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diagnosed2016

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Joined
Apr 30, 2016
Messages
190
Reason
Lost a loved one
Diagnosis
07/2016
Country
US
State
CA
City
California
Standing from a sitting position is getting really difficult for my husband. We just ordered raised toilet seats as well as the toilet pedestals. Will this be enough or should we look at getting an electric lifting seat? Are those even helpful? We have a very small bathroom that we plan to renovate this summer but ate not sure how to handle this issue. We will not have room for a Hoyer lift in there no matter what. We need to something to maintain his independence and not need me to help (for as long as possible of course). He currently uses a walker or can walk along counters/etc if holding on to things. Arm strength is ok but getting weaker.
 
This is something you should be addressing with the occupational therapist (OT) at your ALS clinic. In the meantime, here was our experience:

We tried raised toilet seats, but they did not help much or for very long. Grab bars helped more, but these, too became obsolete within a few months. For many months, toileting required assistance from someone with a Gait belt.

Eventually, however, the only working long-term solution for us was to get a rolling, tilting commode chair. The PALS is lifted out of bed or wheelchair using a divided leg sling (with head support) and then lowered onto the tilted commode chair. This is done outside of the bathroom. Then the chair is rolled into the bathroom and un-tilted, and then either (a) the PALS can void into the basin that comes with the chair, or (2) the chair can be rolled over the toilet, and the PALS can void into the toilet. Then, with the sling still on, the chair is again tilted, and the PALS is placed back into the bed or wheelchair.

Hints: Many insurance bureaucrats don't understand why a rolling, tilting commode chair is necessary and should be covered, so it is important to have the OT do a well-documented assessment and measurements for a custom chair and sling and write why it's medically necessary. If the OT has never done this, ask them to call around to other ALS clinics and talk to OTs who have had success with this.

Hint2: If you want to roll the chair over the toilet, you may need to create a splash guard and affix it to the bottom of the chair (I did this by cutting a 1 gal. plastic bucket to the desired shape and screwing it onto the chair bottom). Also, depending on the anatomy, a male PALS may need some help with aiming.

Hint 3: Besides the rolling, tilting commode chair, our other great piece of toileting equipment was the Hydrawand (handheld bidet wand) for cleaning.

To sum up, with the proper equipment, many PALS can avoid ever needing bedpans or diapers.
 
Thanks Dave. Ideally, our clinic date would be immediately since this issue has just become an "issue" this week and we would ask OT but we don't go back until August. Just wanted feedback on what people have done in the inbetween stages before wheelchairs.
 
We went through progressively higher toilet seat risers over a period of around eight months. Along with adjusting the height of our toilet.

I actually found that at the point I stopped being able to stand up from the top height manually I actually became unsafe using my riser recliner chair to stand me up as well so a toilet seat with riser function wouldn't have helped.

At that stage I had to change over to hoist and shower commode chair which felt sooo much safer. we had the hoist in ready and waiting but had a bit of a delay in the chair as it had to be custom made to fit our bidet toilet.

My advice is get the equipment in early as soon as you start to have worries.

Wendy
 
It all depends on the stage you are at. My wife bought me a 3inch toilet seat riser and we installed a grab handle and for now at is working fine. Works very well.
Al
 
Diagnosed phone your clinic and get your OT involved right now. ALS progression does not work in with scheduled appointments.

Planning ahead and being prepared in advance as much as possible is so important as progression can appear sudden when 'suddenly' something that was possible just isn't. The fact it is 'getting really difficult' means you need help sorting the right solution now - rather than having a crisis of he can't get off the toilet at all so it can't be used.

You have receive lots of great ideas here, but an OT in your own home will be invaluable now.
 
We have a small bathroom that a hoyer type lift would not fit in. When I was no longer able to get up from the toilet with assistance, which was also the same time I could no longer walk, we started using a sit-to-stand to get on and off the toilet and transfer to the wheelchair.

For me, this worked well for about a year until we needed to find another solution to get on and off the toilet, which for us, was a ceiling lift.

Below is a link to the model that we have so you can see what one looks like. Liko also makes some, but their website does not seem to be working this morning. I think sure hands makes one as well.

https://www.handicare.com/us/products/systemromedic-minilift200/p-317

Matt
 
We went through several difference seats and grab handles, all worked reasonably well for a bit but as my wife's als progressed it became increasing difficult. We moved to a bedside commode. It was relatively inexpensive but made moving her from bed to commode or chair to commode much easier. I can now use my lift to move her to and from the commodore without hurting her or me. I purchased commode liners with absorbent pads in them that make the clean up a breeze. It has made our lives easier.
 
diagnosed have you made any progress on this?
 
Elevated seats and toiletvator being installed this week. It will work until it doesn't and then we will move on to the next thing. seems to be how this disease goes.
 
Please let us know if you are happy with what gets installed, and maybe even a photo? (not with you on it of course :lol: )

Yep it will work until it doesn't, you have it right there!
 
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