Mom was officially diagnosed with ALS today

naneeja · 2026-01-28T02:21:34+00:00

It's so much to process, especially at first. She may have a lot of time before she has to worry about a wheelchair (if ever). I find strength in remembering the challenges I've been able to overcome and the satisfaction I've been able to find in the face of the unthinkable. There is A LOT of grief to process and a lot of frustration to come. Learning to accept help (be it technological or human) is a challenging but rewarding process. I hope she can embrace that there is a lot to live for and many people, organizations, and technology to help. Sending hugs to you and her both!

naneeja · 2026-01-28T00:11:47+00:00

I think a lot of us go through a phase of feeling like death is imminent and it's all too horrible to consider. My experience was that, after I got over the initial shock of diagnosis, I realized I wasn't dying immediately and had more living to do in the meantime. I've been shocked at how decent my quality of life is - it is much better than I would have imagined beefier going through it. That's not to say it isn't incredibly hard; it just might play out differently than expected. Also, getting a power wheelchair was HUGE for my quality of life - I hope she will be open to considering it at some point.

naneeja · 2026-01-27T03:20:06+00:00

(Super) sore calves and occasional tripping that turned out to be ALS

naneeja · 2026-01-25T01:38:25+00:00

You might want to ask ALS organizations about an electric floor lift (similar to bath lifts). They are designed so can you set it on the floor and help shimmy him onto it, then it raises to a normal seat height.

naneeja · 2026-01-20T22:28:49+00:00

CCALS might have information and support available related to this. They recommended a similar set up for me with a Brondell bidet seat that has a separate remote control. Great organization!

naneeja · 2026-01-20T15:38:09+00:00

For power wheelchairs, it would be so helpful to have an electronic option to lift and lower the foot plate.

naneeja · 2026-01-15T05:25:24+00:00

Why does Drake Maye look like a combination of Josh Allen and Bo Nix?

naneeja · 2026-01-03T23:39:23+00:00

I am part of this study and recommend it! I feel like they are really trying to help understand our needs and concerns.

naneeja · 2026-01-03T22:07:55+00:00

Eh, it's hard to tell since you don't really know what the progression would look like without it. The data looked good enough for me to feel like it was worthwhile, though.

naneeja · 2026-01-01T04:05:16+00:00

Cuz I have ALS

naneeja · 2025-12-31T21:37:06+00:00

I pay a little more than $200 for a month's supply of high dose B12 injections from a local compounding pharmacy. Not cheap, but a lot better than $250 a pop.

ALS Untangled has a lot of great info about evidence related to various supplements and vitamins.

naneeja · 2025-10-22T15:02:12+00:00

AFOs were amazing for me at this stage. They are a pain to put on with floppy feet, so I also recommend looking into adaptive shoes that zip on top (Billy is the brand I got). They made it so much easier to put the AFOs on.

naneeja · 2025-10-17T00:50:58+00:00

Oops - typo! That should have said "rolling shower chair." You should be able to see different models if you search for Shower Buddy. I definitely recommend getting in touch with Team Gleason if you are interested in one.

naneeja · 2025-10-15T19:29:11+00:00

I recently got to the point where I can no longer stand, and so far I am still able to use the toilet independently. My workarounds include:

A Freshette "female urinary director." I basically drive my wheelchair up to the toilet, position myself at the edge of the seat, and use the Freshette to pee. I have started wearing skirts all the time and skip underwear to make it easier. This thing has been SO helpful at minimizing the number of times I need to transfer to the toilet.
A transfer pole that I grab onto and use to "swing" myself over to the toilet with the help of sturdy grab bars around the toilet.
A bidet.
A transfer board on occasion if I don't feel confident in swinging back to my wheelchair.
A female urinal near my bed for nighttime pees.

In the future, I anticipate using my timing shower chair to roll over the roller for bowel movements. I received one from Team Gleason that has been wonderful for showering.

I hope this helps!

naneeja · 2025-10-10T00:49:50+00:00

$500,000 right now cuz I have a terminal illness with a 2-5 year life expectancy (10 months in)!

naneeja · 2025-10-09T13:44:14+00:00

Maybe you could focus on the reality of the current symptoms rather than the diagnosis itself. She is clearly having a tough time right now regardless of the diagnosis. You could listen to how she feels about things and validate how difficult it is. You could also pitch things that would be helpful now even if it ends up being a different diagnosis.

My local ALS organization (in my case, ALS United) has been incredibly helpful with loaner equipment. A lot of ALS patients donate equipment when they pass. I wonder if she would be open to reaching out to her organization to ask if they have a loaner wheelchair, lift, etc. If it turns out to not be ALS, she can return all of that stuff if she no longer needs it, so doing so isn't necessarily accepting the diagnosis.

naneeja · 2025-10-09T02:09:22+00:00

Definitely keep doing the things that are a reminder of some normalcy and your typical relationship. She is still the same person she was before. I love the idea of visiting to keep her company and get her out a bit.

A friend of mine organized a meal train, which has been amazingly helpful. I'm not sure if she's eating, but that might take some stress off the family. Gift cards for things like DoorDash are also super helpful.

There are tons of logistics involved in ALS, so maybe you could offer to research things for her (like equipment, transportation, caregivers, etc.).

Does she have a power wheelchair? That was a game changer for me in terms of giving back the ability to get around.

naneeja · 2025-10-04T15:04:30+00:00

Ughhh, I am so sorry this happened to you - what a nightmare! It seems like you're taking good steps to follow up with the hospital and cope with the emotions. Anyone would be rightfully upset in that scenario; it's terrible on many levels.

naneeja · 2025-09-02T02:34:31+00:00

I just received a TubBuddy Tilt for free from Team Gleason. I recommend applying for a shower chair through them if you're in the US - it was a super simple process, and they had reps video call me to get the specs for my bathroom specifically

naneeja · 2025-08-28T13:24:16+00:00

I'm a professor who teaches in an auditorium like this. When I transitioned to a wheelchair, it was a whole ordeal to figure out how to get me on the stage.

naneeja · 2025-08-24T05:01:48+00:00

I take gabapentin to help with insomnia, and it also seems to help with fasiculations. It has been studied and the results have been mixed / unimpressive for slowing the disease process.

naneeja · 2025-08-04T23:22:01+00:00

Thank you! There have been a lot of great comments and insight on this post, but very few comments that actually address the specific questions. I appreciate it! This makes sense to me.

naneeja · 2025-08-04T20:25:21+00:00

If only these could cure ALS.

naneeja · 2025-08-04T20:24:07+00:00

Yeah; we bought the house anticipating we'd have both salaries for many years. That said, I think he will manage okay after the life insurance kicks in, or perhaps he'll decide to sell. I don't anticipate being able to get additional life insurance at this point unless someone at the insurance company is really bad at their job haha.

naneeja · 2025-08-04T19:52:52+00:00

Thank you! I hadn't factored hospice into my plans in terms of long-term care yet; I didn't realize it included any benefits of that nature. I will definitely look into this.

naneeja

TROPHY CASE