Botox for Parkinson’s disease symptoms? It’s not just for wrinkles.

If you thought Botox (onabotulinumtoxinA) was only used to reduce wrinkles and fine lines caused by aging, think again! It’s also used to treat many types of medical conditions, including the symptoms of Parkinson’s disease.

I now have firsthand experience with using Botox for Parkinson’s symptoms. My husband, Arman, who was diagnosed at age 38 in 2009, was encouraged to try it by his team of specialists (neurologist, physical therapist, and occupational therapist), hoping it’d bring about temporary relief.

For Arman, stiffness and rigidity seem to be two of the most difficult parts of Parkinson’s. It’s become nearly impossible for him to stand up straight and lift his head, which is not only uncomfortable and even painful, but also frustrating and even dangerous. When we’re out and about, I have to point out every step or uneven surface ahead of us so he won’t fall, because he can only see the ground directly below him. Imagine walking with your head all the way down to your chest.

Our movement disorder team submitted the necessary paperwork for Botox to our health insurance provider, and a few weeks later, we were happy to hear we got the go-ahead for this treatment, which has been approved by the U.S. Food and Drug Administration for Parkinson’s symptoms.

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We then had to wait about a month for his scheduled appointment, which had Arman questioning if we should even try this. As a physician himself, it can be hard for him to allow his specialists to take the reins of his care. Before having deep brain stimulation surgery, for example, he struggled with the decision for many years.

The appointment day finally arrived, and we decided to give Botox a try; what did we have to lose? As the neurology fellow explained, the treatment would only last three months. The one negative side effect was that it may affect his ability to swallow, which seemed a little scary to us. But we figured that if he didn’t respond well to the treatment, at least it wouldn’t last forever. (I then began to ponder how long a person can go without swallowing.)

When we arrived to get the injections on April 20, the fellow and our movement disorder specialist studied Arman’s posture, gait, balance, and head tilt (to the left) for around 20 minutes. They then planned where they’d inject the Botox and what quantity to use in each area.

Of course, Arman being Arman, he gave input on exactly how he thought it should be done, and they readjusted their plan for his comfort. They determined that injections in his neck and abdomen would provide the most benefit. They also explained that this treatment was a “trial and error” type, which would be adjusted every three months, depending on his response.

The first step was to turn off his deep brain stimulator. It’s always painful for me to see him without the assistance of this device; I have to close my eyes and breathe through it. If I see him in any discomfort, I become physically ill. Seeing his legs start to tremble and his toes curl up in his shoes is enough to take me to a bad place, so I closed my eyes and hoped for the best.

They used electromyography (EMG) to determine the injections’ locations. Those shots took about 25 minutes to complete, using EMG guidance. For me, with my face in my hands, it felt like a lifetime. Arman, however, is a trooper and handled it like the champion he always is. It’s funny because he’s my rock at times when it should be the other way around.

It’ll be at least two weeks before he notices any changes, so we’re still waiting to see some benefit from the Botox procedure. We’re hopeful that this will help him, but also realistic that it may not.

It’s exciting that we have options for treatments available to us, and we feel fortunate to be able to give this one a try. As my daughter says, “Throw it at the wall and see if it sticks!”

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.