Giving Botox another try to relieve Parkinson’s symptoms

My husband, Arman, has been dealing with a number of symptoms in his head, neck, and back due to his battle with Parkinson’s disease. These have included a stooped posture, a bent spine (called camptocormia), a drooped head, and a bend in his trunk (called Pisa syndrome). He’s also had more falls, which I believe are related to these issues.

Since his diagnosis of early-onset Parkinson’s disease in 2009, we have tried many different treatments in an attempt to reduce some of these problematic symptoms. Arman underwent deep brain stimulation surgery in 2017, and we continue pursuing the optimal settings for his stimulator.

We’ve tried both increasing and decreasing his medication, changing brands, and with Duopa (carbidopa and levodopa), changing how it is delivered.

He has also worked with physical and occupational therapists over the years. We feel fortunate that a lot of research is being done to help alleviate the debilitating symptoms of Parkinson’s disease.

Our movement disorder specialist suggested another treatment option: Botox (onabotulinumtoxinA) injections. We decided it would be worth trying since Arman’s health insurance covered it.

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Giving Botox a try

Last May, I wrote about our first experience with Botox. The initial set of injections started at the lowest possible dose to ensure that Arman would have no adverse reactions. Fortunately, the only uncomfortable side effect was a small amount of pain in his neck when his medication was taking effect. Because the dose was so low, he didn’t notice an improvement in his ability to stand up straighter or to hold up his head, or in the tilt of his head.

We decided to try it again, even though we didn’t see much benefit in the first round. We felt optimistic and hoped a higher dose might relieve some symptoms. He had a second Botox injection about 90 days after the first treatment.

For the second dose, Arman’s neurologist made a few modifications in the location of the injections. He had several in his neck and a few in his abdominal area.

Unfortunately, there was a mix-up with the insurance and he was only approved for the same low dose, not a higher one. We felt a bit discouraged, but hoped for the best.

After the second round of injections, Arman still didn’t notice an improvement in his posture or with his head and neck issues. We were disappointed, but we were not expecting a drastic change because he had only received another low dose.

We continue to keep an open mind about new and exciting treatments that come our way. In the meantime, we plan to give Botox a third try. As they say, the third time is a charm, right?

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.