Advanced care suggestions for bulbar ALS

Lostbutlearning

New member
Joined
Apr 23, 2024
Messages
1
Reason
CALS
Diagnosis
09/2022
Country
US
State
IL
City
Ringwood
My wife was diagnosed with bulbar onset ALS in September of 2022. Since her diagnosis, she has lost the ability to eat, drink, talk, and walk. She has a feeding tube, & uses a Bipap for 6-8 hours every night which helps tremendously.

Her hand neuropathy
has advanced to the point where she can barely perform her own dental/oral care. I purchased a suction toothbrush which will help me prevent her choking when I transition to performing all her oral care.

We use a Hoyer lift for all transfers except her morning get out of bed routine. For that, we use a gait belt and perform a pivot transfer from her sitting on the side of the bed onto the commode.

We also obtained some adaptive clothing to help simplify transfers.

We also have a PureWick device to help alleviate the need to do potty transfers in the middle of the night. It is a very useful machine, but it can take time to adapt to and is expensive to operate since each external catheter costs around $6.00). She is still trying to adapt to it.

I’m wondering how other CALS have delt with these challenges. Things like dental/oral hygiene, transfers, clothing for your PALS, potty needs, communicating spontaneously during transfers ect., or at times when she can’t easily type on her phone or use her eye gaze device.

This is all new territory for me (as the illness progresses), so any practical information regarding these topics would be appreciated.

I have private pay care giver assistance every day from 8:00 AM - 2:00 PM, and evenings Mon- Fri from 8:00 PM -11:00 PM. I’m solo on weekend nights.

My wife is extremely positive and patient, which helps ease the challenges of caregiving. I’m not handling it so well, which is why I elected to spend the money on care giver assistance. If I didn’t, I’d most likely have significant mental and physical issues of my own to deal with.

Thank you for your input.
 
Welcome to the forums, while sorry you are here. We will support you and your wife however we can.

Most PALS do not need a night-time catheter, if they can maintain normal sleep architecture (stages of sleep), which is what enables most people to stay asleep and not need to pee until they've slept. So if the catheter is an issue, sleep is always worth tackling anyway -- pain, positioning, the right bed setup, temperature, noise, room/machine humidity, allergens. Each of these usually has a solution. Even when on a BiPAP, moving air with a continual fan can be helpful as well. A female urinal can be used in bed/chair/lift settings.

For an early holiday gift, many PALS in colder climates could benefit from a low voltage heated mattress pad under their mattress overlay. Relaxing the muscles really helps maintain sleep.

Some CALS use manual individual-size disposable toothbrushes to better control saliva and irritation. Suction is drying and invasive, obviously, and some PALS do better than others with that.

For communication during transfers, you might have a preset menu of common needs, like go slow or stop for a minute, that she can tie to blinks or gestures. You could have a prearranged check-in point, where you look at her to see if she has feedback. However, Hoyer transfers should be pretty fast overall, so not sure what the concern is.

I would be very aware of her neck/back/joints during gait belt use and switch over to the Hoyer even before you think you need to, because it's not a point you want to miss.
 
Hello, it sounds like you're taking great steps. My PALS has limb onset ALS but is at a stage where it sounds like they share many symptoms. Some things I've found helpful:

She uses Hoyer, both a regular and toileting sling. The toileting sling, because of it going under the arms and putting pressure on torso, makes it harder for her to breathe even when she has her bipap on. We have a system where during any time up in the sling (for example, getting dressed and she is up in the sling to pull up underwear/pants rest of the way), she will nod or shake her head to indicate if she needs to be set down temporarily, could also use blink signals for this.
We're also able to cut down on time hoisted in the sling using a combo shower/commode rolling chair that has a large cutout beneath. When she's done we can remove the pan and do cleaning while she's seated. It also tilts back for comfort. We love this chair and got it on loan from our local ALS Association.

For a long time we also used a Superslide transfer board for transfers between two chairs. It's a very slippery board, and was helpful in sparing my back lifting her during a pivot transfer. She is in a Broda chair much of the time now, which has bulky immovable arms, so it's not useful there.

We use a two-shelf rolling cart for her bipap with humidifier, so it can follow her between chair, bed and table because she no longer uses it only at night. It has a very long cord which is nice. The full face mask bothered her nose, they found us a half one that covers mouth but just sits under nose and has a single flat cushion with nostril cutouts, rather than the nostril pillows kind.

We perform all her oral hygiene, flossing and brushing. She is still able to spit which is helpful - I can see how a suction brush could help if not.

I haven't found adaptive pants helpful to be honest, maybe if it was still in the earlier stages where she could stand with assistance. But we're probably switching to adaptive shirts soon. My Dad had Parkinsons, and the shirts with velcro enclosures were very helpful. Often existing shirts can be modified easily if you know anyone handy with basic sewing.

Having 80 million pillows and cushions has helped for positioning. She also has a pair of the soft, full foot boot-style cushions which are great. Also a simple neck brace, I wish it was more adjustable to be honest, but had a hard time finding one that fit at all.
 
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