This end of year tradition is a time to highlight the true meaning of TAP…the impact of our existence and service on individuals and families.
TAP understands that organizations need to prove their worth,…their value to the community. Many times this “outcome data” measures changes in language levels, small increments of improved scores on an auditory comprehension test or better word finding abilities. But, we also understand that TRUE change, the often intangible that TAP allows, are the friendships, an increase in social engagement, connectedness and improved communicative confidence.
This year, once again, we are able to share stories of change…in many ways that matter more than any score on any test could ever! Great appreciation to those who have shared their stories for this year’s 12 Days of TAP!
Most people understand that aphasia generally is the loss of ability to understand or express speech; it’s an impairment of language. Aphasia results from damage or injury to the brain—in many instances, from a stroke. But did you know that there is a type of aphasia that is called Primary Progressive Aphasia (PPA)? Unlike other forms of aphasia, PPA is caused by a neurodegenerative disease—usually a subset of frontotemporal degeneration (FTD). And while aphasia can strike a person suddenly due to an event such as a brain injury or a stroke, PPA is different because it is stealthy and creeps up on a person over a number of years.This is what happened to my husband, Christopher Lannom.
I have so admired TAP since the early days of its conception and have been amazed at what has been accomplished and especially the courage and determination of the people who benefit from all of the help they get there. In the early days I was honored to volunteer with TAP helping raise money, attending various events, keeping the books and eventually serving on the board. I saw first hand how much TAP helps those dealing with aphasia through therapy but also establishing wonderful friendships with one another. I still remember so many people – Ray, Rachel – and many others – who I considered dear friends. I just never thought that I might need that help.
From Sam – Joyce’s husband:
Joyce had her stroke in May 2011. TAP means a lot to her and to our family. Going to the TAP group helps her in so many ways. It has given her a safe space for being understood. TAP gives her the opportunity to improve herself while in a sense of community. She has gained friendships despite the social roadblocks her aphasia has brought. She has something to look forward to with all the smiles that go around! With the support of her TAP family and friends she finds the strength to never give up!
From Lina and Heather (Group Leaders):
Joyce always comes to group with smiles for everyone. Despite her communication barriers, she is eager to participate using whatever means she can. She accepts any and all communication challenges we throw her way and is proud to share them with her friends in the group.
We also can’t talk about Joyce without mentioning her husband Sam. He provides never-ending support for Joyce. He is a fixture of the TAP group as much as she is! He doesn’t just provide encouragement to Joyce, but he is always near by to step in and help the other group members as well. The Wednesday Raleigh group just wouldn’t be the same without these two!
My name is Jenny Kearney and I’ve been the office manager at TAP for about a year and a half. I can’t believe it’s been that long! When I started working at TAP, I had no experience with aphasia or even with nonprofits. I just knew that I wanted to work somewhere that felt like it was doing good things for the community, where I could be around people, and where I might be able to use my “jack of all trades, master at none” background to help out. Wow! Did I fall into something incredible!
From the moment I walked into the main office for my interview, TAP felt like home. The physical space was warm and inviting. Maura was energetic, joyful, filled with ideas, hope, and compassion for others, and was clearly very smart and creative. Her passion for her mission was palpable, her enthusiasm contagious. I got excited about what TAP was, who it was helping, and where it wanted to go before I even met the first client. I knew immediately that this was a place I wanted to be.
As a speech-pathologist, I know the ingredients for successful aphasia recovery: offering different modes of intense treatment delivered over a long time, providing tools for clients and family members to communicate with each other, and offering emotional support to everyone affected by aphasia. We had excellent traditional speech therapy in Winston-Salem, beginning when a person first has a stroke extending into the outpatient setting. But I felt like there was a missing puzzle piece, bringing services and support into the community where people actually live and communicate. I reached out to Maura and found a partner whose passion and enthusiasm were only matched by her high expectations for what people with aphasia deserved.
My husband, Joey Propst, suffered from two massive strokes in January
of this year at the age of 46. At the time the strokes happened we were unaware that Joey had any health problems, other than a cold that had caused a severe headache. We heard of the Triangle Aphasia Project (TAP) and Maura, the Executive Director, from speech therapists starting at the intensive care unit at Duke and then later while at WakeMed for acute Rehabilitation. The therapists at both locations explained Aphasia and Apraxia to me. It was all very overwhelming.
Joey joined TAP after beginning outpatient therapy. TAP has been
invaluable to Joey’s recovery. It has given him a place to go to work with others that have similar circumstances. Joey’s spirits have been bolstered by seeing others at TAP who have improved. The hope and support from TAP helps him believe that his reading, writing and speech will improve and that working his mind to create new pathways is important. He has gained confidence from attending the TAP sessions.
We are just finishing the first year of the long marathon called
recovery. I cannot imagine the year without TAP. We are so grateful that Maura is able to lead such a wonderful group to help people with Aphasia and Apraxia.
We don’t walk around in thunderstorms. Our oldest son, West was diagnosed with Leukemia in December of 2004. Six months later we got confirmation that he was on the Autism Spectrum. Two weeks after my 44th birthday, I had a heart attack. On Halloween 2015, my wife Christy, at 44 years of age, suffered a hemorrhagic stroke.
We have been fortunate in our bad luck. West’s Leukemia, ALL, was 95% survivable. He is high functioning enough, on the autism spectrum, to attend regular school. My heart attack was due to an inherited trait, easily treated with medication. Christy survived her stroke, only just, and has made miraculous strides in her recovery. We expect to have her final surgery sometime early 2017, and she can focus all her energy on recovering use of her right side.
Thanks to TAP, communication is something that has come back faster and better than anything else. While she is restricted in her physical activities, she has been dedicated to working on her aphasia. TAP has allowed her to work on her recovery, and see the gains she is so anxious to achieve. While not everyone could eliminate speech therapy, as we have, attending TAP has shown greater improvement over time than anything else. I believe, the facilitated interaction with other stroke victims, has shown Christy that while the improvements come slowly, they do continue to come, if you are dedicated to the work. TAP has provided the environment and expertise to allow her to not just improve, but thrive.
My husband, Ken, suffered a massive hemorrhagic stroke on 11/24/2014. He stayed in the ICU for a month in a coma. He woke up on 12/24/14. During his stay in the ICU, the doctor tried to tell me to give up, but, I knew that our Heavenly Father was in control, not the doctor. A few days after he woke up, he went to Duke Rehab Institute (part of Duke Regional Hospital) for a month of rehab both physical and speech, because his stroke also affected his language area, and he had aphasia. When he went home on 2/9/2015, he was on a wheel chair and did not talk much.
Before his stroke, Ken was very out-going, loved to interact with people, serving in our church, our Bible study, getting together with our sons and their friends over dinner and talked to them about life, God, and anything they wanted to talk about. After the stroke, with hemiparesis and aphasia, his life was totally different from before. He could not do a lot of things that he loved to do.
We went to TAP in the summer of 2015. At TAP, Ken not only received speech therapy, more importantly, he found friends that he could relate to. Every time at TAP, Ken is laughing, joking, singing, talking and having fun with his friends while working on his speech at the same time. He started to look forward to go to TAP. Through TAP, we also made some friends that we go out to eat some times. To Ken, TAP is a very important part of his life.
I had never heard the word “Aphasia” until 2005 when my wife, Debbie Ottavio, was diagnosed with this neurodegenerative disease. Primary Progressive Aphasia (PPA) is normally a by-product of frontotemporal degeneration (FTD). Aphasia can, more commonly, strike individuals as the result of a stroke or a traumatic brain injury. PPA is very different as it slowly impacts the individual over time and continues to intensify.
In early 2004 at the age of fifty, we began to see Debbie’s inability to think of a word as she was in the normal course of conversation. Initially, we laughed it off, and Debbie attributed it to menopause and then to female replacement therapy. After several visits to neurologists in Raleigh, UNC, Duke, we finally received the diagnosis at John Hopkins in late 2005. Many tests were done to rule out other diseases like ALS, Alzheimers, MS and several others. Once diagnosed and understanding PPA, we focused on dealing with this crippling disorder. Debbie was of strong faith, and when talking with her Aunt one day, Debbie said, “You know – God must have a plan for me and I’m just going to go along with it.” You see – that was my wife – strong in her faith, strong in spirit, and strong in living every day to the fullest.
T – Transform: make a thorough or dramatic change. Triangle Aphasia Project’s methods transforms lives, yes, the person who is effected, but also the community around that person. Our greater community is transformed through the loving, guided methods of recovery and care. A voice in darkness.
A – Advocate: a person who publicly changes policy. Triangle Aphasia Project’s ground breaking methodology is impacting the community of medical providers and audiologist using a holistic approach. Voices of Change.
P – Potential: having the capacity to develop into something in the future. The Triangle Aphasia sees what is not yet seen, and with their experience is able to breath hope and life into the heart. A voice is found.
TAP has designed a successful model that is building life back to those lost their voice through injury. I value their methods and love partnering with them through adapted sports!
Friendship, God, Laughter, Physics, Photography. These are the words some of our TAP clients used to describe their “gifts” during this holiday season. These are the gifts they consider their own, not gifts to be given or to receive. Rather than think about exchanging or buying presents, our group thought about how lucky we are to have inner “gifts” to share with those around us.
TAP has been a gift to me. When I surround myself with people who, despite their aphasia, demonstrate understanding, compassion, patience, hope, and engagement I feel lucky. As a speech language pathologist with twenty years of experience, I continue to want nothing more than to provide support for people with aphasia and their families. TAP allows me to give my “gift” of helping others and at the same time, receive the gifts that each member and staff person gives. Each group at TAP, whether at our main Hub in Cary, or throughout the state, fosters an environment that promotes comfort, support, and opportunity. My three years at TAP has allowed me to form relationships that not only help the dynamic of each Aphasia Day, but make me want to provide the most appropriate and relevant support that each client deserves.
I hate when my phone rings before the alarm goes off because I know it is always going to be bad news. That was exactly what happened when we got the call around 4:30 am. My mom and Dad had just their sold their business of 43 years in September of 2015. They had aspirations to retire and relax but on December 27, 2015 my dad, Louis had a hemorrhagic stroke. The stroke left him paralyzed on the right side of his body. This has affected his ability to walk, use his right arm and his speech (aphasia).
He spent several days in the ICU at Rex. We sat by his bed wondering what would be next. Waiting and listening to the doctors did not give us much hope, but if you know Louis he his stubborn and doesn’t give up easily. He made enough improvements to move to the 3rd floor until he moved to Mayview. This is where the real journey began. He began working in physical, occupational and speech therapy. PT and OT were great he made small improvements. We were still at a point where he pointed a lot and became very frustrated with communication. As we got closer to being discharged his speech therapist said that we should look into the Triangle aphasia project (TAP).