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Chronic Triggers, Mild Tremor Video and Total Dependence

Day 3 · 3:01:09 · Dean Allison · Dawood Al-Janaby · Myriam Bohémier · Carole Avoine

  • 🚫 Carbs, cold, sleep loss and stress still ignite whole-body nerve torture; walking a block costs days of payback.
  • 🎥 Hospital video of a “mild friendly” full-body tremor episode ran for 3.5 years with zero control.
  • 👨‍👦 He cannot live independently; family must help with stairs and washroom in bad episodes.

Ongoing disability captured on video and daily life limits.

← ER Ordeal, Normal Labs and Quality-of-Life Collapse | Cystic Masses, Plantar Fasciitis and Unemployable Future →

Transcript

Dean Allison · 3:01:09

And even today, like, so you've got, you've got to be careful of triggers or you get this nerve pain over your whole body. And it can be like, as you described, torture. Today you have to avoid carbohydrates, you have to avoid cold weather. Welcome to Canada. Lack of sleep and stress. So likely even coming here today is going to be a trigger for you.

Dawood Al-Janaby · 3:01:35

But I do have it today. That's why you see even— and by the way, even affect the way you talk, like, you know, like you can't remember words, you cannot make sentences. So it's— you feel like even when I talk, it's like there's all the time. Now it's a little bit better, but it used to be a severe and a very severe version, like when When I used to be in university, like in my first year, I cannot do presentations. No, no matter what, you know. So nobody knows what it is. At that time, no diagnosis, you know. But the interesting thing was like that mass here, it's like the same pain. I start to feel it right beside it, you know. And then I went to the family doctor asking him like, hey, I feel some, something in my hand in here, like a severe something major coming, like happening at this, at this spot.

Dawood Al-Janaby · 3:02:35

He's like, I don't know, let's do some another ultrasound. We do the ultrasound clear.

Dean Allison · 3:02:40

So I'm just going to focus here because I want to get to a video that you sent me.

Speaker D · 3:02:43

Yes.

Dean Allison · 3:02:44

But I just want to make clear, like, still to this day, you've got this Oh yes, never resolved. And the fatigue you've got today, the exhaustion, it's the same. You really, you can't walk a block. You'd be in pain for days.

Dawood Al-Janaby · 3:02:58

If I do any physical activity, I somehow it triggers a punishment, you know, like for next 3 or 4 days. You cannot have much of physical activity as much as walking, you know, because for some reason it triggers the pain, right? It triggers a very bad kind of a pain where you cannot even sleep, you cannot, you know, function in any way or matter. You can't study, you can't do anything. You will be just sitting waiting for this thing to go.

Dean Allison · 3:03:38

And another thing that happened is you get these involuntary tremors.

Dawood Al-Janaby · 3:03:41

They Yeah.

Dean Allison · 3:03:42

You'd start to shake and you couldn't stop.

Dawood Al-Janaby · 3:03:44

Yes.

Dean Allison · 3:03:44

And this went on for at least 3 and a half years.

Dawood Al-Janaby · 3:03:48

Yes.

Dean Allison · 3:03:49

And now, so we're gonna play a video that you sent me of you. So you're in the hospital and you're having one of these involuntary shaking episodes. And David, can we play this video twice? Because it's not a long video and—.

Dawood Al-Janaby · 3:04:06

But that was a mild one. Like, this is like a very friendly version of it.

Dean Allison · 3:04:11

Okay. So when we're watching this, we need to understand we are watching a mild, friendly shaking episode. David, can we play that?

Speaker G · 3:04:22

Sure.

Dean Allison · 3:04:22

Deep breath.

Dean Allison · 3:04:25

Yeah. And I imagine when your muscles are contracting without control, That they get very sore.

Myriam Bohémier · 3:04:36

Yes.

Dean Allison · 3:04:37

Okay. We'll just play that again because it's short and I got more out of it watching it twice. Deep breath. Okay.

Carole Avoine · 3:05:22

All right.

Dean Allison · 3:05:22

Thank you so much. You're welcome. And so that's a mild version. And this, this would be going on for 3 and a half years over your entire body. The entire body. And zero, zero control over any of this.

Myriam Bohémier · 3:05:45

No.

Dawood Al-Janaby · 3:05:46

I still sort of remember, you know, like at the beginning, like to take a 5-step stairs. You cannot do that. I have to like by four, by hands and my legs, like, you know, you have to crawl and you can't do this. I reached some points where my brother and my father had to take me to the washroom. I cannot even go, you know. So like it has that kind of a nature of episodic where there's some period where you cannot do anything, you know, and then some period you have you know, kind of, I wouldn't say normal. It's not normal, but, you know, something that you could tolerate where you could sleep, you know. But yeah, it never, never, never, you know, never like the pain never go. This, the shaking thing, the tremors went away. So I'm very happy about it. I think I was lucky.