With Parkinson’s, Botox isn’t a walk in the park, but it helps me walk

Note: This column describes the author’s own experiences with Botox. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

The best way I can describe my relationship with Botox (onabotulinumtoxinA) is love-hate. I love the results, but hate the process.

The first time I heard about Botox as an aid for people with Parkinson’s disease was at a support group meeting about a year after I was diagnosed with Parkinson’s. It was the first such meeting I’d attended, so it was a flurry of new faces, names, and information.

Two of the people I met on that Saturday afternoon were sisters; one of them had Parkinson’s, and the other was her care partner. They had a great sense of humor. They asked me what my symptoms were, and when I told them about my stiff and painful shoulders and neck, the sister with Parkinson’s told me she had the same issue.

“Have you ever had Botox for that?” she asked me.

“Um, no. How does it work, and is it painful?” I replied.

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The two of them then described how the one sister would get several injections in her neck and shoulders every few months. That didn’t sound like fun, but they told me it was a huge pain relief and made a dramatic difference in her quality of life.

I asked again, “Was it painful to get so many needles?”

They looked at each other, then at me, and said, “No more painful than the ones in your face!” And then they broke into hysterical laughter.

My experience

I now get Botox in my left foot every three months to stop my toes from curling. Over the years, I’ve had Botox in my neck, shoulder, arm, and leg. Whenever I have a new doctor, I tell that funny story of the two sisters.

Botox has saved me from a lot of grief and pain. It takes about three days after the shot to get into my system, and then maybe a week or so to see a difference. Sometimes it works a little too well, such as when I got it in my left arm to help suppress tremors. Yes, my tremors dissipated, but after three days, I could barely lift my arm, and by the end of three months, I’d lost a fair amount of strength.

Since boxing was my favorite activity, I didn’t like that experience at all. Punching a bag is hard when you can barely lift your arm. Needless to say, I didn’t do that again.

After my deep brain stimulation surgery in 2021, I switched Botox doctors.

The reason I switched doctors was because they used different delivery methods. Even though I liked the first doctor, he used a needle attached to a machine that made a noise similar to what I imagine a Geiger counter sounds like. The machine got noisier and faster when the needle was inserted into the muscle with the tremor. That noise stressed me out and made my tremors more violent. In another concern, the machine needles must be larger than the others I’d use.

So I switched doctors and have been going every three months for a couple of years now. This new doctor uses very small, fine needles, so theoretically, it shouldn’t hurt as much. I appreciate the relief that Botox brings me, but yes, getting about a dozen needles in the top and bottom of my foot does still hurt, no matter how you look at it.

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.