Dystonia is a neurological disorder classified as a movement disorder. It falls within the Parkinson’s disease tremor continuum. More than 350,000 people in North America have the disease.
Symptoms of dystonia slowly developed over time. I began experiencing abnormal movements of the neck, facial spasms, blepharospasms and walking difficulties, along with dysphonia, which gave me a light breathy voice quality.
I began treatment with botulinum toxin (Botox A) in 1995. Today, I carry the diagnosis of primary dystonia, dysphonia and torticollis — three distinct forms of dystonia. Botulinum toxins temporarily block nerve impulses that induce constant muscle contractions that cause the signs of dystonia. The toxin is injected every three months. A cure does not exist.
Working as a nurse while having a movement disorder is difficult. I don’t think most people realize how difficult it is to work with a “visible” disease. One can hide diabetes, but one can’t hide tremors, pain, abnormal twitching and posturing. With dystonia, one learns to use “sensory tricks” — body postures that allow one to hide the abnormal movements.
Walking can be tiresome. I walk into walls, cut into corners, and can’t always open or crush medications. It’s difficult to focus on tasks as brain signals are firing to muscles, inducing the abnormal movements. Using two hands at the same time is difficult. Motor coordination is no longer smooth and refined. Despite these few examples, I rarely ask for help from my colleagues.
Patients constantly ask what is wrong with me. At times, I simply say, “a stiff neck." If they question me a bit more, I explain dystonia to them.
I would not be able to continue working if I did not have the support of everyone at work — nursing, medical staff and others. There are high rates of depression, unemployment, isolation and loss associated with dystonia.
I still carry my load of patients. I never take a break, although I do lie down for an hour before the start of the shift. Dystonia eases when you are in the horizontal position.
Being both a patient and a caregiver has brought along other job opportunities: writing books and working as a patient advocate and consultant.
As a nurse and patient, I realized that multidisciplinary care was needed. I would sit for hours waiting for my toxin - like filling your gas tank. I would rarely be listened to as a patient. That’s how I came up with Care for Dystonia, www.care4dystonia.org a nonprofit organization focused on public awareness, patient education and collaboration.
Over time, one learns that quitting is not an option, and whining is annoying. Life goes on, even with dystonia.
I ask:
Is it too much to comprehend
Or ask for
Recognition of disease,
Chronic disease.
Open your eyes
And see.
Don’t become blind to the needs of others.
Look beyond us,
Beyond anyone.
Never say good-bye to dreams.
They keep you going
During tough times.
Hold on to them,
And never let them go.
Keep a memory of them.
Bank upon them during times of need.
Workable Wisdom
· Find others like yourself. It may seem like you are the only nurse with your condition. There is strength — and comfort — in numbers.
· Turn your condition into opportunities. You can be just another person with a disability, or you can be an advocate. Can you write a book? Become a consultant?
· Get on with it. No matter the disability, there is life after disability. The longer you dwell on the things you can no longer do, the longer it will take you to find all the new ones you now can.
Excerpt from a chapter written by Rebecca Serdans, RN, BSN, MSN, ANP,
in Leave No Nurse Behind: Nurses working with disAbilities by Donna Maheady, EdD, ARNP.
Readers: Please share your thoughts and suggestions as to how we can work toward inclusion of more nurses with disabilities.
About the Author: Donna Maheady, Ed.D., ARNP is a pediatric nurse practitioner and nursing care consultant. She is a strong advocate for inclusion of nurses with disabilities in nursing practice, and has taught nursing for over 20 years and worked with nursing students with a wide range of disabilities. Donna is the founder of www.ExceptionalNurse.com, a nonprofit resource network for nurses and nursing students with disabilities.
Click here to read more on Donna Maheady.
Photo Courtesy: ExceptionalNurse.com
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