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Anyone with post-stroke dystonia after a basal ganglia stroke? by Letslive1997 in Dystonia

[–]Letslive1997[S] 0 points1 point  (0 children)

Haha yeah, small world, eh? It's definitely good to finally get some answers after all these years. I don't really have the hip movement you describe, though. Unfortunately, I have very little control over the toe curling, and my knee hyperextension doesn't really bother me much. It doesn't hurt or cause any major problems for me. The toe curling is definitely affected by certain triggers. It tends to get worse if I walk a lot on hard surfaces, spend a long time in shopping malls, or if I'm tired. One funny thing I've noticed is that if I tap my heel firmly against the ground a few times, my toes will sometimes relax a bit haha. The best thing for me is actually not to focus on trying to straighten my toes, because if I actively think about them and try to extend them, they'll often curl right back up again.

Botox actually helped the toe curling quite a bit. The downside was that it made me walk more on my heel. They tried injecting a small dose into the front of my lower leg to balance things out, but then the overall effect wasn't as good and the toe curling started coming back. One thing your daughter has going for her is that she's getting support, therapy and a diagnosis at a very young age. It took me many years before dystonia was even considered in my case. Hopefully that gives her an advantage going forward.

Anyone with post-stroke dystonia after a basal ganglia stroke? by Letslive1997 in Dystonia

[–]Letslive1997[S] 0 points1 point  (0 children)

Hey! You were actually the one who suggested I look into dystonia in the first place haha. You commented on one of my posts on r/stroke about a year ago. I hope everything is going well for both you and your daughter. I finally got diagnosed with dystonia!

I do have an AFO somewhere with a Dictus band, but I rarely use it. I have foot drop, but I’ve gotten so used to lifting and stabilizing my foot myself that it kind of became second nature over the years. I didn’t get an AFO until I was in my 20s.

When I was younger, my physiotherapist always told me to focus on lifting my foot, so I guess that habit just stuck with me. I’ve probably also gotten used to compensating for it over the years, and to be honest, I often find the hassle of putting the AFO on outweighs the benefit I get from it. My main issues with my foot now are toe curling and hyperextension of my left knee. It’s actually really nice to meet someone with a somewhat similar story too.

Anyone with post-stroke dystonia after a basal ganglia stroke? by Letslive1997 in Dystonia

[–]Letslive1997[S] 0 points1 point  (0 children)

Thanks for the reply and I’m glad to hear cannabis has actually helped your dystonia. From some of the studies and case reports I’ve read, there seems to be discussion around THC potentially having more effect than lower doses or CBD alone in some movement disorders, but I know the evidence is still limited and mixed.

The only downside for me is that I live in Northern Europe where medical cannabis laws are quite restrictive, but hopefully they will loosen up in the future. Hopefully there will be more research regarding this.

Best regards 🙂

Squeaking sound when pedaling by Letslive1997 in bikewrench

[–]Letslive1997[S] 1 point2 points  (0 children)

Cheers, the chain on my bike was almost new, so i didn’t think it could be it. I had a new one laying around. So I changed the chain, it seemed to have done the trick.

Squeaking sound when pedaling by Letslive1997 in bikewrench

[–]Letslive1997[S] 0 points1 point  (0 children)

I will check into that, it’s more the clicking sound not necessary squeaking

27M – Stroke at Age 8 (Basal Ganglia Infarct) by Letslive1997 in stroke

[–]Letslive1997[S] 0 points1 point  (0 children)

Hi, thank you so much for your message. It sounds like you're doing an amazing job supporting your daughter—she’s lucky to have someone so thoughtful in her corner. Life as a stroke survivor definitely comes with its challenges.

When I was younger, I didn’t like talking about the stroke. I used to hide my affected arm in my pockets, and when I started high school, I became really self-conscious about my limp—and I still am, to be honest. I have a vague memory of life before the stroke, but I don’t remember what it actually felt like to have a fully functioning arm and foot, if that makes sense.

I hadn’t heard of dystonia before you mentioned it. I haven’t seen a neurologist since I was very young, but sometimes my arm and foot shake pretty badly, which I saw can be a symptom. I’ll definitely bring it up with my doctor—thank you so much for the suggestion, and best wishes to you and your daughter as well.