A friend of mine has a two year old with a recent diagnosis of autism spectrum disorder. I asked her how it felt to have her child labeled autistic. Was it scary? Was it a relief to have a name attached to his symptoms? Did it help with funding for services? Her answer was “yes” to all of those questions. A medical diagnosis and its associated label can often bring a mixed bag of feelings. For some, it may bring relief that the symptoms have been classified and referral for appropriate services underway. For others, a definitive diagnosis may bring some fear that the label will stick, and that others will now view us differently.
Peeling of the labels
We all accrue many labels over the course of a lifetime, and as a society, we have gradually replaced demeaning labels such as “crippled” with more acceptable labels such as “disabled”. When a label refers to a group of people, such as: “Parkies” or “Parkinsonians,” it may represent a group you have found yourself a member of by default or diagnosis. The labeling may cause others to overly focus on the visible manifestation of the disease while failing to connect to you, personally.
When meeting a new patient with a medical diagnosis of Parkinson’s disease (PD), I will ask about their medical history and timing of diagnosis, but, as soon as I can, I shift the interview and ask the person about him or herself. Are you working? retired? What did you do for a living? Tell me about your family. Rarely does anyone’s face light up when talking about their medical diagnosis of PD, but when talking about their career, their family, etc. the person behind the diagnostic label begins to shine. The use of labels when referencing people with Parkinson’s disease has been a pet peeve of mine for quite some time. I hate labels such as “victims,” “sufferers,”, and in fact, I even hate when at a conference individuals with Parkinson’s are referred to as “the patients,” as they are ushered off into a separate room from their spouse or family member. After all, outside of a hospital or medical setting, should any of us be referred to as “patients?”
Perhaps the best course of action, would be to ask the person with Parkinson’s disease, how they would like to be referred to, and if that includes the disease diagnosis at all.
My deceased dear friend, and blogger, Kate Kelsall, wrote a poignant piece on this topic, and stated:
“When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued. Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.”
Every year on April 16, otolaryngologist—head and neck surgeons and other voice professionals worldwide join together to recognize World Voice Day. World Voice Day encourages everyone, young and old, to assess their vocal health and take action to improve or maintain good voice habits. I love the theme of World Voice Day this year. Not only does it ask us to take care of our voices, but, it also asks us to be kind with our voices. This great human gift we possess enables us to use our voice to hurt or heal, to belittle or empower, to discourage or motivate. This month, you will hear lots of people using their voices to raise awareness about Parkinson’s, join them if you can, and use YOUR voice to tell your story and be an inspiration to others.
April is Parkinson’s Awareness Month
What I’ve learned professionally and personally about Parkinson’s disease.
I’m often asked why I am so passionate about working with people with Parkinson’s disease.
April is Parkinson’s awareness month, and there will be numerous walks, talks, webinars, and other events in communities around the world. The Parkinson’s community of patients, care partners, physicians and professionals has grown tremendously in the last 18 years since my own dad, diagnosed with Parkinsonism at the age of 80, passed away.
New medications, surgical interventions, therapies and treatment options have all improved significantly, and information is now accessible 24 hours a day via the internet changing the way we learn and communicate with one another.
But the day to day struggles I witnessed with my dad and my family have not changed all that much, and my desire to ease some of those burdens along with a belief that the ability to speak is among our most precious human rights fuels my passion to educate, motivate, and do what I can to preserve communication for persons with Parkinson’s. The relationship I form with a patient is sometimes intense, and requires a lot of mutual sharing and trust. If open to it, for both the patient and therapist, the relationship formed during therapy encounters can be a vehicle for finding greater meaning or purpose in our lives.
If you are someone with Parkinson’s disease who has not yet been evaluated by a speech-language pathologist, consider adding it to your “to do list.” Speech, voice, and swallowing problems are common symptoms of Parkinson’s disease, and early treatment can reduce Parkinson’s impact on your quality of life.
#UNITED for Parkinson’s is a new awareness campaign, launched by a group of young-onset people with Parkinson’s from across Europe, and PD advocates from around the world are in a race to spread their message.United for Parkinson’s hopes to put pressure on policymakers by highlighting the unheard stories behind the disease, and it is also hoped that – by sharing personal stories – it will tackle common misconceptions about the disease. Learn more about the campaign: https://parkinsonslife.eu/united-for-parkinsons-the-race-is-on/
Free Upcoming Parkinson’s Awareness Events in SW Florida
Saturday April 13, 2019 Parkinson Expo sponsored by Neurochallenge Foundation Manatee Convention Center. This is a free event. To register visit: https://www.parkinsonsneurochallenge.org/expo.html
Saturday April 27, 2019 Parkinson Disease Awareness Month Symposium sponsored by Parkinson’s Disease Treatment Centers of SWFL in partnership with American Foundation for Focal Dystonia Free Event in Lake Suzy, Florida with limited seating. To register, contact Jennifer:
Phone (941) 743-4987 • Fax (941) 743-4486 • firstname.lastname@example.org
Parkinson’s Awareness – Live on Gulf Coast Live Tuesday April 16, 2019 at 1pm
Join: Mary Spremulli,CCC-SLP, Michelle Martin, Program Coordinator, Hope Parkinson Program, Cape Coral, Fl; Carisa Campanella, Program Coordinator, Neurochallenge Foundation, Sarasota, Dr. Ramon Gil, Neurologist. Port Charlotte, Fl., and Gretchen and Michael Church, authors and Parkinson’s advocates, for a Parkinson’s Awareness discussion.
Gulf Coast Live is a live, locally produced, call-in radio show focusing on issues that matter to Southwest Floridians. It’s your chance to share your thoughts and connect to your community, live on the radio, and interact with experts, decision makers and each other via phone calls and social media. Hosted by: Julie Glenn Produced by: Mike Kiniry.
Listen to the live broadcast:https://news.wgcu.org/programs/gulf-coast-live-wgcu
To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.
Mary Spremulli, MA, CCC-SLP