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Lory

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Baltimore
I would love any stories and advice about this, as it's a big unknown for me. For PALs who are in wheelchairs, how often do you typically need to transfer/reposition yourself during the day? My mom is going to be my dad's primary caregiver- she's in good health but not big and super strong. If she is going to be home with my dad during the day, I'm concerned how she is going to do this herself. I know there are tilt-in-space wheelchairs that help with this but I would love to know what a typical day is like for a PAL and/or a caregiver. I was imagining a person needing to be transferred/repositioned constantly throughout the day, which is one reason why I was worried we would need live-in help for my mom (or else he would have to go to a facility). Thanks so much, this board is so helpful!
 
Lory, it depends upon each PALS progression. Annie's started in her legs, then her torso weakened, then her arms, and finally hands. So she needed to be in a wheelchair fairly early but didn't need help in shifting her position for quite a while. She was also able to transfer herself from the chair to the toilet for a while, even though she couldn't walk.

She eventually had to go from a basic power chair (no power seat functions) to a rehab chair. Once the chair gets properly fitted the PALS can effectively change their position with the various power seat functions, e.g., tilt, recline, elevate, and power leg lift until strength is lost in too many places.

Eventually, most PALS will need a CALS to transfer them, but a lift can be used for that. We used a hoyer type lift, which worked very well.

The frequency of transferring will be different if the PALS develops urinary or fecal incontinence. Catheters are typically used for patients with urinary incontinence, which means that toilet transfers for that function will be virtually eliminated. If they develop fecal incontinence then a diaper is going to be required and may need to be changed several times a day.

There are so many unknowns at this stage for your dad that it can wear you out thinking about all the "what-ifs". I know that I went through that myself. So you just take it as it comes, planning for anything that can reasonably be foreseen, but keeping in mind that not all PALS experience every possible loss or for the same duration.

I wish you and your parents much grace and peace in dealing with your dad's illness.
 
As Annie's Phil said it is different with each PAL. My husband needed to be transferred constantly, with his muscles deteriorating he just could not be comfortable. For many months we would put a towel across his back and then forward under his armpits, I would then stand in front of him, hold each end of the towel and lift him up into a standing position, with him standing on a transfer disc if he needed to be put back to bed from his chair. This method is really only possible as long as he could straighten out his legs and support himself. It takes some brute strength but is not impossible, now that he is so weak we are using a hoyer lift, they take some time to get used to and often require 2 people, but is much better than breaking my back trying to lift a dead weight. Your mother will need help in the future, not only for his sake but hers too.

Take this day to day, and give them both as much love as you can.
 
Lory, so sorry you have to be here. I am 61 and my husband is 65, similar ages as your parents, and we plan for Gary to stay at home. September 1 will be the third anniversary of his ALS diagnosis. Until about four months ago, he was able to use a walker to take a few steps for transfers from wheelchair to bed or toilet; now we use a stand-up lift for transfers, which is very easy for one person to manage. We were lucky to borrow an Invacare Reliant 350 from a loan closet, and it has been a life saver! He must be able to bear some weight on his legs to use this, so we will use a hoyer lift (which I am hoping to do by myself) when it becomes necessary. I'm guessing that we do ten transfers a day - haven't ever counted, but I'll put that on my to do list!

Try to slow down! Anticipating your dad's progression and transfer needs when he can still walk unassisted will make you go crazy.
 
I'll chime in also that everyone is different. I am only transferred 3 or 4 times. Once in the morning bed to pwc, and then 2 or 3 all in the evening (pwc to toilet, toilet to bed or shower chair, shower chair to bed ). All of these using Hoyer lift. I am in my pwc all day. I use the power controls to adjust my position periodically throughout the day. I have a ROHO seat and back cushion for my pwc. I do need help from others sometimes adjusting in the chair but mostly for moving hips over some and it's not too hard once you position the chair first.
 
My routine is pretty much the same as Brian's. I am in the chair all day. Have been since 2011. The ROHO seat cushion is very important. No issues with pressure sores yet.
Tom
 
My dad sits most of his day in his lift recliner. He doesn't use his PWC as much as other's do.
 
Your mom will NEED a powerchair that allows her to tilt and recline and adjust her leg position with the press of a button. It is very important that she reposition herself often to avoid pain, stiffness, and pressure sores.

I am transferred 5 times a day bed/chair/toilet/shower/chair/bed. Either need a strong person or a hoyer.

-Tom
 
Hi; Tim is in his power wheelchair all day. He is unable to weight bare at all, and he has lost most of the strength in his hands and arm. He is able to control the chair though, and changes the tilt when he feels a pressure point. The one advantage that a PALS has over a quadriplegic is that they can feel if they are developing a pressure point, and let someone know, or shift using their chair. Tim is up on the toilet, then to commode, tilt in space chair for shower, then into his chair. May be transferred using ceiling lift once or twice more to toilet, then into bed at night. He gets physic daily to keep his range of motion, and it also prevents his back and joints from aching. When he stopped being able to turn in bed, he would wake me every couple of hours to be repositioned, which was soon exhausting me. We want to sleep in the same bed for as long as we can, and he can still breath well sleeping flat, with his bi-pap machine. So we got an alternating air mattress that goes on his side of the bed, and a sheep skin for his heels. He now sleeps through the night with out waking to turn, and his skin is in excellent shape. One other note is that he doesn't seem to sweat as much when I use the bamboo fibre sheets, which is also better for his skin. I had been using 100% cotton, high thread count, but noticed that the sheets were damp with perspiration. When I changed to the bamboo sheets, one laundry day, we both noticed a definite difference. Works for my hot flashes too.8)
 
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