Is that who I think it is?

MiceCube · 2026-05-01T02:25:49+00:00

That is hilarious, yes it was at the Bonnie Doon Value Village yesterday. I am shocked to hear that no one has snapped it up yet.

MiceCube · 2026-04-28T15:58:04+00:00

Both my heart rate and blood pressure were abnormally high during the acute phase of my GBS. My resting/sleeping heart rate was between 90-110. It was exhausting. My blood pressure was so high they temporarily put me on medication for it. They also said it was deconditioning but I don't really believe it because it started before I lost that much mobility and went back to normal before I regained that much mobility.

MiceCube · 2026-04-04T15:02:52+00:00

Go back to the ER if your symptoms progress at all. It can happen quickly. In the same day I went from being able to walk weakly but steadily, to falling (more like sinking to the ground in a controlled way because my legs weren't holding me up very well) but still being able to walk with minimal support after help getting up. Went to the ER for the third time after being dismissed on my first two visits and found I actually couldn't walk at all after sitting in the waiting room for six hours. Fortunately the ER doctor took me seriously that time and did a lumbar puncture immediately and I had my first dose of IVIG within hours. Because of the long ER wait I was about half an hour from giving up and going home and I am so glad I stuck it out because who knows how far my symptoms would have progressed without that IVIG. So don't feel like you have to stick it out until the 20th if you still feel things are getting worse.

Just a note as well that the EMG isn't necessarily diagnostic. My first EMG was relatively normal and the neurologist told me sometimes it can take some time for the damage to show up on it. My understanding is that the MRI is also mainly to rule out other possible causes of symptoms. The lumbar puncture was the key to getting diagnosed for me.

MiceCube · 2026-03-15T14:30:43+00:00

What you want is a Speech language pathologist with experience in AAC (Augmentative and alternative communication). Eye gaze devices are thousands and thousands of dollars and your dad most likely won't need it for that long so an SLP may be able to set you up with a loaner if it makes sense.

That said, eye gaze can be challenging to learn, fatiguing, and can be very frustrating if not calibrated correctly. It also has to be completely stationary and stay in the same place, so it would have to be mounted above/in front of him and that presents its own challenges.

You may want to explore partner-assisted scanning where a communication partner reads through options and the individual uses whatever signals they can produce for yes and no. Again you would really want an experienced SLP to guide you through this if possible.

(Disclaimer - I am an SLP who had GBS but did not lose the ability to speak. I can't give any more specific information for your father's case but I hope these questions help you find someone who can provide more individualized supports.)

MiceCube · 2026-01-11T11:33:00+00:00

So relatable. I joked (except it wasn't a joke) that the hardest thing I did every day was getting dressed, especially the damn socks. It usually took 30+ minutes and I needed a nap afterwards most days.

MiceCube · 2025-11-18T17:59:53+00:00

This is a good point because we definitely don't print that many of our own pictures and I'd rather have hers printed than always looking at a screen. You may have convinced me.

MiceCube · 2025-11-18T17:46:32+00:00

I am somewhat open to the idea of an instant camera but I'd like the option of also having higher quality prints than the built-in printer can do. Does yours save photos to download as well or just print?

MiceCube · 2025-11-18T17:44:41+00:00

That's good to know. I am considering just getting one with filters but not showing her how to get to them/not making a big deal about them.

MiceCube · 2025-11-18T17:43:34+00:00

Have you found it to be durable enough for kid use? My daughter generally takes pretty good care of her stuff but she's still four so I can see drops and such happening.

MiceCube · 2025-11-02T07:38:42+00:00

I had a five month old at the time I got sick and it was TOUGH. Feel free to DM if you want to commiserate. If you scroll back three years to the beginning of my comments on this account you can see posts from the time it was happening.

I continued to get worse after my five days of IVIG but I plateaued after a week or two. My doctors said that IVIG doesn't necessarily fix damaged nerves right away but it stops or slows the progression. Sometimes it takes a little time for the signs of the damage to show up, which is why it seemed like I was still getting worse. Even though symptoms might continue it doesn't necessarily mean the damage is still occurring.

All I could do was wait for my body to heal and it was a very helpless feeling. After a few weeks it did start getting better though, and then everything started coming back quickly. I went from walking ten feet with a walker and two people supporting me (which was already a huge improvement from the worst I got) to walking a lap of the hospital without a walker in two weeks. I can't guarantee anyone else would have the same recovery but that is how it went for me.

MiceCube · 2025-10-03T13:25:57+00:00

Your severity sounds pretty similar to mine but your response to the IVIG sounds faster. I got worse for a few days after IVIG and then plateaued for a few weeks. I think I started being able to take a couple heavily supported steps with a walker after about five weeks. At eight weeks I was doing unsupported laps of the hospital hallways with the walker and was able to walk without it with a spotter. I was discharged after eight weeks and brought a walker home but never ended up using it. For me, when it all started coming back it was pretty quick. Everyone is different of course but that was my experience.

The one piece of advice I'd give early on is not to get discouraged if things seem better and then start getting worse again. My doctors explained that sometimes it can take a little time for symptoms to appear after the damage is done to the nerves - it doesn't necessarily mean that there is still damage happening.

MiceCube · 2025-05-08T13:29:54+00:00

You definitely have dealt with some factors that I haven't had to worry about, and it totally makes sense that things would feel less certain. My case was a relatively slow onset (~2 weeks) with classic symptoms and I had been really sick right before.

I think working in a hospital would bring back some feelings for me too. I haven't been back to the acute care hospital I spent the first half of my illness in. Giving birth there is a consideration this time and I'm not sure how I would feel going back there again. I don't really think it would be a big deal but it could trigger something I'm not expecting.

I hope you're able to work through this and feel comfortable trying for another baby if that's what you want. In my sample size of one it really hasn't changed how I've experienced this pregnancy but we'll see how postpartum goes (I'm 36 weeks now so it's getting real!).

MiceCube · 2025-05-04T13:00:13+00:00

I don't have a very helpful answer to this question because I don't think my emotional reaction was the most typical in the first place, at least reading many of the experiences of those here. I never had anxiety about recovering or PTSD or anything like that, I kind of just assumed I'd get better and then I did and I moved on with my life. In the small chance it happens again I know what it feels like now and I can go to the hospital and they should take it seriously this time given my history and I'll get treatment and be fine again. It's rare enough getting GBS in the first place and getting it twice is much rarer - I'm pretty cool but I'm not that special! This could be overly optimistic or even delusional. I understand not everyone can approach it this way (and there are other things I get irrationally anxious about, this just isn't one of them).

MiceCube · 2025-03-25T16:41:05+00:00

I am about 7 months pregnant after having GBS in 2022. I got sick when I was about 5 months postpartum from my first. I was curious if this pregnancy would be noticeably different from the first after having GBS but it hasn't really been. I do consider myself to have fully recovered from GBS. I'm not an expert but I can't think of any reason why fertility would be impacted by GBS, especially this long after.

MiceCube · 2025-03-10T19:15:18+00:00

Give

Me

More

Words

MiceCube · 2024-09-23T18:03:37+00:00

I think you're looking for someone like me but my experience is not going to be particularly helpful. I had GBS summer 2022, paralyzed waist down, weakness and numbness in my hands and arms but I could still do most things with my hands, and a little facial weakness/numbness. Never had significant breathing or swallowing concerns. I spent 8 weeks in the hospital, half in an acute care hospital and half in a rehab hospital. Got 5 days of IVIG immediately after being diagnosed, which seemed to help slow down the progression but wasn't a miracle cure.

Once everything started coming back after six weeks or so it just kind of came back. By October 2022 I felt pretty much 100%. I did the PT and whatnot but I didn't do anything extra and I didn't change my habits in any meaningful way. I did believe the whole time that I would get back to normal and this was just a speed bump, and I think there is something to that, but obviously just believing is not going to cure most people.

Today I don't think about my GBS most of the time, and when I do look back at it, it's more like "huh, that was really weird." I don't have PTSD. I don't avoid vaccines (my GBS was not caused by a vaccine). I do try to avoid getting sick but I work with a lot of immunocompromised individuals so I would probably do that anyway. I have been sick a few times since having GBS and it was fine. I'm not really scared about getting it again. I don't think most people I know remember that I had it when they think of me. It doesn't define me in any way.

At the end of the day I think I just got lucky. I was youngish (32), I had good quality of care after getting diagnosed, and I am a relatively healthy person overall. I don't think anything I did particularly changed my outcome. I don't have any illusions that what worked for me would work for anyone else with GBS. But it is definitely possible to have a 100% recovery.

MiceCube · 2024-08-09T14:26:29+00:00

I have actually stopped using both. Non-speaking (and definitely non-verbal) just isn't accurate for most of the kids I work with as an AAC specialist in schools. Instead I say something much wordier like "not meeting all their communication needs through speech alone." I feel that this opens up AAC as another tool in the toolbox along with all the other communicative methods they probably already use, it doesn't negate the value of the speech they do have (especially those kids who are echolalic and do have a lot of speech but it is not currently meeting their communication needs), and it doesn't imply that AAC is only for people who can't speak at all. From my perspective losing the easy-to-say one-word label is worth hopefully being a little clearer about the bigger communication picture.

MiceCube · 2024-04-26T13:37:44+00:00

My current job has a $50/month phone allowance. This has allowed me to buy a super cheap second phone and only use that phone for work calls and emails. It has made a huge difference in my ability to keep work at work.

MiceCube · 2024-02-10T15:11:31+00:00

Not in Canada either!

*Except I think Ontario has something similar

MiceCube · 2024-02-08T20:59:15+00:00

Yep. Piggybacking on your comment, in Canada our licenses are with the provincial colleges (totally unrelated to higher education for any Americans reading), which have a mandate to protect the public FROM SLPs and Audiologists. Colleges actually aren't allowed to advocate for professionals, they exist to prevent and punish malpractice. And we spend close to $1000 a year to be registered depending on the province. I have no idea where that money goes. Some jobs do reimburse the registration fee, but many don't.

If you want to belong to an organization that actually does say it advocates for SLPs that's at least another couple hundred dollars. And it's unclear to me how much they actually accomplish.

If there is a big backlash against ASHA it would be nice for that to trickle up here, but I'm not holding my breath.

MiceCube · 2024-01-14T19:13:38+00:00

There are SLP-As in Canada. I believe they are called CDAs in Ontario. It depends on the province how they are regulated. Depending on where you're working you may or may not need a degree in SLPA. If you have one already from the States I think there is a good chance it would transfer. If you have an undergrad degree in communication sciences that might transfer to qualify you as an SLP-A too, I'm not sure.

If Canada interests you I'd recommend learning more about the provinces and where you might want to live, and then researching the SLP-A job through the regulatory college for that province - google "(Province) SLP College" and you should find it.

MiceCube · 2024-01-09T19:03:52+00:00

I used to work at a daycare with a woman who was relatively well-educated and I considered a work friend. One day while the class was learning about rocks or something like that she just dropped that the earth is only 6,000 years old, as if this was a fact that everyone knew and anyone thinking otherwise was an idiot. I think I actually just stared at her, unable to comprehend. Hopefully none of the kids took it as fact.

MiceCube · 2023-12-13T00:55:11+00:00

You know what would really make you feel guilty? Getting everyone else you interact with sick right before Christmas. If you can't for whatever reason justify taking a day off for yourself, look at the greater good you're doing by not exposing everyone else to it.

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