With Parkinson’s, Botox isn’t a walk in the park, but it helps me walk
Yes, the injections are painful, but I'm grateful for the relief they provide me
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.
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.
About the Author
Taylor Lucas
What kind of doctor gives botox for parkinsons I would love to get them
Christine Scheer
Hi Taylor,
Ask your neurologist if there is a doctor in your area that can help you.
Thanks for reading!
Christine
Brian Campkin
Thanks for sharing your story with us Christine. I am a PwP and was diagnosed in Dec of 2018. Although I have not had to have a relationship with Botox yet as a peer to peer mentor for Parkinson's Canada, stories like yours provide me an opportunity to learn more about Parkinson's and share with my circle. Cheers, Brian from Whitby, Ontario Candaa
Christine Scheer
Hi Brian,
Thanks for your comment. I didn't know Parkinson's Canada had a mentorship program! That's a wonderful thing to get involved with.
All my best,
Christine
Esme
Thank you for sharing your journey. My mom has PD and her tremors have started to worsen. We’ve asked several doctors and even dermatologists if they would treat her left arm tremors with Botox. The dermatologists all say no and the neurologists have said she’s not as bad to merit Botox injections. We disagree, her tremors have already prevented her from doing normal household tasks. Any advise on how to find a doctor that would inject Botox to PD patients? Also, when you say you experienced muscle weakness, was that still the case when going to the second doctor (with the small needles)?
Christine Scheer
Hi Esme,
I only had botox in my arm once because I didn't like it at all! I had to use my right arm to lift up my left arm, not fun at all. Honestly, if the doctors don't think your mom is a good candidate for Botox, I'd probably listen. Good for you for advocating for her, though!
All my best,
Christine
Jean Todd
I also get Botox injections for my left foot and they do help a lot but the injection is in my shin not my foot. It is extremely painful and now I’m wondering why not inject into my foot? Do you have any idea why the location is different?
Christine Scheer
Hi Jean, I do get a needle in my shin as well as the multitude in my foot. I guess that our pain/discomfort is unique to each of us, so they must customize what they do.
Thanks for reading,
Christine
Clive
Good day all.
I too have a botox injection into my neck muscles every three month and it does help tremendously.
Christine, regarding the botox into your leg to stop your toes from curling, I am a scuba dive master and, yea I know this may sound weird but your "toes curling" sounds exactly like what a number of my 'pupils' experience at times.
And as you can imagine your toes curling under water can be incredibly dangerous.
It sounds like muscle cramps. As you know the botox will obviously "deaden" the muscles, that is why it helps.
Before your next botox appointment please try taking potassium pills etc, every day for a few days, initially and them every few days.
Forget about the rubbish you hear about lack of salt being the cause, it is actually the lack of potassium.
Bananas, besides being gram for gram one of the best foods, are also a great source of potassium.
(People can also have a similar problem at times in your hands and thighs.)
It can't do any harm
Christine Scheer
Hi Clive, that is such an interesting idea! I googled Potassium and Parkinson's disease, and you might be on to something. Thanks for your thoughtful suggestion.
Christine
Edward Fritz
I’ve had nasty pain in my left foot for years. We tried the botox a couple of times - the second time using the needle with the “ gieger counter.” He warned me that the injections would be painful, then seemed amazed that I didn’t even flinch. Sometimes it’s the technique of the doctor giving the injections, and others it’s just the difference between patients.
In both instances it did not help at all, and the second time actually made it worse.
Apparently I’m just going to have to learn to live with it.