Have you ever wondered what life with a movement disorder is like? I wouldn’t call it debilitating, but I would say it’s certainly annoying. I can only speak from the prospective of having Choreathetoid Cerebral Palsy. I can’t explain what all movement disorders are like. But I will try to portray what an average day is like with my same disorder.
I get up every day, wishing I had the full ability to take care of myself. I can dress myself, but I need assistance with my personal care. I would say I have about sixty percent of my hand function on a good day. On a bad day, well, it’s down to like forty percent. These are estimated figures. I don’t know what the actual figures are mathematically.
Eating and drinking. I can’t feed myself or sip a drink independently at all, which is very frustrating because I would love to go to lunch with friends and talk over coffee. It’s very hard to adjust to a new person feeding me because certain methods make me uncomfortable. It’s also harder for me to drink because I don’t have the ability to drink without chin support.
My movements can affect my ability to communicate. I know what I want to say. It’s just that when I am moving so excessively, I feel like I can’t communicate. I have tried Eyegaze and that didn’t help. As my grandfather would say, I’m a square peg in a round hole. He would argue that occupational therapy was the hardest for me because I didn’t fit in the traditional methods it taught because of my movements. I would always argue that speech therapy was the hardest because I didn’t have great control of my oral muscles.
Walking isn’t that bad. I would say that I have eighty percent of my walking ability. That’s really good because when I walk, I don’t have the world’s greatest balance. My movements aren’t tremors. They are just an inconvenience to life.
How do you help someone with a movement disorder? The short answer is you just have to be patient with them. There are some medications to help them calm down, but that’s a tough question. Movement disorders can be treated with exercise and therapy, but as a caregiver, you just have to be patient with them.