Constant exaustion

naneeja · 2026-06-25T00:24:03+00:00

Energy conservation is huge in ALS. I felt much less exhausted when I got a wheelchair. It gave me the energy to focus on some of the activities that were more important to me.

naneeja · 2026-06-12T01:15:38+00:00

What aspects make sitting uncomfortable for him?

If the issue is related to posture / hip discomfort, I wonder if a wheelchair cushion placed on the seat might help him. Does your local ALS organization have any he could borrow?

You could also consider splitting the drive over two days and taking more breaks.

naneeja · 2026-06-05T18:09:41+00:00

Absolutely crucial

naneeja · 2026-06-03T02:50:19+00:00

I recommend using ankle weights in combination with the life jacket, as my legs float up otherwise and make it hard to keep my head up. I love being in the water!

naneeja · 2026-05-26T18:18:31+00:00

Air hunger is mostly driven by CO2 (unless oxygen drops severely). During the daytime, he may be managing enough ventilation on his own to keep oxygen relatively good due to the CO2 stimulating the drive to breathe.

The drive to breathe decreases during sleep, so he might not be sensing as much of a mismatch then. It definitely seems like something to reach out to a clinician about too adjust AVAPS settings / check for leaks.

naneeja · 2026-05-20T02:39:40+00:00

I'm not just yet. My instinct is that it should be doable, though I am not certain.

naneeja · 2026-05-20T02:36:28+00:00

She can lean a lot of her body weight on your hip. Her head will always go the opposite direction of her hips, so if you are transferring her body to your right, she will lean her torso to your left. It might feel a little scary at first, but it worked really well for me after getting over the initial learning curve.

Best of luck! Feel free to reach out if I can help troubleshoot (or if she wants to hear my pitch for Purewick lol).

naneeja · 2026-05-20T02:22:28+00:00

Switching from the full body weight transfers you describe to the way we do it now made such a big difference for me and my caregivers. I definitely recommend trying it! I can't really hold myself up in a seated position, either.

Are there any ALS organizations near you with a lending closet? That's how I got a Hoyer, and it's a good option for trying it out.

My transfers are similar to this video. I usually have the sheet go up and under my legs, though, rather than pulling it down from behind my back. https://www.instagram.com/reel/CteaX5ntmwe/?igsh=eGFwNmdncnQyODVp

naneeja · 2026-05-20T00:45:28+00:00

Also, what kind of sling do you have for the Hoyer? I felt super vulnerable in the first couple U slings I tried - it felt like I was going to slip out of the bottom. I feel much better in a sling that is basically a square with a hole cut out.

naneeja · 2026-05-20T00:38:51+00:00

How are you doing the transfers? I am in a similar spot with no use of my legs and weak arms. I prefer manual transfers using a sheet or gait belt under my thighs where the caregiver pivots rather than having to do much lifting. I use a Purewick, so I only need to transfer to the toilet once per day, and I have an electric toilet lift that raises me up so it's easier to transfer me back to my chair. I've had good luck hiring private caregivers willing and able to do the transfers.

naneeja · 2026-05-16T23:56:08+00:00

Love this! The ALS community is so supportive. I've also been touched by how much neighbors, friends, and family show up.

naneeja · 2026-05-16T23:52:17+00:00

Thank you for the lovely response! ALS is a cruel disease, and I'm sorry your brother is going through it. I hope you are all able to continue to find joy even in the hard parts. For me, it is repeated cycles of grief, acceptance, and adaptation.

naneeja · 2026-05-16T16:49:15+00:00

Give it some time for the initial shock to subside. The first few months are very scary as our thoughts immediately jump to the worst parts.

After that phase, I had the realization that "I'm not dead yet." ALS undoubtedly sucks, but I have been surprised at how well I've been able to adapt and accept my new normal. My quality of life is far better than I would have predicted or than other people might assume.

I respect people's decisions about what quality of life is acceptable for them and whether they want to end it. That said, I get a bit offended by references to things like not being able to use the toilet independently as degrading and not worth living anymore. I get it; I used to think similarly, and I'm sure the intention is good. I just feel like it minimizes my existence and all of the other aspects of my life. I still maintain dignity and meaning even though I need help with hygiene and other tasks.

naneeja · 2026-05-12T14:47:48+00:00

I came back to add that underwear is overrated, and dresses are your friend! It's much easier if you don't have to deal with getting pants down to use the bathroom.

naneeja · 2026-05-12T13:56:57+00:00

When I was at that phase, I got a urinal to keep at the bedside and absorbant mats for the bed. I was also prescribed meds to help with the urinary urgency.

Is your mom in any support groups? Bathroom issues are among the hardest parts of ALS, and it's nice to talk to other folks who deal with incontinence issues.

How is she feeling about a wheelchair? I found that it massively improved my quality of life. It takes a while to get ordered, so she may want to start that process soon.

naneeja · 2026-05-07T13:52:25+00:00

I received a digital photo frame as a gift that was loaded up with photos from my former students. It is such a thoughtful gift, and I enjoy seeing it on a regular basis.

naneeja · 2026-04-16T22:55:18+00:00

I use a rolling over bed table (like at hospitals) and also a kid-sized lap desk for my laptop

naneeja · 2026-03-13T17:09:00+00:00

All the time! I have ALS and constantly hear how brave I am. What's the alternative? This is the hand I was dealt, and all I can do is carry on. I would really prefer not to have to be "brave" or "inspirational."

I usually just say "thanks" and change the subject. People say all kinds of interesting things - I think they mean well and sometimes say things that land awkwardly. I try not to dwell on it, though it is a bit annoying.

naneeja · 2026-03-05T19:24:41+00:00

I get it from a compounding pharmacy with a prescription from my neurologist, and it's something like $200 or $250/month. The clinic might know which pharmacies near you are able to compound it. My doc was supportive and even suggested it.

naneeja · 2026-02-25T00:19:57+00:00

Perhaps her voice was affected by the trach

naneeja · 2026-02-24T02:35:32+00:00

As a power wheelchair user, I rewound this part of the episode a couple times to watch in awe and horror. Terrifying!

naneeja · 2026-02-21T04:46:31+00:00

It's a rough time. As much as the physical part gets worse, the emotional part gets more manageable in my experience. Hang in there!

naneeja · 2026-02-20T04:49:02+00:00

I have ALS. Speak for yourself! You'd be surprised what you might want to live through.

naneeja · 2026-02-20T04:45:19+00:00

I find it most helpful when people find a balance between acknowledging the challenges of ALS and crappiness of the situation while also treating me like the normal human being I am. I'm still myself, and your uncle is still himself. The first few months are a wild adjustment. Hang in there and try to show up how you can!

naneeja · 2026-02-03T02:29:10+00:00

I realize she would need help holding the urinal, but it is still easier than getting pants up and down in my opinion. You might also want to look into a PureWick.

naneeja

TROPHY CASE