What is Dystonia? It is a neurological disorder who likes to ride with Parkinson’s disease,m in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures (compliments of Wikipedia). Why do I consider it to be a monster? Well as you can see by the video, it makes my foot contract into an awful “Exorcist-like” position, and yes, it hurts! The only thing missing is the projectile vomiting and a priest standing over me saying “The power of Christ compels you”.
I had a long evening of dealing with this monster. For no reason at all, my medications were not working; guess I didn’t get the memo they were taking the night off. So this means that it is almost 1am, and I am still trying to get my muscles to calm down. This is a part of Parkinson’s disease for me. What better way to pass the time then to make a video blog!
At the end of the video, you see the transformation of my foot into the monster Godzilla. I sometimes wonder if my evil creature is just misunderstood. Godzilla was created by nuclear detonations which morphed him into a destructive killing machine, but maybe he just had a really bad cramp in his foot. Maybe he just needed a hug. Maybe I need to go to bed…..
My good right foot does this every morning with in 1 minute of becoming awake and goes away after the dopamine medication starts working. However now by bad left side seams to mimic the Dystonia when it is happening to the right side thank goodness this only last from any where from 10 to 20 minutes long. At certain times I will have bend back the the right toes with my right hand for a few minutes until the medication kicks in. I suspect it has some to with stress or anxiety because right after I wake I start to self stressing and thinking about what I want to get done that morning or day.
That’s exactly what my right foot does with my Dystonia and yes it is painful and makes you walk on the outside of your foot! OMG! I tried Botox and it didn’t work. I’m only 39 and trying to do fun things and keep up with my almost 4 yo daughter and this seems to always get in the way! Either I get anxious and that brings it on or I get the Dystonia just because and then the anxiety comes with trying to get it to work out! I tend to have it at some level upon 1st waking up until my Rytary kicks in and then it could happen again at any point throughout the day, typically comes on around 330/400pm and again in the evening close to bedtime. I very rarely have a day without a big flare up at some point or several times during the day….
You are SO not alone! My hotthubby Dan’s PD has him doing the Godzilla often in the middle of the night too! Thanks for posting your experience. I am going to show him your blog. He has many loooong nights when his meds act the same as you described.
Thank you for posting a comment. I love your blog! I hope Godzilla gave you hotthubby a break last night! Thankfully, I was able to get some rest. Your husband is very fortunate to have you!
Same thing happens to me,,,especially when nervous. Keep smiling.
Sucks huh?! It is kind of weird, but I am glad to know I am not the only crazy person that deals with this. Thank you for sharing!
You’re so funny! Hope the monster left you alone and let you get some sleep.
It was true! The monster just needed a hug! He left me alone around 4am! Good riddance!