Rapid progression

noh1m

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09/2018
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I am a new member and my older brothers co-caregiver.

It was about this time last year my brother noticed his left foot would drop when walking. Mid summer the muscle twitching started. He was diagnosed in September 2018. At that time he was still able to walk, drive and work but only with the aide of a walker. He started to lose balance and had 3 or 4 falls. But the last one, in December he fell and hit his head on the concrete floor. Maybe a coincidence or not but after that fall we think his progression was accelerated. Now he can only move his head. He has a peg tube as his swallowing is difficult and a food pump that runs constantly as well as a catheter.

We have a fairly good support system in this small town but the constant care required is starting to take its toll on his wife and myself. The hardest part now is trying to find the easiest way to transfer him from his power chair to the commode chair. His neck and core muscles are weaker now and he leans to the left . We just do the best we can but I am running out of ideas to make this transferring thing work. I can only imagine what comes next.

More to come I am sure.
 

lgelb

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A sad welcome, Hillsboro. Very sorry to hear about your brother.

Do you transfer him in a Hoyer lift while he's wearing a cervical collar?

Best,
Laurie
 

affected

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Sorry to welcome you here.

I'm afraid it is really common for progression to really hasten after a fall, it's horrible to watch.

I'm wondering too if you are using a hoyer type of hoist as this make transferring safe for both of you.
 

noh1m

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We use an electric Hoyer lift with head support sling (from ALSA) to get him in and out of bed. He is claustrophobic and the sling cocoons him which makes it hard for him to breath so he has to have his bipap on during transfer to/from bed. That took some getting used too but now he is a little more comfortable doing that. I think the ativan helps as well. For the transfer from power chair to/from commode we are using a sit to stand lift. That is working so far but he is hanging in the sling that rides under his armpits. We have a c-collar but it doesnt give the support you would think and he hates it (claustrophobic) so we are holding his head up and leaving the sling attached. I have been looking for other slings to use with the lifts we have.
 

lgelb

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It sounds like sit-to-stand may need to be superseded by the Hoyer. It does generally get to that point. A sling under his armpits puts him at risk for shoulder subluxation, as in ALS the joints are very weak.

There are many types of slings but most commonly a "divided leg"/U sling is used and should work fine for toileting.

There are also many collars, many at Neck Solutions. It's worth trying to find one that works. Sometimes if it feels like it's choking him, the foam may actually be too soft/forgiving, allowing the neck to sink into it. We used medium density foam and there is also firm density available.
 
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affected

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It does sound like the sit to stand lift has about seen its time of usefulness I'm afraid.

Using bipap with the hoyer is a good move, and you can use hoyer slings to go straight over a commode which is probably the best way for you all.

I hope you can find a good collar that doesn't give that claustrophobic effect - my husband refused all collars :(
 

noh1m

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Joined
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Loved one DX
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09/2018
Country
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North Dakota
I have talked with my brother before about the U sling for transfers to the commode chair. He was dead set against it. After telling him yesterday about the advise I got from you wonderful people and reading other posts on this forum, he is finally on board to trying the Hoyer for transfer from power chair to commode. His concern is if it will squeeze him like with the sling we use to transfer to his bed. Using that one he needs his bipap on because he can't breath. So if it does squeeze him, we will need to use the bipap to help him breath. Once he is in the commode chair, we can recline a little to keep his head upright, for now, his wife or myself holds his head if he needs the support.

I ordered a sling from Amazon and it should be here sometime between Wednesday and Monday. In the mean time I will try borrow one from the hospital/nursing home. During the transfer today, I heard a crack or pop in the shoulder. I didn't say anything but I will tell him tonight. He probably heard or felt it but, just like me, his back cracks, his knees crack and so on.
 

ReginaS

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Much luck with the u sling. We use it (sometimes) and it's the only one we use. We have others but they seem so much more complicated.
 
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