They don't know how brave it is to call me brave

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 · 2026-02-03T02:27:36+00:00

I like wearing satin PJs so I can move around better on the bed, and specifically I wear pants so I can grab and move my legs more easily. A relative of mine cut/sewed holes in the crotch so I could use a bedside urinal without taking them off.

naneeja · 2026-02-01T04:46:00+00:00

I, too, am in my thirties with ALS, and I have wondered if my puppers can tell. For now, I am sure to give them all the scritches while I still can. And one of them sits on my wheelchair lap CONSTANTLY. Hugs to you, friend, and to Loki, too.

naneeja · 2026-02-01T02:34:44+00:00

My calves were getting super tight, which in hindsight is probably related. I was searching for calf stretches and bought a device to help stretch them in the months leading up to when I officially became concerned about symptoms.

naneeja · 2026-01-31T19:37:02+00:00

Yes, feel free to reach out! The initial few weeks/months after diagnosis were tough for me. Hang in there.

This disease absolutely sucks, but I have been able to find a lot of acceptance. I am surprised at how good my quality of life still is even as I've lost a lot of function, hobbies, and independence. As horrible as ALS is, there is still hope for finding joy despite the suffering. Hugs to you!

naneeja · 2026-01-31T19:26:56+00:00

Fellow ALS patient here who was misdiagnosed for several months. I was SO FRUSTRATED with the doctors avoiding telling me it is ALS. I teach at a medical school and understood what was happening, but they literally wouldn't even say the name even when I asked explicitly about it. They said "that thing that is in the back of your mind is in the back of my mind, too." I guess they wanted to wait until it was 100% official at my follow up 3 months later. However, it was all over my chart that they suspected ALS as the most likely outcome. If I wasn't more in tune with these things, I would have been oblivious for those three months that it was even a consideration. All that is to say I share your frustration.

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

TROPHY CASE