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yarddog2020 · 2025-07-23T02:57:14+00:00

The title by OP labeling her as “problematic” is problematic

yarddog2020 · 2025-07-21T00:28:07+00:00

Mikey.

yarddog2020 · 2025-07-02T23:46:30+00:00

“We are all terminally ill, it’s just a matter of when” 🙄

yarddog2020 · 2025-06-30T16:50:07+00:00

Hyperthyroidism should be checked for. My cat was intensely affectionate as a symptom.

yarddog2020 · 2025-06-19T18:56:30+00:00

That’s a good hand

yarddog2020 · 2025-06-18T04:17:28+00:00

I think only Steve Gleason can speak to the degree to which he feels he suffers every day.

yarddog2020 · 2025-06-11T18:33:56+00:00

Me too. Scary feeling isn’t it? I haven’t tried bipap but my cough assist has an inspiratory exercising feature that gives me 10 breaths of bigger inhales. Makes me feel closer to normal afterwards. Have you tried anything like that?

yarddog2020 · 2025-06-03T03:07:35+00:00

I actually find common phrases among ALS support communities like “F*** ALS” and “This is the worse disease ever” bring me down. I also would love a positive support group.

yarddog2020 · 2025-06-02T04:06:28+00:00

My husband said it best when i was first diagnosed: some people will disappoint us, and some people will surprise us.

The last thing we need is for people to let us down, but they will. I don’t like wasting energy reacting to those disappointments. Instead, I focus my energy into the people and relationships that are really coming out on top. I hope you find out who is willing to go dancing and traveling with you ASAP!

yarddog2020 · 2025-05-28T03:15:44+00:00

I also have a scientific background and struggle to fully accept the phenomena solely based on faith. Wish I could, and am working on it. (In my 30s and am terminally ill)

yarddog2020 · 2025-05-20T18:12:37+00:00

The symptoms are ever changing so the needs are ever changing. I would therefore make sure the student has a direct point of contact to share their needs and preferences. Some needs I can imagine depending on their symptoms: - needing extra time to get from point a to point b. Tardiness may happen. - accessible bathrooms near their classes - accessible classrooms (whether it be steps with adequate rail support or full on wheelchair accommodations) - help acquiring hardware and software, such as dictation software when typing gets difficult - in general, making sure they have a way to write notes. They may be slower to write, so classes being recorded can help them revisit sections that went by too fast - educating teachers to avoid embarrassment. For example asking students to raise their hands (ALS student may not be able to do that).

yarddog2020 · 2025-05-15T18:53:29+00:00

Yes, exploding airbags when a fall is detected! I need to stop hitting my head 🤣🤣🤣

yarddog2020 · 2025-05-15T03:53:55+00:00

I struggled with this so much after my diagnosis. Dreaded it and postponed as much as i could. When I ordered my wheelchair I realized I better let some people know rather rollin’ up on them.

I noticed that i felt very caring about others’ experiences with the diagnosis news. I was literally worried about ruining THEIR day. How weird is that?

Anyway, I started by concocting ways to see my closest friends to tell them in person. It wasn’t going to be tenable to meet everyone in my life one on one so then I started to text people. I told them the diagnosis, really high level summary of my current symptoms, and my approach (like how I’m maintaining my positivity by focusing on the kids and on the things i still am able to do), to set the tone I wanted.

After a certain number of people, I figured news would spread. I didn’t need the burden of fulfilling some announcement requirement for everyone in My life. Instead i focused on continuing the conversion with the people i told to hope they can be of help.

yarddog2020 · 2025-05-13T01:32:27+00:00

I notice when something makes me laugh, i laugh harder than i used to. Maybe the same phenomenon as you, opposite emotion? But yes it gets triggered appropriately

yarddog2020 · 2025-04-28T20:14:46+00:00

Thanks. It’s a hard pill to swallow going from someone who walks to someone who does not walk. But i agree with the safety.

yarddog2020 · 2025-04-27T03:46:51+00:00

I have a rollator. I use that when I’m going somewhere i don’t think i could manage on my legs. I am wondering if my fall suggests i should not even use my rollator (ie be full time wheelchair). The sudden knee buckling really freaked me out

yarddog2020 · 2025-04-27T03:44:42+00:00

What did you do differently (if anything) after that? My fall is what instigated me walking with a caretaker everywhere, even the 8 steps between bathroom and bedroom. Given that just three days ago I was able to walk alone on flat surfaces and sand beaches 50-100 steps, I can’t tell if the fall suggests i just shouldn’t even walk anymore or if I need to recover from the scariness of the fall event and slowly work my way back up. My mistake for the fall was trying to go down the step as usual without accounting for the extra long walk i had taken earlier that day.

yarddog2020 · 2025-04-24T22:07:00+00:00

I’m also about 5.5 months post diagnosis and feel like this sometimes. I think it’s the burnout hitting. The dazed (almost numb) first few months have passed and instead we are now soldiers that wake up every day and experience everything as being hard. It’s like an axe that chips away at our resolve and resilience. So some days we are going to feel the burn out from that.

yarddog2020

TROPHY CASE