the same setup. No grab bars anywhere. Fortunately, the shower was narrow enough to brace each foot against the side so I wouldn't go down. I washed my hair with my eyes open for balance. They refunded me $350.
 

lgelb

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I would never advise someone to use the Hoyer just to pee. With a variety of urinals (and "external systems" such as Kim mentions, if urinals don't work in a particular situation), for female and male anatomy, there is no need.
 

Doglady

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The Pure Wick looks great but yes, expensive. It’s not covered by Medicare and unfortunately my local ALS Association does not have a grant program. They do many great things- just not that one. Looking at ALS Angels I would feel embarrassed to ask as I don’t feel like I would qualify financially. I wish the developer of this product would come up with a home based version that was more reasonable. They need to go on Shark Tank! 🤣
 

KimT

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There is a home version of it but I have no idea of the cost. I was surprised I qualified financially for ALS Angels but it was based on my income and expenses. My expenses have risen dramatically since ALS.
 

KarenNWendyn

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I looked the Purewick website, and they are very elusive about how much it costs. Does anyone here know?

Laurie, it’s interesting that you don’t advise using Hoyer just to pee. I had envisioned using it that way, but it seems I pee a lot, especially after a tube feeding, so I worry about burning out my CALS (or perhaps camping out on the toilet for 90 minutes after each feeding 🤣).

The comments everyone has provided here are extremely helpful, especially as I try to envision what lies ahead. Oh joy.
 

Trippy

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I’ve considered using an adult diaper for bike trips where there’s no bathroom for miles, or for travel just to avoid the hassle of a public rest area, but can’t quite get over that mental hurdle yet :confused: I used to have success peeing in a flexible cup on the bike trail or pulled over in the car on a country road, but now it takes way too long even with help getting my pants up, and inevitably someone comes riding down the road or trail😶 I might have to get over that hurdle at some point though if we want to go anywhere..it seems like the easiest solution..just pee in my pants:p
 

Ken15

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If I may, I'd like to summarize and, to some degree, expand on points made in this great thread:

From this CALS perspective, toileting is one of the most challenging aspects of caring for a PALS. Now, my PALS is not on a feeding tube or BiPAP or CPAP, so my opinion may change when or if that time comes.

Challenges with toileting are:
1. It's not on a regular schedule (anywhere from 1 to 3 hours, or more frequent if a UTI present)
2. It involves patient transfer (2 or 4 times depending on device(s) being used)
3. It impacts the ability of the PALS to get out of the house (social or travel) due to specific facility needs

Possible solutions are:
1. Adult diaper - have not used; how frequently do these need to be changed? do they contribute to UTI's?
2. Hand-held urinal - difficult to position? risk of spillage? can it be used if PALS has no arm/hand strength?
3. Commode/shower chair on wheels - this is what I use; 2 transfers for 1 toilet trip x 7-10 toilet trips per day
4. Sit-to-stand (see pic) - they used this with my PALS in April at the Mayo hospital; she liked it; but at that time she had some hand strength; she has none now
5. Raised toilet seat w/ handles - worked well while PALS had arm & hand strength
6. Pure Wick (see above)
7. Catheter - risk of infection? need to empty/clean/replace bag
8. Other?

It would be great if those who have experience using any of the above devices could chime in and list pros/cons.

Ken
sit-to-stand.png
 

KarenNWendyn

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Ken, I’ve tried “wellness briefs” disposable diapers for travel. They are supposed to last 8 hours. They do wick, but I still felt wet, which I didn’t like. It takes a while to get used to the idea of peeing in your pants. I see it as an option if I go for an outing that lasts several hours or more.

I also tried the Advantage female urinal with “comfort fit”. It works great provided someone else holds it for me with me standing. I think it would be hard to use sitting. It should be doable lying down if PALS is not wearing undies. Might help you avoid a Hoyer trip in the middle of the night.

The Purewick sounds like it would be a huge timesaver, but is apparently costly.

Re: tube feeding. It is simple and straightforward. It takes my CALS about 15-20” to do a feeding including all the prep time and cleanup. Of course the time adds up. Then there are multiple trips to the bathroom for up to 90” after a feeding because it’s basically like drinking a huge bowl of soup with extra water.

BiPAP takes minimal time.
 

Doglady

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I’ve used the Advantage urinal system too but in a reclining position. Urinals can be held by either pals or Cals - but some hand strength is required. I frequently leak using a urinal so always sit on a washable bed pad, too. I’ve heard some say they use female urinals sitting on the front edge of their wheelchair. I assume you’d need some strength to manage it. I’m not very successful or happy with urinals but some people have great experiences.

As far as other options- there are also suprapubic catheters. These have received positive feedback in other threads. I’ve been talking with a urologist about one but haven’t yet decided.

Lately I’ve been using an overnight incontinence brief which doesn’t feel wet to me and usually doesn’t leak. Seems to last a good 8+ hours. But again, a washable pad is needed if you don’t want to change bedding. My urologist said it’s ok to cut off liquids after 6pm which I sometimes do. Wouldn’t it be nice to be able to sleep all night without needing to pee?!?

Transfers are getting very hard so I need to find a workable day time solution. For little excursions I wear an incontinence pad for insurance because I am too disabled for ADA bathrooms.

This topic and the posts have been really great. Thanks, everyone.
 

Doglady

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I called Purewick. There are a few websites and phone numbers out there but all seemed to lead to customer service at Liberator Medical. They really want to get all your information and send you a package but I insisted on talking to someone about prices so eventually was transferred to a person with answers. It seems like the machine part is about $300 and a one month supply (30) of the single use wicks is about $200. I questioned if this was truly a one month supply since each wand is good for about 8 hours. The guy on the phone said the system only works when you are laying down so normally just at night. Tubing needs changing once a month and that’s about $60.

Funnily enough I saw my first tv commercial for this product today.
 

KarenNWendyn

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I called Purewick. There are a few websites and phone numbers out there but all seemed to lead to customer service at Liberator Medical. They really want to get all your information and send you a package but I insisted on talking to someone about prices so eventually was transferred to a person with answers. It seems like the machine part is about $300 and a one month supply (30) of the single use wicks is about $200. I questioned if this was truly a one month supply since each wand is good for about 8 hours. The guy on the phone said the system only works when you are laying down so normally just at night. Tubing needs changing once a month and that’s about $60.

Funnily enough I saw my first tv commercial for this product today.
That’s disappointing. I had envisioned that it could be used during the day while sitting in a chair (the website seems to suggest you can use it sitting or lying down), and then disconnecting the tubing from the machine if you wanted to be out and about. If you used it that way and changed wicks every 8 hours, it would cost $660/ month ($600 for wicks + $60 for tubing) . But apparently it’s not designed to be used that way. Confusing.
 

lgelb

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That kind of money is completely ridiculous for wicks and tubes, IMHO. It is the female anatomy that needs to be accommodated; gravity works the same way for any gender and a container is a container.

Check out Pibella (their site includes content for wheelchair users; they have one version for sitting and another for lying down). There are other similar devices but theirs seems the best reviewed and I do have a bias toward western European manufacture.
 
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