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12 Days of Tap 2021: Day 6

A Note from Maura

The diagnosis, the questioning, the searching, the connecting, the understanding…that you are NOT alone. Whether an individual’s aphasia is the result of a stroke, a traumatic brain injury, brain tumor, infection or one of these insidious, frustrating neurological impairments (i.e. PPA/FTD)…the process, of what a dear friend/TAP client calls “discovery”, is much the same.  It reminds me of the the legendary work by Elisabeth Kübler-Ross and her identification of the five stages of necessary grief: denial, anger, bargaining, depression and acceptance.  This framework and variations of it, are represented as well in the experiences of loss for individuals diagnosed with aphasia. 

There was a time, certainly as I recall in the beginning of my career as a Speech Language Pathologist, that individuals were handed the diagnosis of aphasia with little explanation, and even less hope. The structured, clinical and medical model had inherent timelines and used words that are banned here at TAP:  “plateau” and “can’t”. Therapists were frustrated by the restrictions of funders and clients/families were frustrated by the lack of options.

Fortunately, as the social, pragmatic and life participation approaches formed, the opportunities for discovery, connection, continued stimulation and engagement also rose to the foreground.  In today’s story, we hear from a gentleman whose life purpose was to guide, support and counsel individuals and couples struggling with life’s challenges.  Now, Bill Campbell had to make choices, had to find positive and healing ways to deal with a diagnosis of aphasia, that would rob him of language, but NOT of what he had to say! I know you will be impressed by his grit, determination and yes… his faith. 

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Bill Campbell

I was diagnosed with Primary Progressive Aphasia (PPA) in February 2020 and this diagnosis is the biggest battle in my life. Aphasia includes four domains that affect your life: speech, hearing/processing words, writing and reading. I’m a Licensed Marriage and Family Therapist (LMFT) but I stopped providing counseling services because aphasia impacts my ability to talk and process words when I’m talking to others. I loved counseling couples and families and God blessed me to help people when they were facing family conflict. My life was fulfilled, and I believed I was on the right path and that God was directing my steps.

I worked with married couples, families, and pre-marriage couples to address relationship problems. My wife and I were Directors of the Marriage Ministry at our church in New Jersey. Also, God gave me an opportunity to receive M.Div. and D. Min degrees in Pastoral Counseling. In addition, I received an Ed.S. degree for Marriage and Family Therapy. With His grace, I passed the LMFT board examination.

After the diagnosis, I had a conversation with God. I was complaining about why He would allow my health circumstances to shut down my ministry. God did not hesitate in His response. I didn’t hear God’s voice audibly and I didn’t receive His message when I was reading the bible, but His words clearly came to my mind: It’s not your ministry. It’s My ministry! On a macro level, I understood that it was God’s ministry because God provided me everything that I needed to assist others. But, on a micro level, I thought the ministry was mine which is a falsehood.

One of the important lessons I learned from being diagnosed with aphasia, is fighting falsehoods, such as you’re feel alone and God doesn’t care for your situations. Consequently, lies become stronger each day when you’re not demonstrating courage. I was in the war of my life and I needed help. One day, I researched aphasia online and found TAP support groups. I emailed Maura and she invited my wife and me to a zoom session to explain the program. Also, she sent me to the website with the weekly schedule for TAP support groups. I decided to join the TAP Bible Class. The Bible class leader, Julia, welcomed me to the group and I felt I was at home.

Before joining the TAP Bible class, I participated in two other Bible classes, but the TAP Bible class was the best because I was comfortable and the classmates knew about my struggles because they had similar circumstances. My speech therapist recommended that I write a journal about my aphasia story and I shared the journal with the TAP Bible classmates. After they read my journal articles, they encouraged me to move forward and supported me to write a book for married couples. Every Wednesday, I look forward to meeting my classmates during our Bible Study time together.

Also, I was an e-pal with the TAP Connections program and I connected with two UNC graduate students weekly. Connecting with these students was such an inspiration to me. I truly enjoyed working with them. I thank God that I found TAP and God put me on the right path… walking in His grace. TAP has motivated me and I look forward to joining other groups and maybe even volunteering for TAP in the future. The TAP organization provides positive support and is a lifeline for people who are going through their aphasia journey. No words can truly express the importance that TAP resources provide to aphasia clients and their family!

_____________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2021: Day 5

A dozen years, a million tears, & a priceless gift.

A Note from Maura

As we gathered the stories for this year’s 12 Days of TAP, I was once again moved by the inspirational narratives and the reality that aphasia does not happen to a single individual, rather that the ripple effect of the communication challenge results in changes in roles, life plans and even simple dinner table conversations.  And as the days ticked by, I saw December 17th looming…a date that as one of our clients families put so well was “the worst $@%&# day of my life.”  The memories from that day and the months and years afterwards served to change me to the core… as a person who served people with aphasia to being a person who loved someone with aphasia.

The further recognition that December 17th, 2009 was a whole dozen years ago is simply impossible to believe. After all, just two years ago this week, we published “A Decade of Determination” and despite my dear sweet mother battling a respiratory infection at that time, we could not have known that just a month later, we would be saying goodbye.  Joan Marie Tyrrell English, the Sandra Dee/Florence Nightengale that I labeled her in my story (and that she got quite a kick out of, by the way) was called to her rightful place as our guardian angel… and the pain of that loss is as fresh today, as it was on that January afternoon in 2020.  Since her passing, we all have remarked at how difficult the pandemic would have been for this retired nurse who worried about everyone and everything!  We have felt peace that she did not suffer isolation from her children, grandchildren and dear friends. And we have realized something else.  We have realized the power of her gift.

This 10 year gift embedded in her aphasia (that was not to outshine her 70 years of a vibrant, selfless, passionate and loving life) was what she taught me and what changes in the focus of TAP were her contribution and thus… part of her legacy. Please take a few minutes to read the story of my mom, my hero.  

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Joan English

Once upon a time…it’s how all good stories begin, right?  Of course they do…and then they all end up with “happily ever after.”  Unless you are human, that is.  Because every story, every life, has triumphs and tragedy, celebrations and struggles, and the totality of the story results in a legacy that is unpredictable from the turn of the very first page.   

Joan English has always been, from my perspective, a combination of Florence Nightingale, Mother Teresa and perhaps Joan of Arc.  Big shoes to fill, I understand, but ask anyone who knows her and they will validate the many reasons why I saw her this way throughout my formative years.  She was, after all, born to serve others, nurse anyone and everyone who needed compassionate care and sacrifice without consideration of the impact on her own self.  She has also always been a prophetic and skilled writer…one who could invoke passion, self-reflection, and yes, even a little guilt, with her lengthy prose in the form of stories, journals and parental feedback letters! (If she ever gave up her career in nursing, I’m certain Hallmark would have opened a position for her in a heartbeat.)  As a Registered Nurse, she worked tirelessly in every position to ensure that her patients received everything they needed, even if they didn’t realize they needed it yet.  Her nursing nature continued beyond her retirement, as she would swoop in to save the day with relatives, friends and complete strangers with her gentle, reassuring voice and touch.   

And en route to provide this innate nursing care to her family on 12/17/2009, Joan suffered a massive left hemorrhagic stroke.  A PA State Trooper saved her life on I-81, and she began what would be a long and arduous journey, at Hershey Medical Center in the Neuro-Intensive Care Unit.  The continuum of care from acute rehabilitation, day treatment, outpatient therapy and involvement in TAP was all too familiar for me…almost routine.  Except that this was my mom.   

And the new perspective I gained from watching family members and her friends, medical providers, etc. navigate this journey altered the dream of what TAP was, and what it needed to become.  You see, since its inception, TAP had focused on individuals with aphasia…provision of ongoing programming that challenged the traditional therapy model and allowed individuals challenging, engaging and hopeful travel along this rehabilitation journey.  But what about the children and grandchildren? The out-of-state friends? EMS workers who came to rescue her from a seizure or a fall?  How were we assuring that the family, friends and community were well equipped with the tools to help a person with aphasia live successfully with aphasia?   

Our metamorphosis from Triangle Aphasia Project to Triangle Aphasia Project Unlimited was the result of another completely selfless gift from the woman who taught me everything I know about being a good person, a caring provider and a determined agent of change.  Truly, I used to call it “the great cosmic irony”, citing the unfair nature of aphasia striking down the gifted verbal and written voice of my own mother.  But it all makes sense… it’s as uniquely her as any chapter in her story.  You see, my mom has continued to help hundreds and hundreds of people through her own struggles for communicative access, her need for advocacy in the absence of vocal power and her ability to express the range of emotions with a coy shrug of her shoulder, a shy inviting smile and those warm Irish eyes.   She has changed the scope of our program, allowing us to expand to new and necessary service divisions and inspired innovative program additions that will impact the families dealing with aphasia for years to come. 

Anyone who has ever heard me speak or entertained me telling my personal narrative knows the great respect and admiration I have for my mom.  They have heard stories of significant health challenges (i.e. additional bleeds, seizures, falls, etc.) and remarkable comebacks.  They sit with me in awe at her determination, grit and consistently positive attitude.  They get it.  They see her purpose and are inspired by her story.  They understand, as I do, that this woman lost her language, but never ever lost her message. 

There are so many individuals who could rightfully add to this 10-year reflection, but I wanted to give voice to a few important people in her life.  

From Bob (Joan’s “baby brother”, 5 years her junior):

It has indeed been a Decade of Determination and Resilience on her part.  For those of us who love her, it’s been a Decade of Inspiration as well.  I have never heard her express anger about the consequences of her stroke and have marveled at her acceptance of the limitations that are imposed on her. 

The obvious impact of her aphasia on me and my family is the difficulty in communicating with her, whether by phone or in person.  She remains so mentally sharp and that makes the frequent inability to say what she means so frustrating.

Certainly not aphasia alone, but her aphasia and the other consequences of her stroke have more sadly impacted my family and me.  She was my wife’s premier caregiver and best friend, and I know my wife missed her terribly during the last 5 years of my wife’s life. Each of my sons has so many fond memories of your Mom and so much affection for her, and I regret that because of the limiting consequences of your Mom’s stroke, including aphasia, my grandchildren have no connection with her. 

From Joe (Joan’s first born and only son): 

Mom’s aphasia has presented challenges in the quality and duration of our interactions that involve back and forth communication — especially by phone. Mom has always been very involved and tuned in to all of our lives. Aphasia has turned those interactions into fragments of conversations or dead ends, as Mom struggles to access a word or get a point across. Sometimes she will eventually give up on it, saying “never mind.” I know it is in her mind what to say, but the word or question will not come out.  

We have learned so much about aphasia through TAP resources and watching Maura work with Mom. I have learned to be patient and encouraging when Mom gets stuck, rather than try to guess what she might want to say. I’ve learned that, although her first response to a question may be “no“, if I am patient, she may correct herself and give the answer she wanted to. 

I have learned that aphasia did not rob Mom of memory or access to music, so I will often start a phone call by singing a familiar song and listening to the lyrics come easily to her. I’ve also learned that aphasia did not lessen mom’s sense of humor and mischief. I always try to make her laugh when I speak with her, as her laugh is so natural and authentic. 

I watch my children use humor to connect with mom. She gets so much joy from a short telephone call or FaceTime communication. 

None of us take for granted those precious few minutes of a phone call. She ends every call by saying she loves me (usually to the moon and back). The feeling is mutual! 

Jane (the baby of the family, her other precious daughter):

10 years ago, our lives changed forever. Phone calls and desperate searching until we got word of where Mom was. I got to her side while she still had some words, or at least that’s what I remember.  She looked so scared, and I told her we loved her and that we were there. Acute care and family together got us through those first crucial days and then riding with mom in an ambulance to WakeMed. It was Christmas time – difficult, long and trying to celebrate the slow gains. It was yesterday, and it was 1000 years ago. 

I miss:

  • This woman, a caregiver to all 
  • No comparison: her kind, authentic, caring and forgiving nature 
  • Her selfless nature 
  • Her eloquence in speaking 
  • Her long tear-jerking speeches at special meals 
  • Her incredible love and sacrifice for her children and grandchildren 
  • The model of a loving wife 
  • Her journals written with her beautiful handwriting and sentiments, which allowed all who were fortunate enough to travel with her a rare gift of vivid memories 
  • Her voice; her phone calls, her supportive conversation through the good and tough roads of life

What’s different is difficult for me and for my family. But her – the absolutely loving soul and person is there, and I am so incredibly thankful for her unconditional love and her new voice. I say those who meet her now will never know my mom, but her resilience, grit and sweet soul…. It transcends any physical/communication barriers. 

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2021: Day 4

A Note from Maura

When I started TAP way back in 2003, I often referred to a famous line from a movie called Fields of Dreams.  The quote: “If you build it, they will come” seemed to reflect the amazing response by individuals with aphasia and the families that supported them.  The programs, opportunities to connect with others with aphasia, took off! The growth in the communities was truly remarkable, but what was even more empowering was what happened next.  It appears that the invitation to connect was broadened and that those who served individuals with aphasia echoed the need to gather with others of like mind and purpose! 

I went from leading every group across the Triangle, to welcoming Speech Language Pathologists from area hospitals, rehabilitation centers, and the community to join us in the mission of TAP.  Providers signed up to lead groups, became involved in committees and joined in every fundraising effort that we sponsored.  And it grew… it just continued to grow! TAP Group Leaders were inspired by these amazing TAP clients and the spokes (group programs at outside of the TAP hub) expanded.  Groups were being held in communities across the Triangle and then to it’s west, it’s east and so on. How blessed we have been that this trend, this invitation still echoes even in a time where programs needed to adapt…shifting to an online community 

Today’s story is written by one of our group leaders, Taylor Hickok.  Learn how she views the collaboration between providers who share a Life Participation Approach.  With almost 20 group leaders under the TAP umbrella, it’s certainly true …if you build it they ALL will come.

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Taylor Hickok:

Making Connections During COVID- How I Found My TAP Family

For those of you who don’t know me, my name is Taylor and I am head over heels in love with my job! I am a speech-language pathologist with a very special place in my heart for working with people with aphasia. My aunt, Millie, was diagnosed with Primary Progressive Aphasia (PPA) a few years ago. I have seen first-hand how isolating, confusing, and frustrating aphasia can be. Millie is an amazing woman who spent every Thursday evening for 15 years teaching me piano. She has inspired me to be the best speech therapist I can be (and to follow in her footsteps to teach piano on the side as well!)

My husband and I moved from Arizona to North Carolina in March of 2019. When we moved, I started my own private practice, Rehab Rising, because I saw a need for functional, meaningful, client-centered therapy for people with aphasia (aka the “Life Participation Approach”). I see clients with aphasia in their homes or online depending on their availability and preference. My goal is to eventually get a clinic and hire physical therapists, occupational therapists, and neuropsychologists to make Rehab Rising a one stop shop for stroke and brain injury recovery!

Before my private practice, I had worked in vocational rehabilitation (i.e. helping people with brain injuries and stroke get back to work), and then I did online tele-therapy with children at a virtual school for several years. I loved tele-therapy but wanted badly to get back to working with the population I was most passionate about- people with aphasia!

When I started Rehab Rising, I remember telling my husband, “Wow, I really love doing therapy online, but there aren’t a lot of online therapy opportunities for adults. I wonder if I could start that with my private practice.” My husband said, “It’s a cool idea but online therapy will never catch on.” Boy were we wrong!

When the pandemic hit in March of 2020, I reached out to Maura and asked to get involved with her new online TAP classes. She was kind enough to let me volunteer as a group leader. The day I ran my first online TAP group, I fell in love. The rest is history.

The past two years have been so difficult and isolating because of the pandemic, but also so full of blessings. Even though at TAP, we have been physically separated, we have been able to stay deeply connected with each other through our screens. I wouldn’t change the last two years for the world because the pandemic has allowed me to make connections with a group of amazing individuals who inspire me every day.

Now, Wednesday and Friday mornings at 10am are my favorite part of the week. I get to spend quality time laughing, talking, and connecting on Zoom with my TAP family. I am so deeply grateful this holiday season for TAP and all it has done for the aphasia community.

I wish all of you a warm and joyful holiday season! 😊

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2021: Day 3

A Note from Maura

Reflecting on 18 years of service to the community, TAP Unlimited has welcomed, embraced, accompanied and lost many individuals with aphasia.  It’s a reality that reminds me that being called “A Family” is both a responsibility and a blessing.  I’ve watched clients as they became empty nesters, welcomed grandchildren, lost spouses, celebrated landmark anniversaries and gathered together in the best and worst of times. Yes, it’s heartwrenching to lose a family member, one that entrusted you with their story and welcomed you along for the challenges and triumphs they’d experience along the way. 

And every now and then, when you have filed away a chart, smiling warmly that you were given the opportunity to know them, you open your email to find a gift… the gift of their narrative.  Today’s story is just that.  A reflection on a life well lived and greatly loved, and a life that intersected with TAP after a stroke the same year that TAP was born. Leon Bowman was one of TAP’s first clients, but even as he regained so much of his communication, receiving comments like “Why do you come to TAP? You sound great!”, he didn’t stop attending TAP programs. His gentle, caring nature and welcoming smile was a staple in our Durham group for almost two decades.  His daughter shares her memories of TAP and of her sweet father-daughter bond. And we are all so grateful for that!

________________________________________________

Leon Bowman (as shared by his daughter, Tamara Bowman)

I’m offering my thoughts a little late, but they have not faded despite the years. Eighteen years ago, while at work as a physician, I received a call that would change my life forever, but would change my Dad’s life even more.

I was given the news that my father had suffered a large temporoparietal stroke (affecting the language center). He was in the neuro-ICU and ultimately, regained most of his ability to understand spoken language, but was left with expressive aphasia, making it difficult for him to speak his thoughts. I watched helplessly as my Dad struggled to communicate with his family and make his needs known, and as my mother fought to take care of him and stay strong for all of us.

Being a physician, I felt like I should be able to do something to make things better, but it just didn’t work that way. He began speech therapy and through his therapist was introduced to TAP.  I met Maura when she came to my parents’ home and soon afterward, my dad began attending the support group meetings religiously.

I cannot fully express how much TAP has meant to our entire family over the years.  It gave my Dad a setting in which he felt comfortable being around others, without feeling self-conscious about his speech difficulties.  He looked forward to those get-togethers and continued to attend support groups long after his post–stroke improvements had plateaued.  I attended a support group meeting with him when visiting from out-of-state, and I will never forget how much I learned in that short time.  Up to that point, I had generally tried to finish my Dad’s sentences when he had word-finding trouble, thinking that I was helping him feel less frustrated.  But I learned that by completing his sentences and filling in words, I was indicating to him that I did not believe he could do it on his own.  I was not showing confidence in his ability to learn and grow and improve.  This knowledge transformed my interactions with Dad, and I was able to convey to him that I had confidence in him. 

He regained his language skills to the degree that if you did not know him, you may not even notice his occasional word-finding difficulty.  But he still depended on TAP for support and camaraderie, and that was invaluable.  He continued to attend meetings for over 15 years, until the pandemic occurred.  As I write this, my heart is breaking because my Dad passed away in July. I am still coming to grips with this enormous loss. 

The most amazing thing happened, because last week, I got a call from Maura, who is still following up on those long-time members of her “family”.  It was as if she had sensed our loss.  She shared her memories of both of my parents, and it was medicine for my soul.  It has given me an opportunity to express the gratitude of my entire family for the amazing support we have received for 18 years, from TAP. I know my Dad is looking down with approval of my sharing his (and our) story.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2021: Day 2

A Note from Maura

When I started the Triangle Aphasia Project, we assumed that most of the individuals referred for services would be those who had suffered a stroke or other traumatic brain injury.  But I’ll never forget one of the first visitors to our Grand Opening. Her name was Elizabeth and she had read the announcement in the local newspaper.  She arrived with said newspaper tucked firmly under her arm and proceeded to point repeatedly at the word “aphasia”, saying “I have that! I have that!” Her story, at the time, was unique…uncertain as to the insidious and frustrating loss of her words, she sought neurological evaluation and was diagnosed with Primary Progressive Aphasia (PPA); a type of Fronto Temporal Degeneration (FTD).  Considered rare, but proving less so after almost two decades of service, PPA became a common diagnosis for our organization.  So much so, that TAP has a special set of programs just for this population…TAPLinks.

TAPLinks provides a weekly program as well as a support group for those who love someone with aphasia as a result from PPA/FTD.  Unlike aphasia resulting from stroke, individuals with PPA/FTD understand that their journey is one of challenging losses, changes in all modalities of language (reading, writing, listening and speaking), and a slow onset of cognitive deficits. TAP hopes to provide a network (Links) within and outside of the TAP community to serve these families with a caring, compassionate and comprehensive manner. 

Today’s story allows an introduction to PPA/FTD with input from a couple who recently learned of this type of aphasia.  We are so happy to have Jim and Arlene welcomed into the TAP family early in their journey and commit to helping them along this road.  This wonderful couple has taken advantage of many of TAP’s offerings!  

________________________________________________

Jim Baker

From Jim:

My wife, Arlene, and I retired from positions in higher educational publishing. We were on track to use our time traveling together, but about two years ago I began to experience communication difficulties. My primary care physician directed me to the Neurology Department at Duke. Testing revealed I didn’t have a stroke, but I was diagnosed with Frontotemporal Degeneration and Expressive Aphasia. What a shock!

From Arlene:

In hindsight there were signs of Jim’s condition: mispronunciation of words, difficulty concentrating, losing his train of thought in conversation. Fortunately, Duke Neurology led us to speech therapist, Sarah Stidham, who told us about TAP. We contacted Maura Silverman and were invited to participate in TAPLinks discussion group. Because of COVID concerns the group, facilitated by Kaylea Nicholson, has met on Zoom which worked out perfectly for us. Jim has always been an excellent student and preparing for this group meeting has given him something not only to study for, but also the opportunity to share memories and conversation with other participants and their caregivers. Now, we both look forward to our Monday TAP session.

I also recently took the “Learning to Speak Aphasia” session, and learned so much. I started implementing the communication strategies with Jim immediately. We are so thankful for all the resources TAP provides.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2021: Day 1

A Note from Maura

TAP Unlimited, now in it’s 18th year of service, has focused on the individual with aphasia, their family/friends and the community. It is within these service divisions where we recognize the uniqueness of every situation and the relationships that have been impacted by the presence of aphasia. The terms carer, care partner, care giver, support person, etc. only scratch the surface of the role that a significant person has in one’s life, as these individuals may be a spouse, parent, sibling, friend or child.

2021’s inaugural 12 Days of TAP story reflects a relationship that I can relate to in a very personal way…that of a mother-daughter connection. Saadia’s mother, Mona, suffers from aphasia after valiant battles with cancer. In these years of struggle, Saadia and her entire family gain invaluable lessons in grit, determination and resilience. The respect and admiration that Saadia reveals as she reflects on this journey so far is more than admirable; it is evidence that the proverbial apple doesn’t fall far from the tree. Saadia inquiries, searches, advocates and actively pursues opportunities to assist her mother and in doing so, reveals her mother’s gifts to her character. 

I hope that reading her story today, as we launch this year’s 12 Days of TAP, you are empowered to pave this recovery road by your own insistence on comprehensive, compassionate care. And know that, without a doubt, you are not alone.  

________________________________________________

Mona and Saadia Smith

My Mother, Mona, was diagnosed in 2013 with breast cancer. After a double mastectomy and chemotherapy, she began her recovery back to normal. 

She went back to work at her government job for over 25 years where she supervised a team of people in her field of Criminal Justice. She remained active in her sorority. Visiting and playing with her two grand kids were always a treat. My Mother even joined a few boot camps to become physically fit. With the encouragement from her husband, she was determined to make her New Normal even better.

Then at the end of 2018, she began having intense headaches for days. Not soon after, she found out that she had a very rare brain tumor. Extra Skeletal Maxiod Chondrosarcoma. Her doctors were phenomenal and removed the tumor in 2019. Her treatment was progressive, a learning curve due to it’s rarity. At the time, her physical recovery was most important and was prioritized above everything else.

Let’s Fast forward to early 2021, where we are now in the midst of COVID. The rare tumor unfortunately reared its ugly head, once again. We have learned the nature of this aggressive beast and approached treatment more aggressively too. It was removed and we pray that it will never come back.

The location of the brain tumor has done some damage to the left side of her brain. This damage affects movement and feeling on the right side of her body. It also affects her language. Her processing and understanding has been deeply impacted. This has been detrimental to her confidence and social interactions.

After desperation to help her find her New Normal, once again, Google brought us to the Triangle Aphasia Project. TAP has been nothing but a Godsend to my Mother. TAP adds another dimension to her recovery that we did not know she needed. My Mother actively attends TAP virtual groups where she builds her confidence in language, processing and understanding among friends who are fighting the same fight of Aphasia. We are now connected to resources that will further her speech development. Because of TAP, our family is continually learning the best way to communicate so that she feels empowered to feel like the woman she is.

We are Blessed to have found the Triangle Aphasia Project. My Mother, Mona is now motivated to recover physically, socially and spiritually because of the new found confidence that TAP is providing. The support of this organization is unmatched and we believe that my Mother will find and love her New Normal.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

  • Text “tapholidays” to 50155 
  • Visit aphasiaproject.org to make a one-time donation
  • Join our Ice Breaker Club to become a monthly donor
  • Donate on our Facebook Fundraiser and share with your friends
  • Print and clip the form below and mail a check
  • Make a donation of stock; email us for more information

12 Days of Tap 2020: Baker’s Dozen Bonus!

Ice Breakers: Continuing the Conversation

Maura’s Intro:

12 Days of TAP:  …. Wait… it’s Day 13!!

Well, you have heard of a Baker’s Dozen, right?  An extra bagel, donut or cookie thrown in for good measure?  Well, this is what this post is all about.  It’s about the TAP Stakeholders that have gone the EXTRA mile. The individuals who have not just supported TAP; but have made a commitment to help Continue the Conversation by joining the Ice Breaker Club!!!    

What is the Ice Breaker Club?   

Well, I’m glad you asked.  The Ice Breaker Club is TAP’s Sustainer program.  Sustainer programs are so vital to an organization, as they provide a consistent and predictable stream of funding.  With donations automatically being contributed monthly to TAP, our ability to anticipate program needs and secure essential revenue for projects is greatly improved.  Ice Breakers recognize that a good conversation develops from a solid relationship and loyalty…and we are blessed to have their support!   

Today’s story is one that truly warms my heart, because it is furnished by one of our longstanding Ice Breakers.  But this sustainer doesn’t have aphasia, has never been to TAP and doesn’t even live in NC!  She represents, though, how supporting someone’s dream and a program of true value can stretch across decades and states.  I’d like to introduce you to my “old” friend, and a TAP Ice Breaker… Peggy!


Peggy

Peggy George (Sustainer): Maura and I go way back… to big hair and Aqua Net days!  We were high school buddies and roommates our freshman year at the University of Scranton. 

After that first year of college, I stayed at the U and got a degree in mathematics – but Maura moved on to Marywood and Ithaca Colleges pursuing advanced degrees that required not only logic, but heart as well.

We kept in touch over the years, celebrating the births of our children and supporting each other through the passing of our parents.

And while those connections would have been enough for me to support my friend in her vital work, I also personally understand the significance and outcome of the type of work TAP performs. My sister suffered from aphasia after brain surgery, and thanks to the dedication of professionals like Maura and her team, she fully recovered.

I am very thankful that I have the opportunity to support TAP and the life-changing work they perform.  I hope others will consider donating as well.

Interested in becoming an Ice Breaker? Click here to fill out the Ice Breaker Club form!

From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online (one-time or recurring) and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

12 Days of Tap 2020: Day 12

A Holiday Message for YOU!

Maura’s Intro:

We have something super special for your final day (or is it??) …Day 12 of the 12 Days of TAP!

Day 12 brings you the most caring, passionate, incredible individuals who lead the TAP Unlimited Group Programming… we couldn’t catch all of them, but you will see some common themes in all of the Speech Pathologists, Music Therapists and Leaders that TAP employs…they LOVE their “job”!!  I’m so blessed to call these people my colleagues, my friends and yes, my family!!  Enjoy!


Abbe Simon: T is for terrific, tremendous, togetherness  
A is for amazing, abundant, achievement 
P is for passionate, patient, people  
 
TAP adds so much to my life. I am grateful to be part of this special organization and to know the people who continue to show me that nothing is impossible. 

Sara Summers:  In the short time I have been a part of TAP, I have been impressed with the supportive community it provides.  Participants cue and help one another in a non-judgmental way and truly enjoy one another’s company.  TAP has made a tremendous impact on decreasing the sense of isolation during this pandemic and I’m honored to be a part of such a great organization. 

Sevanne Epperson:  Our TAP community has shown our strength and resilience this year. TAP embraced the virtual world and without interruption we continued to serve our families. I feel incredibly fortunate to be a part of such a strong organization. It is truly an honor and privilege to be able to make a difference in the lives of our clients. 

Tisha Shah:  TAP is a community of people from many walks of life who are bonded by their experience with aphasia or by a commitment to supporting those impacted by aphasia. Although, everyone’s journey may be different, the fabric of TAP has many common threads…compassion, inspiration, connection, understanding, love, encouragement, and support. TAP community members are doing life together by supporting and celebrating each other through all of the ups and downs. We are centered on the knowledge that aphasia awareness and advocacy are vital in our community and that personal goals can be achieved through our own determination and resilience. In every TAP group, event, or interaction – hope, determination, purpose, and engagement can always be found. 

Julia Bryan Canavan: TAP has been a blessing to me this year in ways I never imagined. After resigning from WakeMed as a SLP after 31 years due to COVID, I have the opportunity to able to participate in TAP zoom groups the two groups people with aphasia of diverse ages and backgrounds I work with each week have been a huge encouragement to me. I have seen the relationships and discussions in these groups between these individuals grow in their communication skills along with developing relationships as family in a time of isolation for so many. It has been the greatest privilege and gift to me to participate and grow so close to these wonderful and diverse individuals I have yet to get to meet in person.  
 
I am privileged to be a part of the TAP network and encourage your support of this impactful organization in any way you can. The blessings I have received are indescribable. THANK YOU TAP!! 

Megan Wardlow: Even in these crazy times, TAP is a welcoming family to all newcomers! I am thrilled to have found a place to hang my speech therapist hat, make new connections, and get to serve a top notch organization. It is a delight to watch our clients have meaningful interactions with each other and therapists, even if it is just via Zoom. I can’t wait until I can attend my first in person session. 

Martine Bullard: TAP is a wonderful organization that provides a home base for so many people.  Amid the uncertainty and stress that everyone has experienced this year, TAP has been steadfast, and continued to provide important personal connections as well as opportunities for people living with aphasia to improve their speech and communication challenges.  I am so proud to be a part of the TAP family, and to be able to provide music therapy during weekly Music Mania sessions! 

Candace Seibert: In this season of giving, I am reminded that TAP is a huge gift in all our lives. In the seven years I have been blessed to be a TAP group leader, I have worked with, learned with, laughed with, and at times even cried with the most amazing group of people I have ever known. What a privilege to have the chance to know this incredibly diverse family. And to think we would never have known each other were it not for TAP! Let us all rejoice and support TAP in these last days of 2020, as we look with hope toward the future. 

Taylor Hickok:  Aphasia can be so isolating, especially so during a worldwide pandemic. TAP has been the antidote to this isolation. Despite all the hardship, loneliness, disconnection that 2020 had ushered in, TAP has worked so hard to provide a sense of community, support, empowerment, and connection for the individuals and families we work with. I have no words to describe how grateful I am to be a part of this amazing organization and I look forward to seeing what great things 2021 brings.  

Crista Misenheimer: TAP has been able to provide community and support when people have needed it the most. TAP clients inspire me every week and I’m honored to be a part of this organization. 

Kelley Shaver: TAP’s core values for our members are Hope, Determination, and Purpose. Unexpectedly, these are the gifts I have actually received from the TAP family over the past 8 years, particularly during this long, strange year. Thank you for providing me HOPE through the laughter shared during our virtual meetings, DETERMINATION to keep striving for continual improvement both personally and professionally, and a PURPOSE when it feels like there are so many things beyond our control these days. 

It is such a gift to be a part of this family and I hope that all members can feel the connection and warmth, despite our physical distance this year.  

Caroline Elmore: 2020 has been a year for the books. I am so thankful for TAP and the community that comes along with it. Being a part of TAP has been a life changing experience and I am excited to see what 2021 has in store!   

Kaylea Nicholson: I am so proud to be a part of the Triangle Aphasia Project. I love starting each week with TAP into Talking and TAPLinks. It is amazing to see how the clients support and inspire each other. I’m looking forward to 2021 and especially to eventually seeing everyone in person again.  

Kristine Strobbia: Gratitude. Connection. Family. These are the words that come to mind when I think about TAP. I am forever grateful for the opportunity to connect with this TAP family. During such a chaotic year, TAP has been a consistent safe haven for us to find joy, laughter, and perseverance. It is my greatest honor to work with each and every one of you. May you all have a safe and blessed holiday season. 

Rieppe Hendrick:  Wishes for a peaceful Holiday!  I am very blessed to be involved with TAP at Home!  Not only has positive social and wellbeing been witnessed by the TAP clients but undoubtedly by the group leaders involved in TAPRoots as well.  Thank you TAP Family for providing me with focus and connection during this trying year! 


From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

12 Days of Tap 2020: Day 11

New Additions

– Karen Mercado –

Maura’s Intro: 

The incredible gift of this job, ask any of the TAP group leaders, is that we have the opportunity to meet these awesome people that make up our TAP Family.  The hard part is knowing that we all wish we hadn’t “needed” to meet.  A common thread in these 12 Days of TAP stories seems to be that people are hesitant, nervous to join a program about an impairment that they may just be learning about themselves.  Most, if not all, don’t anticipate or want to believe, that they will need the programs and support beyond their initial hospitalization.  But the reality is that recovering from aphasia…compensating for reading/writing/speech/listening challenges and formulating new pathways (yay neuroplasticity!!) doesn’t come easily or quickly.  Finding cohorts in the journey, others who are traveling similar pathways, people who “get it” … this can be the game changer!    

I love how Karen describes TAP within her recovery story.  We love you and are happy that your family is now a part of the TAP family.  


Karen (client):

TAP has been such a major part of my healing story and just the fact that I am able to write it and type it is proof. I was a special education teacher for 10+ years before I had a massive stroke when I was 7 months pregnant with my second child on October 15, 2018. I wasn’t feeling well and on my way to work that day when I had a headache. Next thing I knew I woke up in a hospital bed 18 days later barely able to speak or know my name. Over months of rehabilitation and so much support from my family and close friends, I was able to come home in December just in time to celebrate Christmas with my family.  

I heard of TAP from an inpatient nurse at UNC hospital who shared that her own husband suffered a stroke and benefited from the amazing services TAP has to offer. Unfortunately for me, having a wicked case of post-partum depression along with adjusting to new life with certain limitations was a challenge for sure.  After sometime I told myself Ok I was ready to “meet” TAP! Of course perfect timing as COVD hit. Thankfully that didn’t stop TAP as they went virtual! The meeting is posted every week and clients (like myself) can and checkout what they would like to take part in each week.  It has been such a wonderful way for those who had to deal with a tough time finding some peace and knowing that they aren’t alone.  I so enjoy going to Music Mania and Movie Club. It has been really great to find stroke survivors and brain injury survivors who can relate to what I have gone through and want to talk with me about it.  It has also been great to just have some socialization that isn’t strictly on stroke recovery and speech (although it is understood why it is a part of it.)  

Maura always calls this group the TAP family, and at first I thought she was just using it an a “cute” way, but in no time (and through COVID craziness) I have come to see that it is really true. I have enjoyed the valuable time with great new additions to my life and I look forward to more good times to come.  

David (Karen’s spouse):

The saying, “Life can change in an instant” became true to our family in October of 2018. In an afternoon I was told my pregnant wife had a headache, to a physician informing me to say my final goodbye, to waiting nearly three weeks later for her to wake up and hear her voice again. During this dark cloud, our love for each other remained strong and our rainbow occurred when we welcomed our newest addition to the family, a beautiful baby girl.  

TAP has been an amazing outlet of support not just to my wife directly but to our entire family. With the resources TAP has to offer, Karen has an opportunity to share experiences with others whom unfortunately walked the same path. As caregivers we see all and always there for what happens next but TAP offers different thoughts, feelings, and ideas for individuals adjusting to their recovery.  


From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

12 Days of Tap 2020: Day 10

Life Interrupted, but Far From Over!

– Stephen Albright –

Maura’s Intro: 

“Twenty four??  What?  I thought strokes happen to older people!”  Those of us in the rehabilitation field hear this exclamation often…shock that someone so young could suffer a brain injury of this type.  But, unfortunately, it happens and the incidence is rising.  I’ve read that more than 10% of the 800,000 strokes that happen in the U.S. each year strike adults younger than 45.  And a stroke occurring in a teenager or young adult is certainly a devastating blow in so many ways.  TAP Unlimited serves individuals from 18-99 years old and our average age is 47!  Think about all of your activities, hopes and aspirations begin complicated, or outright sidelined, by a stroke and aphasia.   

I am so appreciative of Stephen, who is relatively new to our TAP family, for sharing his story, for diving into the mission of awareness and advocacy for aphasia and for bringing to light the challenges that COVID-19 has had on those experiencing stroke/aphasia in the midst of a pandemic. Watch his video!  Stephen’s dramatic and terrifying recounting of feeling “confused” and “alone” in the hospital upon awakening from brain surgery is chilling. It is what we, as speech pathologists and healthcare workers, have feared!  But its also what we have taken on as a valid and vital accessibility and human right!   

A person with aphasia, a communication disorder, requires…and has the right, to supports necessary for communicative access… and yes, this often means another person!  Per the amazing organization CommunicationFIRST: “If you are a patient in a hospital or other health care setting, you still have communication and other civil rights under Titles II and III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act (ACA)—even during a pandemic.”  The realities of COVID-19 are frightening and the restrictions put in place by healthcare facilities, adult living communities and businesses has been essential.  This can not, however, result in limited access to information and services for people with difficulty in comprehension or expression of language.  TAP has both heard and witnessed the impact of how an “abundance of caution” has resulted in increased isolation and risk…we have also heard of great advocacy on behalf of individuals with aphasia by healthcare workers, family members and volunteers.  We encourage creativity (i.e. FaceTime, Zoom, etc.) and consideration in anticipating and determining needs of persons with aphasia during this challenging time.  Contact TAP for information on strategies and tools you can use if your loved one is hospitalized or lives in a facility and stay tuned for an upcoming TAPTalk.   

Stephen, thank you…for this opening to share information on aphasia advocacy and for being a strong voice representing each of our values:  Hope, Determination, Engagement and Purpose.  We are grateful for you!   


 

Stephen (Client):

My name is Stephen Albright and I’m 24 years old. I had a stroke seven months ago because of an “AVM”, which is a birth defect where a vein and an artery is twisted together. I’m still working on my aphasia, but I’m progressing and I’ll get there!

While I’ve had multiple adversities in my life – concussions, cancer, and a stroke – I’ve been lucky to have my family, friends, and therapists. They have pushed me every day to get better, and I wouldn’t be able to do this without them.

I really believe that adversity is what makes us stronger. We just must keep going! 

https://www.youtube.com/watch?v=eQwO9AAlJ3A&feature=youtu.be

From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

12 Days of Tap 2020: Day 9

Zoom TAP meetings: Possibilities Abound

– Louis Pate –

Maura’s Intro: 

Covid-19 has kept people apart…and wait…it’s also brought people together.  Being able to see the silver lining of this global pandemic often requires one to recognize new opportunities and seek out topics and activities of interest.  When TAP groups shifted, we worried about losing loyal attendees and how individuals would adapt to this new and changing landscape.  But our TAP clients are known for their determination and as we watched clients “pop into” new groups…we saw possibilities open up!   

It was clear that Louis would enjoy a conversational group… he is extroverted, social and has an innate gentle character that is magnetic to all who know him.  Louis joined in groups that were based on conversation, movies/TEDTalks, music and even meditation.  Louis sits aside his wife, Joyce, but relies on her only for visual prompts.  He has gained confidence in his communication and is consistently welcoming and passionate about aphasia advocacy.   

Louis and his wife participate in our Meditation group, led by Joelle Rogers, our meditation and yoga guru, as well as another fierce stroke survivor.  

Enjoy.


Louis (Client):

Little did I know what was about to change my life 2.5 years ago! After many years in politics a hemorrhagic stroke left me with limited vision and expressive aphasia. Talk about discovering a whole new world! 

We live an hour’s drive from the triangle area, but after my initial therapy we discovered a group of helpers who were available to help me continue my therapy. We took advantage of two groups—a conversation group in Clayton and a book club in Cary. I was an active member until the pandemic hit. That was another sudden thing! 

The facilitators were so nice to call and check on us and even sent masks. They were the ones who encouraged us and told us we should get involved with the Zoom groups. That was not something we were used to. Sometimes I have to stop and think and remember I’m not going to a meeting. I’m in a meeting at home and the other people are in their homes, but we are all together. I’m at home, but yet I’m otherwise. 

The groups in TAP are very welcoming and dynamic people, and that has been very helpful to me. Some of them are well beyond my abilities, and I have enjoyed getting to know people like that from all over. It’s stimulating to have people of various backgrounds gather. We’re from all walks of life, but we’re all responding in our way to what has been laid upon us. There are a lot of things lacking because we’re all recovering and because of the pandemic, but we are meeting to attempt to make up for those things. We’re battling two different things together. 

The therapists and facilitators are top notch and very qualified. They do a good job of dealing with the differences among the groups and make sure everyone is engaged and participating. A lot of them are volunteers and give of their time to help. That means so much. 

I have especially enjoyed the music, Bible study, and book groups. Music is very entertaining and important to me. I used to sing in a community group and my church choir. The music gives me a way to express myself and continue to do something I love. The Bible study group is full of believers who have different backgrounds and ideas, but we all tend to agree with each other’s responses. We support each other and pray for each other. In our book club we read interesting books that I wouldn’t have read otherwise. Beneath A Scarlet Sky by Mark T. Sullivan was fascinating to me. I was in the Air Force for 20+ years and am a Vietnam Vet. The book helped me visualize war from a different point of view. It was so realistic–a marvelous book! 

 Another great group is the meditation group. Joelle has very calming directives that give us all a sense  of relaxation.  

TAP helps me so much. There are certain places in your mind where you don’t really want to get deeply involved, but you realize if you don’t then you are going to miss out on something. TAP makes me work and think. It makes me realize that I missed some things and helps me expand my horizons.

Joyce (Louis’ wife):

As a “helicopter spouse” – a totally new role for me – I’m grateful for the opportunity to participate in the Care Partners Support Group.  At this point I cannot imagine life without TAP; what a blessing you are to us! 


From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

12 Days of Tap 2020: Day 8

Aphasia: Learning that you are NOT Alone.

– Tanya Locklair –

Maura’s Intro:

Today’s story offers more than inspiration, more than motivation… it offers the opportunity to pause.  To be grateful.  To be present.  It’s a gift and it is personified by this incredible woman.  Tanya came into the TAP Home Office for her consultation accompanied by her friend, who just so happened to be her boss.  It was evident immediately that this law practice, Banks Law Firm, was more than a group of attorneys… it was a family and so the transition to our TAP family seemed, to me, a perfect fit!  I listened as Tanya told her story with grace and a paucity that made me absorb her entire experience.… I listened as she explained how her firm had stepped up and wanted to assist her as she embarked on this aphasia journey and there was a sense of calm commitment that to this day, I can’t explain.   

Tanya needed little coaxing to step into the group and appeared immediately relieved to know that the language challenges she was experiencing represented a shared reality. She captivated the group as she shared her narrative and was encouraged by their stories.  I was watching what I always dreamed that TAP would become, what I already knew TAP was…it was a safe place, a haven for this journey…and yes a family. Moreover, Tanya and her boss invited me to her law firm on multiple occasions to educate and train her coworkers on the impact of aphasia.  These trainings were evidence of the understanding that all persons who communicate with people with aphasia need the tools to assist, challenge and engage.  

I’m so appreciative that Tanya agreed to provide her story for the 12 Days, because here you will feel the reality of aphasia’s frustrating presence, but feel assured that hard work, commitment and faith will allow you to address, and often achieve, your goals.  Tanya has made incredible progress since her stroke…she continues to work, enjoy her hobbies and now serves on the TAP Unlimited Board of Directors.  Her role as an attorney, a stroke survivor and a woman with a mission to insure equitable services to those with aphasia…is a true gift to our organization.

Enjoy this video and written story!


Tanya (Client):

Immediately after my second stroke in June 2018, I was barely able to speak, and unable to read and write.  Like others who suffer from aphasia, the effects of this disorder were devastating to me personally and professionally as an attorney.  TAP has been instrumental in helping me find my voice, both literally and figuratively, by giving me the tools to better communicate, by providing me the confidence to know that I am not defective because of my condition, and most iportantly, by making me feel like I’m not alone. 

I am grateful that I can benefit from the excellent programs and support that TAP offers.  By being a client of TAP who is also a member of the Board of Directors, I am committed to making sure that “the voices” of those with aphasia are heard, loudly and clearly.


From the TAP Home Office:

TAP Unlimited’s End of Year Campaign provides TAP Stakeholders an opportunity to embrace the reason for our efforts and hear from those who have been impacted by aphasia.  Aphasia, as you know, can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life.  It can interrupt a career, destroy plans for retirement and threaten relationships.  TAP Unlimited is embarking on its 18th year of service to those effected by aphasia across the Triangle and beyond. 

Our ability to pivot and create a virtual world of connection possibilities, to stay afloat and to even thrive, has been, in no small way, a result of the generosity of our donor base.  Today, we ask that you continue to support TAP by doing the following:

  • Share this story.  Share it on your social media, in emails to your family/friends and to those you work with…it will increase awareness of Aphasia and provide hope to those who feel alone in this journey.
  • Consider an end-of-year gift to TAP.  You can donate online and make it a gift by honoring someone on the aphasia journey.
  • Donations can also be mailed in the form of a check or a donation of stock. Email us for more information.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!