Transferring Question

[Dave K]

This is the kind of problem that Occupational Therapists are trained to assess. Your local ALS clinic should have an OT who can help you address this problem. There is a lot of information they will collect that you haven't told us about. For example, are you or anyone else able to assist him in a standing transfer by using a gait belt? Some people use rotating disks to help with this process. There are a lot of variables that need to be considered, including his level of spasticity and rate of progression. If you are stumped after trying the things suggested on this forum, this is something that a professional should be helping you with.

 

[Jrzygrl]

Thanks, Dave. It's on my "to-do" list to talk to the OT at our clinic. Unfortunately, the OT that has been out to the house has been of little help. My husband can still get up from our elevated toilet most times - with my help. Other times, he feels too weak and uses a transfer board. He doesn't currently have much spasticity, mostly weakness and atrophy. Up until 2016, his progression was pretty slow. 2016 was brutal. We're still learning how to cope.

 

[Dave K]

I don't mean to sound pessimistic, but you need to be prepared for when he can no longer stand. If he is too heavy to assist with a standing transfer, you'll likely need a sling, so the sooner he is fitted for one, the better. You should ask your clinic OT about getting him fitted for a divided leg sling (with head support) and a rolling, tilting commode chair with head support (which you can then roll over the toilet). It can take weeks, or even months, to get this stuff, so you should not wait to start the process. Even if he doesn't need this now and hates the idea of losing further function, you don't want to be caught without this equipment when he starts to need it. Note that utilization managers are often trained to deny coverage for shower chairs under a "hygiene exclusion," so it's critical for the OT to write the prescription for a "commode chair," without reference to bathing. We have also seen coverage denied under an "over the counter" exclusion, so it's important for the OT to emphasize the anthropometric measurements that must be made in order to properly customize the commode chair for the individual patient. And, again, don't forget to get a head/neck support on the sling and commode chair. Even if he has good neck strength now, that will eventually go away, too, and so, like everything else, the OT needs to be proactive when writing equipment orders.

 

[Dave K]

Unfortunately, the OT that has been out to the house has been of little help.

This is a huge problem for all of us. One thing you, and everyone else on this forum, can do is to tell your ALS clinic personnel that they need to actively coordinate with and educate the home health team, and tell the home health team that they need to actively coordinate with and learn from the ALS clinic. Too much health care happens in the homes of people with ALS for the clinics not to be involved in home health care. We should all be squeaky wheels on this issue, and eventually it will start to get addressed.

 

[Jrzygrl]

I agree, Dave, the home care people need to be better educated. We were at our clinic a few weeks ago and brought it up with the OT. We do have a hoyer lift for when the time comes. The first 3 times out to our house, the OT could not get my husband upright in the sling to show me how to transfer him to the toilet. I figured it out myself one day when he fell and I had to get him up from the floor. (Tired and tried to move too fast. I continually have to ask him to take his time.)

I talked with the clinic OT about the sling, and she said that was not the one she wanted for him. It was a split leg sling, but did not have enough loops on it to support him correctly. She ordered a new one on the spot and it showed up at our doorstep 2 days later. I also told her I wanted to look in to a new agency for home care. After that all happened, I ran in to a friend of mine who happens to be a recently retired OT. Told her what happened and she said it was ridiculous that they did not send someone correctly trained. Long story short - she has experience with ALS and offered to come out and help any time I needed it. I am going to take her up on her offer!

I am one stubborn, Irish, Jersey girl who is not afraid to speak her mind!

 

[Kathy K]

Rolling tilting commode chair with head support. ...
(I cant copy and paste )
I have never heard of this! It is exactly what I need. I continue to be astonished at the information available on this forum! Thanks to all who contribute.
Kathy

 

[lgelb]

Yes, there are more models of commode/shower chairs than ever, several designed for overnight travel. I think some of our answers were geared more toward daytime excursions. Some worth looking at are Seatara, Go Anywhere, Nuprodx and Showerbuddy. TravelPal is another but it would be more awkward as it does not have push handles.

 

[Dave K]

Rolling tilting commode chair with head support. ...
I have never heard of this! It is exactly what I need.

Ours was made by Raz Design (razdesigninc.com). I don't know what we would have done without it. We know some people whose insurance covered this, and others whose insurance denied it. In the latter case, we believe the local ALSA chapter got their Raz chairs for them.