Watch and Learn

Real patients’ stories about living with movement disorders and videos about the XEOMIN® (incobotulinumtoxinA) treatment experience.

Patient Point of View

Hear about treatment with XEOMIN from Noel, an
actual patient who can share his experience with you.

Part 1: Noel’s Diagnosis Watch here

Part 2: Noel’s XEOMIN Experience Watch here

Doctor’s Perspective

Get a doctor’s point of view about his
experience with treating patients with XEOMIN.

Part 1: About XEOMIN Watch here

Part 2: XEOMIN and You Watch here

Jan, 62, cervical dystonia patient

How CD symptoms started
I worked in a doctor’s office and within a 2-week period my head completely pulled over to the righthand side for no apparent reason. It was just stuck there. My general practitioner right away said it was cervical dystonia. But he made me feel like it was all in my head or psychosomatic. He told me to go back into the waiting room and show my mom that I could be okay and that there was nothing he could do for me. So then I went on for several years just struggling with it on my own.

How hard living with CD could be
My head turned purely to the right; I had a lot of trouble bringing it back to center, and a horrible time bringing it to the left. So my life was turned upside down. I was so self-conscious and uncomfortable that I ended up having to leave my job. I would date and be teased about it. It really destroyed my self-esteem. I felt like a freak, it was so obvious. And it also started to restrict me. There was no way I could ride a bike, read, walk, drive, and eat without it being extremely difficult.

I was sort of fortunate in that I didn’t have excruciating pain, but it is the pulling feeling, twisting motion that you’re constantly fighting. It becomes exhausting, and after a while you pretty much just have an ache all the time. Even if I were to let my head go where it wanted to go, it was still such an abnormal position. Being in that abnormal position long enough, you’re going to be really uncomfortable.

How XEOMIN treatment began
I wasn’t treated for many years before XEOMIN was introduced. Instead I tried surgical options, nerve surgeries. They worked for a while, but about 4 years ago my symptoms started returning and it was time to do something else. I was the one who mentioned XEOMIN to my neurologist. He said, ‘Sure, we will give it a try.’

How XEOMIN has helped me
After the first set of injections it did start to help. And it still helps now. Without XEOMIN, I would be extremely uncomfortable and my head would be falling down toward my shoulder. It would be a real struggle.

There has been definite improvement. When I am on treatment with XEOMIN, it relieves some of the pulling pain and tension. Without as much pain and tension, I can focus more attention on other things in life. For example, at concerts (I love music), instead of sitting with my chin on my hand and just focusing on trying to hold up my head, now I can pay better attention to the music. I feel it’s important to share my story so people know they are not alone. I was personally inspired by a quote from Michal J. Fox that says, “Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way to go through it.” I hope my story can help others the way that his words helped me. After all, we are all in this together.

NOTE: Individual results may vary.


Dona, 59, blepharospasm patient

How blepharospasm symptoms started
I was working at my job at the time. It was in an office and it felt like someone threw a light switch and my eye started to spasm and was blinking really bad and I realized I just couldn’t control it. That’s when the journey started.

How hard living with blepharospasm could be
The symptoms before treatment were a lot of facial twitching, which I thought maybe was a tic. I lost control of my eye movement in both eyes so I had to stop driving and working. My eyes became very sensitive to light, sunlight, any kind of hard lighting. It became worse and worse, I kept thinking this has got to go away, this can’t stay this way for the rest of my life, something is seriously wrong. And there is pain. It’s like there is always sand in my eyes. I don’t cry like a normal person, my eyes don’t shed tears. So when I actually do cry it is very painful, my eyes are always very dry.

How diagnosis happened and XEOMIN treatment began
I began seeing many different doctors and not really getting answers. I realized I had to be my own advocate. I knew that if I was going to have this disorder I wasn’t just going to settle. I can’t shut myself away. I can’t let this take over my life. I run a nonprofit, a store, and I try to keep really busy.

Finally, after 2 years, I got diagnosed by a neurologist. At first I was on another neurotoxin, but when XEOMIN came out, I wanted to try it.

How XEOMIN has helped me
It helped me. I can keep my eyes open right now, where before I had no control… to have to keep trying to keep my eyes open was exhausting. Now I have better control.

Now that I am on XEOMIN, I have less discomfort at work. Thankfully, because I have my own business, a nonprofit, I can make my own hours, which is helpful when you have blepharospasm. I can be there in the morning when my eyes are healthy, or I can be there in the evening after the store closes. I have relief from my blepharospasm symptoms now and am helping other people. I feel that I am giving something back. Also, with treatment and my e-reader, I can read without straining as hard to keep my eyes open. So I have sort of defined a new normal for my life. There are still things I used to do that I can’t now, but at least I am not letting my condition define me.

Now that I am in more control of my eyes, I am able to do some of the things I had not been able to do because of my blepharospasm.

NOTE: Individual results may vary.


patient_profile_ruben

Ruben, 40, upper limb spasticity patient

I had a stroke and that was several years ago. After three months, I started having spasticity. Like on my hand. Right now I experience a lot of body tightening of the muscles and spasms in my right arm. It affects movement and stretching, all those things.

But I am still very independent. I live by myself. I can do pretty much anything. It just takes longer. Some of the things are more challenging than others. Some things, like tucking in my shirt, take longer. The hard part is that I haven’t been able to work. I was a mechanical engineer. Hydraulics, heavy equipment. All the tools are heavy and limit me.

I am always hoping for more treatment options. If I could gain more flexibility then maybe life would be easier and I would maybe even be able to go back to work. Hopefully, I could get back to doing more of the things that I did before.