From Actor to Caregiver
To many of you reading this, my mother's experience with upper limb spasticity will be sadly familiar.
I had always known my mother to be a busy bee, full of life and a force of nature – that's who she was. Even in her later years, my mother kept very active – whether it was her regular card games with friends, organizing and participating in events at her synagogue or just even driving around town, doing her daily errands, she was always on the move.
However, things pretty much ground to a halt after she began to experience upper limb spasticity after she had a stroke. Her arm became tight, involuntarily stuck close to her body, which severely limited her ability to get around on her own. Soon her upper limb spasticity became so problematic that my sister and I, as well as her other caregivers, had to help her with the simplest of tasks – tying her shoes, helping her get dressed and eating.
My mother struggled with upper limb spasticity for 10 long years before she passed. Unfortunately, there was so much less known about upper limb spasticity back then. Today, not only do we have a better understanding of upper limb spasticity, we also know more on how to manage the condition.
Sadly, there continues to be low awareness and under-diagnosis of the condition. The problem is that upper limb spasticity can come on months, and sometimes even years after the original injury – sometimes after patients are out of the hospital and are no longer seeing specialists, like neurologists or physiatrists, who see the condition on a regular basis and are specifically trained to manage and treat it.
That's why I chose to become an Ambassador of the “Open Arms” educational campaign. I've joined forces with this incredible team of national patient advocacy groups and Allergan, the maker of BOTOX® (onabotulinumtoxinA), to raise awareness for upper limb spasticity and let people know that upper limb spasticity treatment options are available. Seeing what my mother went through, I feel I owe it to others with the condition to do what I can to help.
One of the first, and most important, steps to take is to talk to a doctor right away. You may then be referred to a doctor specialized in this condition, like a neurologist or physiatrist, who can evaluate your symptoms and develop the appropriate treatment plan.
"Today, not only do we have a better understanding of upper limb spasticity, we also know more on how to manage the condition." -Henry
"Open Arms: Raising Awareness for Upper Limb Spasticity" Educational Campaign Advocacy Partners. Sponsors of the Open Arms educational campaign do not endorse any specific treatment for upper limb spasticity
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BOTOX® is a prescription medicine that is injected into muscles and used to treat increased muscle stiffness in elbow, wrist, and finger muscles with upper limb spasticity in people 18 years and older.
It is not known whether BOTOX® is safe or effective for other types of muscle spasms.
BOTOX® may cause serious side effects that can be life threatening. Call your doctor or get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:
- Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months.
- Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing.
There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat severe underarm sweating, blepharospasm, or strabismus.
The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product.
Serious and or immediate allergic reactions have been reported. These reactions include itchy rash, swelling, and shortness of breath. Tell your doctor or get medical help right away if you experience any such symptoms, further injection of BOTOX® should be discontinued.
Do not take BOTOX® if you: are allergic to any of the ingredients in BOTOX® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® or Dysport®; have a skin infection at the planned injection site.
Tell your doctor about all your muscle or nerve conditions such as amyotrophic lateral sclerosis [ALS or Lou Gehrig's disease], myasthenia gravis or Lambert-Eaton syndrome as you may be at increased risk of serious side effects including severe dysphagia (difficulty swallowing) and respiratory compromise (difficulty breathing) from typical doses of BOTOX®.
Tell your doctor about all your medical conditions, including if you have: plans to have surgery; had surgery on your face; weakness of forehead muscles, such as trouble raising your eyebrows; drooping eyelids; any other abnormal facial change; are pregnant or plan to become pregnant (It is not known if BOTOX® can harm your unborn baby); are breast-feeding or plan to breastfeed (It is not known if BOTOX® passes into breast milk).
Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins and herbal products.
BOTOX® may cause loss of strength or general muscle weakness, or vision problems. If this happens, do not drive a car, operate machinery, or do other dangerous activities.
Other side effects of BOTOX® include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, and eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes.
For more information refer to the Medication Guide or talk with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see full Product Information, including Medication Guide for BOTOX®.