Wednesday, February 22, 2017

Research project to address adults with autism: Nurse with autism on the research team!

Dr. Teal Benevides
On February 2, 2017, Danielle Harris, Senior Media Relations Coordinator at Augusta University announced the news of an exciting research project.

Research to address the needs of autistic adults remains relatively unchartered territory, but Augusta University Occupational Therapist Teal Benevides hopes to shed light on this population’s critical needs in her latest project “Priority Setting to Improve Health Outcomes: Autistic Adults and Other Stakeholders Engage Together.”

The prevalence of autism spectrum disorders has increased exponentially in the past decade. Although extensive resources are provided to support children with autism, adults with autism are at increased risk for a variety of chronic health conditions,” Benevides said. “Little is being done to address the health needs that are important to this group and our team and I are working hard to change that.”

For this project, Benevides will be working with a team of critically-acclaimed partners such as Autism Speaks board member and Adelphi University professor of special education Dr. Stephen Shore and Global Autism Consulting Organization founder Anita Lesko, a Columbia University graduate and certified registered nurse anesthetist. In addition to being scholars, Shore and Lesko bring a special perspective to the project as they both are adults with autism.


Anita Lesko, CRNA

Read more about this exciting project at:
http://jagwire.augusta.edu/archives/40792



Donna

Monday, February 13, 2017

Permanent Hearing Loss as a Mom and Nurse: What do I do about…..??




      
       My name is Sarah and I am now 41 years old. I lost a large percentage of my hearing about 3 years ago, suddenly, with no definitive reason.  wear bilateral hearing aids and have severe tinnitus that keeps me from ever having a moment of quiet...EVER.  That in itself is enough to make you feel like you are losing your mind. Constant high pitched, loud ringing. 

      It takes so much brainpower and patience to filter through what I think I hear, the context, read lips and compile a thought that seems to make sense. I get it wrong A LOT even with the hearing aids in. I laugh at myself most of the time, like the time my husband and I were at an outdoor orchestra concert.  He asked me if the piece was from Mozart.  I was shocked and offended and answered a stern, “NO, I ABSOLUTELY DID NOT FART!” (We do not even use that word; we are fancy, high-class people who say, “toot”)! There are plenty of funny times like that but I want to speak a bit to the not so funny times.

           I am a registered nurse. I took a few years away from my career to have three beautiful, most-of-the-time charming and delightful children.   It was always in our life “plan” (ha-ha) that I would go back to work.  After the birth of our youngest son, my hearing took a sudden decline.  I went to the ENT with the thought that I had ear infections or maybe needed tubes. Nothing of the sort…..failed hearing tests, maybe otosclerosis, and sent to a surgeon for possible stapes transplants. 

      As I meet with the specialist, my calendar in hand ready to schedule my surgery, I was told, “Sorry to tell you this but you have significant nerve damage, need bilateral hearing aides, loss is progressive and irreversible and you are not a surgical candidate”.  I held back the tears of shock while I attempted to ask some questions.  

      But, what do I do about my kids?  They are still so young.  My husband is a doctor; he works a lot including night shifts.  How will I keep my kids safe crossing the road if I do not hear the cars or hear them cry out at night (cannot wear hearing aides while you sleep) or struggling in the pool?  I do not hear the doors in my house open even with a door alarm, much less hear someone trying to come in and hurt or steal from us. 

      I have worried and prayed… please maintain enough hearing until my kids are not as dependent on me for their safety.   I have been able to get by on learning the feeling and sounds of each child’s footsteps, reading lips, strengthening other senses, and depending on the other members in our house to hear and translate for me. And, no more night shifts for hubby! 

     And what do I do about my nursing career? have practiced nursing in many areas, but my true love and heart goes into Cardiac Intensive Care and Hospice nursing. In one area, you do all you can to “save” your patient and in the other you do everything you can to ease their passing.  What is similar is the opportunity to intimately know your patients and their family; their story, both medically and personally, their habits, likes, dislikes, the special way their heart beats, the way they inhale, handle pain, medicines, or the change in their vital signs during a bed bath. 

     I cannot hear my patient’s lung or heart sounds, call bells or questions anymore.  Amplified stethoscopes are helpful but I have such loud tinnitus, that I cannot hear over the noise. How would I manage in an emergency? How could I remove hearing aids to listen with the stethoscope, and then replace the hearing aids to hear questions and orders? I could use an electronic stethoscope, but I personally do not feel safe as a cardiac ICU nurse without my own “ears”.  I was/ am afraid of missing something with patients who are so fragile. I realized that I would not feel comfortable or as competent at the bedside as I had before.

      I heard many "reassuring" comments.  You are lucky your husband is a doctor and you do not need to work, many people have it worse, your career should not define you, etc.  Here is the thing; I went into nursing because it DOES define me.  I am a caregiver, a nurturer. I am smart, witty, and work well to comfort others.  I can think fast in an emergency, see concern on people's faces, and translate for patients and families the physician speak. I AM A NURSE in my heart and soul.  So what do I do about…???….I grieve, get mad and frustrated, bargain, beg, pray and cry a lot.

    Then, I put on my big girl panties and went back to school for medical documentation, billing and coding.  I took and passed my CCS exam; I opened myself to finding another passion. 

      Writing fell into my lap and I love it!  I will never do or hear many things again, but I am grateful for what I have.  There is so much more to who I am now because of all of the “what abouts…?”.  

I am a nurse and the good I do in the world stems from that part of my heart.


       This is my story.  It by no means indicates that nurses cannot practice bedside care and do it well with hearing loss. The newest technology and hearing assistance devices can bridge the hearing loss gap to providing care.   Trained in cardiac critical care, I see and treat every patient with that degree of intensity.  I felt like I could not provide that level of care to my patients. My fear of missing something life altering is too great so I sadly chose to leave that nursing career path.


Sarah Matacale RN, BSN, CCS can be reached at sarah.matacale@gmail.com 

Sunday, February 12, 2017

Clear surgical/face mask arrives!



The Association of Medical Professionals with Hearing Losses announced the long awaited arrival of clear surgical masks.

Read the full announcement and details athttps://amphl.org/fda-approved-clear-surgical-masks-now-available/

Cheers!

Donna

Wednesday, February 8, 2017

Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS)

Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "my rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." 





February 7, 2017


               Thank you for the opportunity to share my artwork. I hope you will take a moment to read what this painting represents and what it means to me.      

I based this painting on the Bible verse Matthew 6:26, that says “Look at the bird of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” This verse means a lot to me, because it reminds me to fully trust in God. Living with CRPS (Complex Regional Pain Syndrome), it is easy to feel anxious about the future.  This verse reminds me that the Lord cares for me, knows my every need, and will provide.
              
               The trees represent each season of the year: spring, summer, fall, and winter. They also represent the seasons of life. This symbolizes that no matter what season we are going through in life, whether good times or hard times, it reminds us that the Lord is always with us in every season life brings.

               The birds in the painting are a representation of the birds mentioned in Matthew 6:26. However, notice that all of the birds are the same color except for one. One bird is orange, while the rest are black.  The orange bird represents a person with CRPS. This signifies how CRPS is an invisible illness, and how patients like me often blend in with everyone else even though we are different.  Even though you cannot see our pain, we try our best every day to fly right along next to the other birds.     


        Thank you,

                                                                                Alyssa Skillman


Alyssa Skillman can be reached at: alyssaskillman@gmail.com