The Blessing of TAP

– Russell and Betty Nemitz –

From the TAP Home Office:

Generally, when one thinks about Aphasia, they think Stroke, TBI or even tumor.  There is another etiology of aphasia that is different in onset, progression and outcome.  This aphasia is often referred to as PPA, or Primary Progressive Aphasia.  PPA is under the umbrella of FTD (Frontotemporal Dementia) and can present in many different forms (i.e. semantic, agrammatic or logopenic), but the insidious slow onset of language impairment is common among all variants.  Individuals with PPA will have progression of this language impairment, as well as eventual cognitive challenges.  PPA is very frustrating for the individual and his/her family and friends. 

TAP is honored to serve so many families with PPA that we needed to add a special group to our lineup.  TAPLinks is the program which currently meets weekly to provide language strategies, communicative practice and training/support.   We know that this is just a piece of the puzzle needed, but with your support, we can add additional components to this essential program.

Today, Betty and Russell share a little about their PPA journey and how TAP has helped.  We are so appreciative of their candor and engagement in TAP Unlimited.

December is the perfect time of the year to share with others the good times and the blessings we have received throughout the year. Let me do that now. 

My husband Russell was diagnosed earlier this year with PPA, primary progressive aphasia. His health records showed no signs or symptoms of a stroke. We were told that the condition only gets worse, ending in the loss of the ability to speak. We felt hopeless. 

However, suddenly a new TAP group was introduced which meets each Monday at TAP in Cary. 

What a blessing! At present there are about 8 caregivers and 8 loved ones who attend. The group allows both patients and caregivers to discuss and share their joys and concerns. The beauty of the group is that each one is able to see that they are not alone and can readily understand the pain and suffering that others are enduring. However, the group laughs a lot and we give tips to each other about how to cope. 

The drive from Raleigh to Cary is well worth it for the boost the group gives to both of us.  It is truly a blessing to us and we are so grateful to TAP and our new friends.  Come join us!

Good News Travels by Word of Mouth

– Sherron and James “Butch” Williams –

October 31, 2012 was the beginning of a new norm for our family and especially my husband Attorney James “Butch” Williams. We were blessed to learn about Maura Silverman and TAP through my daughter’s close friend Alexis Greene. Olivia, our daughter, shared this life altering experience with Alexis who then shared that her mom also had a stroke. 

We are so thankful for God’s timing. Alexis was able to give her personal insight, hope, and validate Olivia’s concerns and feelings. Within days after the Butch’s stroke, Dwayne Greene, Alexis’ dad called me. He said, “You don’t know me, but our daughters are friends and I know your husband. My wife, Kim, had a stroke so I know what you are going through. If you ever need encouragement, a sounding board and more importantly resources, I know the person and place you should call.”  

That was the beginning of a new friendship for life. Dywane proceeded to tell me about Maura and the work she does for people diagnosed with aphasia. He said she was very busy and did not know if Maura could take us on as clients. However, when I called Maura, Dywane had already spoken to her and she immediately asked, “When can I come and evaluate your husband?”  

Maura came within days. She was heaven sent. I had never met anyone like her. Her passion, knowledge, and heartfelt emotions about what the client and their family are going through were unmatched. Her enthusiasm and excitement about how she could help Butch was nothing less than God sent. My friendship with Maura and the respect we have for one another has only continued to grow over the years. It started with her visiting our family at our house and her leaving my neighborhood and getting a flat tire. I changed the tire for her. She never looked at me quite the same after that.  

When Maura agreed to take Butch on as a client, the light at the end of the tunnel started to get brighter. Butch is a criminal defense attorney who has a passion for trying cases. He’s always loved a good fight in the courtroom. Additionally, he is a Sports and Entertainment attorney, was a professor at NCCU School of Law, and is very supportive and active with organizations that help local youth.  

As you can probably imagine, suffering from a stroke that impaired his speech abilities was devastating. Butch was no longer able to try cases, to speak in public, to recruit athletes and to express his everyday concerns and joy. Butch was constantly on the move from NFL games, Super Bowls, All Star Games, concerts… you name it, he had his hands in it.  

After the stroke and therapy with Maura, we decided to go to Chicago for some intense therapy, 8 hours a day, which was great. However, it was imperative that once we returned we continued attending TAP so that Butch would not digress. We continued with Cary’s TAP group until they started a group at Duke Regional which is much closer to our home. Butch loves the extended family and life long friendships that he has developed over the years.  

I guess my article is really a testimony about TAP being an important part of our lives, how God extended His grace and mercy through TAP and the wonderful people who work and volunteer there. 

Butch is back in the courtroom sitting at the table advising his attorneys, traveling on his own, has finally decided to download UBER, and is back speaking to students and clients. Although it is not the same as before, he’s “still in the game” as he would say. 

Thank you TAP for your love, never ending support and friendship. 

– Butch and Sherron (“The Wife” as he calls me)  

MERRY CHRISTMAS FROM THE WILLIAMS FAMILY

From the TAP Home Office:

“Hey, it’s Butch…I know this friend/guy/young lady/etc. who had a stroke.  Let’s help them.”  This is the phone call I receive every month or so from TAP client, advocate and supporter, James “Butch” Williams when he hears of someone who is out in the community starting on the road that he traveled years back.  With the incredible family Butch has, he was blessed with abundant love and support, but he also knows how frightening and isolating aphasia can be.  His commitment to connecting others with aphasia, providing them hope and guidance, and directing them towards services is truly a gift.  His own personal drive to return to the courtroom, to his sports work and community service work reveals values consistent with those on TAP’s wall: Hope, Purpose, Determination and Engagement.  Winner of TAP’s Kim Riley Life Participation Award, Butch accepted every challenge, every strategy we could, collectively, think of and has done this stroke recovery journey with persistence and gratitude.   

It’s not surprising that the force behind this great man is a great woman. Sherron Williams, “the wife” as she is lovingly introduced, embraced TAP’s mission from day one and has been consistently supportive of the organization.  From inviting dozens of people to TAP fundraisers, generously sharing our stories and even making and wearing a “Got Aphasia?” scarf for awareness,  Sherron has been a blessing to TAP, and to me personally.   Her guidance and counsel is genuine and filled with faith that our purpose in this community is essential.  She has always been there to fill me up (quite literally, as you will learn in this story) and I know, without question, the blessing it has been in my life.   

Thank you to Butch and Sherron for sharing their aphasia/TAP story.  And, by the way, if you ever want to know if this charismatic attorney is in your group…wait for his arrival and the group’s collective chant of “Buuuuuutch!”  (TAP:  Sometimes you want to go, where everybody knows your name, and they’re always glad you came!”)  

Goal Setting and Realization

– Ben Gill –

On July 28^th 2017 I had a TIA at work. My coworkers called 911 and I was taken to REX hospital but my symptoms were no longer present. I was a very healthy, active and fit 56 year old man who had no known risk factors or family history of any serious condition. Even though my coworkers reported all of the FAST stroke warning symptoms, my apparent health and fitness level became my demise and the hospital sent me home. I had a full ischemic stroke that evening while alone at home. Somehow, I was able to call my wife who was in Ohio. She called 911 and was able to stay on the phone with me while help came. Without knowing the time of the stroke I was not eligible for the TPA. Knowing that the stroke could have been prevented or even mitigated has been very painful so we share this story with as many people as we can. Never dismiss the warning signs and demand additional tests if there is even the slightest concern. 

The stroke affected a significant part of my brain. I was unable to swallow, speak or move my right side. Even my voice was gone. I was transferred to the Wake Med inpatient rehab program where I stayed for seven weeks. The community of providers at Wake Med was wonderful. The therapists and technicians inspired me to never give up, to hope and to never set limits to my recovery. Michelle, the speech therapist, helped me believe in myself and encouraged me to pursue my goal of going back to work. She introduced me to TAP and after being released from the hospital I became part of the TAP family. 

TAP has played an import role in my path to recovery. The back to work group has provided support and inspiration and I am grateful to every single of its members. I’m in debt to Tisha and Maura for their constant encouragement and engagement. 

I am also fortunate to have a supportive family, a dedicated and amazing wife who has been a constant advocate for me, an employer who has accommodated to my needs, not to mention access to great therapists from Steps for Recovery (Abbi-Speech, Julia-OT and Brynn-PT) for almost a year and a half.  

Today, I have achieved several of my goals set back during my stay at Wake Med. I have begun to run again, I am playing my guitar and I singing (not near as good as I used to but good enough to be able to enjoy it again). I am also able to swim, work out in the gym and have gradually increased my hours at work for the last year. On January 2020, I will go back to work full time. My right arm has been very slow in responding and my speech has a way to go, but neither one of those hurdles has kept me from moving forward. My wife and I love to travel and last September we achieved one of our goals and made it back to the highlands in Scotland and for Christmas this year we will join our daughter in Spain. This has been a really hard journey, but with the support of so many incredible people around me, I see no limits to my future. 

From the TAP Home Office:

I was so thrilled to have received this nomination from Tisha, our Group Leader for the Back to Work Group!  She emailed me right away and said “We should ask Ben!  He has worked hard and focused on his goals…and will always say “not yet” instead of “I can’t.”  It’s so true.  Ben and his wife, Carolina, were, from day one at TAP, looking for the positive.  They were determined to look at this stroke and say, “Not today, stroke…not today!” 

Ben modifies as he needs to for activities he enjoys and that provide him with purpose…this is the definition of the Life Participation Approach.  And stay tuned, as we plan to “TAP” into (all pun intended) Ben’s musician skills and passion in 2020!   

At TAP, Nothing is Impossible

– Written by Mark Azzarello –

I saw a lot of time at TAP, 4 weeks upon week. 

I reading was impossible when I was first time there.  I was given the tape of learning to the book was first.  I was just non read. I after tape the I was ready a short form of the book.  I could make out a rid of the book.  I could see if I read a little. 

The teacher opens conversation about was is happening in the book. She was looks at you to join in talking and answering questions.  I then I realized I would and understood the book. 

On other day the music day – I became to relax. I could feel my right side, not the left side of my head. It loosely restored with music, ability with where is was. I felt I took music and song with real words. 

Wednesday TAP worked with other of people conversation.  At table of others, teacher had everyone talk.  No matter how bad, started topics, being afraid anyway. 

She encouraged not to give up. She shows other like – write, gesture, draw, ways to understand you!! 

I left me brave with teachers. How to slow down talking. They will help me try! TAP help me to open up to life. I give shown yourself and live again. 

From the TAP Home Office:

There is some phenomenal work in the area of mindset in education by Dr. Carol Dweck.  She discusses the differences between a growth and a fixed mindset, and how the affiliation of oneself to this frame of reference can influence your ability to make marked change.  In the face of challenge, some avoid and perceive no way around the barriers (i.e. fixed mindset); while others allow it to fuel their actions, breaking through to meet goals they set for themselves (i.e. growth mindset).  Personally, I have become passionate about this area as it relates to rehabilitation and recovery.  Encouraging to those of us who often believe in people more than they can currently believe in themselves, this concept gives us hope and a jumping off point!

When I met Mark, it took me a total of 3 minutes to realize what his inherent mindset is…. Growth!  He has been to 3 Learning to Speak Aphasia Trainings, practically every group TAP offers, and is the complete opposite of passive in his recovery from stroke.  His nature is to challenge himself, ask for assistance and feedback and all the while, encourage those around him.  Mark appreciates this community at TAP and makes those of us who serve feel so good about the impact we are making.  Enjoy Mark’s story and learn from his determination.  You will clearly see aphasia’s influence on Mark’s writing…read it with amazement of the brain’s ability to express meaning and reorganize with function.

From Client to Volunteer: A Man with a Mission to Serve

– Wyatt Nicholas –

As told by Wyatt to one of the WakeMed group leaders: 

Wyatt was a 38-year-old project manager who travelled frequently for work when he had a massive stroke 8 years ago.  The stroke caused partial blindness in both eyes, and aphasia.  Two months after Wyatt’s stroke he was evaluated for surgery at Duke hospital when they discovered that his affected arteries had healed on their own.  

After leaving the hospital, Wyatt focused on exercising and losing 50 pounds.  He continues to walk and lift weights to maintain his fitness.  Wyatt believes that everyone should focus on fitness to live a healthy life, whether they have had a stroke or not.   

Wyatt also practiced reading and writing for hours each day on his own.  He went to TAP groups, learned to use technology to help him with spelling and writing, and eventually felt that he was ready to “graduate” from being a WakeMed TAP group participant.  Wyatt reached out to group leader Lina and offered to volunteer at the WakeMed TAP group.  He helps plan lunch outings for the group, assists clients in getting to the meeting space from the lobby, helps with activities, and more! 

Currently, Wyatt serves on his homeowner’s association board for his condominium complex, attends and volunteers at church regularly, exercises, and hangs out with friends and family, in addition to volunteering at the WakeMed TAP group.  Wyatt feels like attending church services has been a nice way for him to see continued improvement in his speaking, listening, and reading skills since his stroke.  Because many parts of the worship service are the same each week, he can see improvement every week as he participates.   

From group leaders Heather and Lina: 

Wyatt consistently spends his Wednesday afternoons helping the WakeMed aphasia group.  He always has a smile and friendly word for the clients.  Wyatt’s help transporting clients from the drop off area to the meeting space is invaluable for getting group started on time.  He is the WakeMed wheelchair wrangler for those who don’t bring one with them but need a WakeMed wheelchair for the long distance!  He’s also our “Google go-to” guy – whenever we have questions about something that we can’t figure out he gets on his phone and finds the answer for us.  It shows every time Wyatt volunteers that he wants the group members to continue to challenge themselves and succeed. 

From the TAP Home Office:

When you think of a stroke, what age group naturally comes to mind?  70’s, 80’s…perhaps a grandparent or elderly neighbor?  Sure, TAP has clients that are well seasoned and have found themselves on an aphasia journey during their retirement years…but our average age is actually 47 years old!  Yes, you heard me (read me) right…47!  With clients as young as 18, several in their 20’s and early 30’s and many in mid-life, TAP understands the devastation of role changes and the high priority these individuals put to returning to work and to meaningful social engagement.

Wyatt’s stroke and subsequent aphasia had him challenging himself as a TAP client, but he didn’t stop there.  He came back to us…but this time as a volunteer.  Verbally fluent and understanding that challenging his speech by volunteering was only one of the benefits of being a part of a TAP group in this capacity.  Wyatt is now an integral part of the functioning of this group and you will love hearing his story. 

Thank you Wyatt!  For all you do!

Storytelling Royalty

– Ken and Beth Corsbie –

From Ken:

When I first received an invitation to the annual “Gimistory” storytelling festival in the Cayman Islands, I didn’t want to go and I told TAP that I didn’t want to go. I had told stories there 21 times and I didn’t want to go and not be able to perform the way I did before. Peter, one of the group members, said he would treat it as an opportunity to tell people about aphasia and it stuck in my brain. I thought, well, I can do it for TAP. I was concerned about the physical aspects of travel, but I was assured that the airlines would help with the wheelchair. I was still afraid of travel. 

I didn’t want to go but decided I would go and show them. People might have never heard of aphasia and I could introduce it to them. My wife agreed to help introduce me. My friend Henry, the Director of the Cayman National Culture Foundation, had said all along that I need not tell. Henry and I had worked together in the 1970’s and travelled throughout the West Indies performing Caribbean poetry.  I chose 6 or seven poems to work on if I did decide to tell.  

I was pleased that my fellow storytellers and the audiences treated me like royalty. These international tellers kept encouraging me. One of the tellers has a son with aphasia and she spoke about how I inspired her. 

When we decided to go, my wife quickly arranged travel. We were so impressed by the assistance that the airlines provided with the wheelchair, meeting every flight and providing help with connections, and to the front of the line for customs. With the amount of people with stroke, it is important to know that wonderful assistance is provided. This was one of the things that was holding me back from travel. Having gotten the wheelchair, we were met by the director of CNCF. 

The first night we went to a review type play that a version has been going on for about 25 years. We stayed at a good friend. The next night we went to a party at the home of a good friend and that is when I was permitted my first performance. This was very softly, I was so nervous about performing, but here at the end of it, the audience gave me a great response. This was probably the first time they were hearing someone with aphasia. I knew then that I would try to tell every night of the festival.  For the next two nights, I tried but was nervous. The audience gave tremendous and spontaneous applause. There was improvement all of the time. Everyday I got an hour or two of rehearsal in locations such as the beach that we went to everyday.  

From day one down to the end, and all the while we were there, there was improvement all of the time. Why I went there was because of TAP and the encouragement of my colleagues.   

From Beth:

Despite the daily struggles involved in living with a loved one who has had a stroke, probably the main thing that brings tears to the eyes of a spouse is the knowledge that close friends and new acquaintances don’t “see” the person beyond the disability, but rather look away to avoid discomfort with difficult communication and often avoid the stroke survivor altogether. In addition to the “Speaking Aphasia” programs offered by TAP, the affirmation of self through social interaction is an important part of the support TAP groups provide. I have observed the highly skilled SLPs engage members and observed group members support one another through their communication challenges. The community of support provide by TAP has been important for Ken and me as we continue this journey together. TAP provides an opportunity for family members to sit with one another. When we look into each other’s eyes, we know that they know about the everyday ups and downs in supporting a family member with aphasia. 

Ken is a dramatist, storyteller and poetry performer well known throughout the English-speaking Caribbean. His career has been formed by creative and clever uses of language. His stroke in May 2018 has required him to relearn to speak as well as to find new ways to communicate. And yes, that course in mime in drama school does have a purpose. Ken has been encouraged by TAP to continue working on speaking and communicating. He looks forward to the groups he attends, and the encouragement provided by his fellow TAP members and SLPs. 

With the encouragement of TAP friends, Ken and I went to the Cayman Islands “Gimistory” storytelling festival. Ken helped instigate the festival, some 22 years ago and has been a featured teller at all of the festivals. When the director of the Cayman Island Culture Foundation and longtime friend called to invite Ken to Gimistory for 2019, he said Ken would not be required to tell unless he felt up to it, he could just be there and be venerable. We debated about going and declined the invitation thinking that the travel would be too difficult, and it would be better to have Cayman remember him for his previous performances.  

At the last minute we decided to go. We discussed the importance of making people aware of aphasia and the possibility of performing some short Caribbean poems that Ken had been working on and had performed for his TAP groups. Ken was determined to perform at Gimistory and worked several hours each day in preparation. At the first performance, Ken performed a poem with a longtime friend and calypsonian. His courage and dogged determination brought his close friends to tears. He was among Caribbean artists who love him and revere his contributions to Caribbean theatre and culture. The week of Gimistory was a celebration of life with aphasia as well as transformation and improvement through dogged determination, hard work and no fear.  

At each of the performances, I walked with Ken on stage and prepared the audience with “Ken and I have been coming to Gimistory for more than 20 years. Many of you have grown up hearing Ken tell stories at Gimistory every year. In May 2018, Ken had a stroke. How many of you know someone who has had a stroke? [Nearly everyone in the audience raised their hand.] You may know that sometimes stroke affects language, but not intellect. This is called aphasia. Ken has aphasia so he has had to learn to speak, read and write again.  So he will be using a script tonight. Ken wants to share some of his favorite poems from some of his favorite poets and friends.” Ken was embraced as “Caribbean theatre royalty” and in addition to a warm response from the audience received accolades from longtime friends and well-known Caribbean artists who know and “see” Ken.  

Throughout the trip to Cayman, we were thinking of TAP and anxious to share our experience with the group who has been so supportive an encouraging. On the final performance, Ken wore his TapTastics t-shirt in tribute to the group that has walked with us on this journey. 

We are grateful for TAP and the resources provided to our community of stroke survivors, their families and friends. TAP is a special and important resource and we celebrate the incredible and unique work that TAP continues to do. 

From the TAP Home Office:

Beth and Ken were the first 2019 nominees to say an emphatic “YES” when we asked them if they would share their aphasia story for this year’s 12 Days of TAP.  They would need to wait, however, as they were in the Caribbean at a StoryTeller’s event that…well, I won’t steal their thunder.  Read the story and hear how this legend made a remarkable return worth every accolade he earned! Further, hear how a care partner, a wife, learns to encourage, support and gently nudge in the pursuit of all goals. 

Thank you, Beth and Ken, for this story, these pictures and the video that brings us right along with you!  We are so grateful for your generosity.

I Have a Village

– Written by Tonya Flowers –

My name is Tonya  Flowers,  I have a nurse I have several strokes.  I am currently going to school at NCCU  For strokes. While in Instructors   information  regarding TAP. 

  I have been with TAP    For about About 2 and a 1/2 years. Tap has been a   Very instrumental in my life. 

I have a village,  My husband,  Immediate family, and TAP family. 

 It was very  Difficult to adjust   Leaving the job that you love and I financial responsibility put all my husband. I depression set in.  

 The  The very 1st time that I went to Tap  It was a blessing. I love the fact that we are able to Tap is a special family we help each other  What reading, writing 

pronunciation,  And current  new.   Me the most imparted important part is Fellowship  with all different backgrounds. 

From the TAP Home Office:

Sometimes you meet someone with aphasia who so desperately wants you to know that they know… they do everything they can to try to explain to you that they are still completely there, but just experience challenges in the expression of those ideas/thoughts/memories, etc.  At TAP and amongst our TAP family, it’s not necessary.  We see beyond the language struggle and are here to help you unmask your competency and reveal your potential. 

Today’s story is written by Tonya.  A nurse whose stroke derailed her career, but not her passion for nurturing!  Initially shy, Tonya has really come out of her shell in the last few years! She is always a bright light in group, encouraging of others, and great at using her strategies. She has volunteered to talk to PA students about what it is like to receive medical care after having a stroke from the perspective of a nurse, which is so unique. We look forward to her enthusiasm in group and her support for her fellow group members. 

Thank you, Tonya, for sharing your journey with us.  We love you!!

When We Connect, We Learn

– Katherine Mansfield –

At the beginning of 2019, prior to my first experience at TAP, I had never spoken to anyone with aphasia. In my speech-language pathology undergraduate courses, I had researched some of the different types of aphasia, but I had never had any personal experiences with individuals who have this communication disorder. 

During my first experience as a volunteer and student observer at TAP, I had the pleasure of observing the TAP Challenge Group with James, Tom, Don, Austin, and many more of my future TAP friends. Christine, the group leader, helped me better understand what aphasia really means and does not mean for these individuals as she educated the clients, their families, and observers of the group about how to use communication supports and led conversations to help improve the clients’ communication skills. 

Throughout my 11 months as a volunteer at TAP, I have come to understand that aphasia and communication disorders are more than meets the eye. Each of these disorders require individuals to connect and engage with one another in order to treat them. When we connect, we learn, and this connection piece is at TAP’s core. TAP believes in connecting individuals, their families, and the community with each other and the appropriate education and skills to help individuals with aphasia regain their communication skills. I can personally speak to TAP’s outstanding initiative and commitment to change the narrative of what aphasia is and is not, and to create a positive, long-lasting impact on the lives of everyone it affects. 

From the TAP Home Office:

One of the greatest things about being in this area of the Triangle is the connection we have with the Universities!  We are blessed to share our program with students from all areas of health and human services, from speech pathology to rehabilitation counseling to marketing/communication studies. The young men and women who volunteer often are learning about aphasia for the very first time, and watching their transformation is incredible. 

Katherine joined TAP as a volunteer, and was instantly loved by the clients, their families and the group leaders.  She demonstrates a caring and open communication style, and is receptive to all of the strategies people with aphasia need.  She has been invaluable on every project TAP has on its to do list, and has even helped us obtain new and exciting collaborations in the community.  Thank you Katherine, for sharing your time, talent and passion with us.

A Decade of Determination

– Joan English  –

From Maura English Silverman:

As Founder and Executive Director of TAP Unlimited, the honor of sharing these 12 Days of TAP stories fills my heart with faith in the need for our services, and gratefulness for the community who allows it to continue to thrive.  When individuals learn of the fact that my own mother has suffered a stroke and lives with aphasia, they often say “Oh, so that is why you started the program, right?” or “Oh, she’s lucky to have a speech therapist in the family” (she actually has two!)…but here’s the truth.  My mom was TAP’s biggest fan. Having started the organization the year my dad passed away, it provided her another place to give of her passion, her time and love.  She volunteered at events, shared every small achievement and encouraged me a million times when I felt frustrated by the challenges of running a nonprofit.   

Until the cold winter Thursday afternoon when everything changed.  As my son, Austin, said so well, “TAP was always something that I just saw as my Mom’s job, until ten years ago when my grandmother became one of their patients. I was, from there on, dedicated to my Grandma and TAP on a personal level.”  It’s analogous to the cobbler with the broken shoes.  I know how to help others and their families…but how do I do this?  How do I practice what I preach?  How do I believe in a Life Participation Approach to Aphasia when that Aphasia was in my own backyard?   

Well…I leaned in.  I leaned into my family, my friends, my colleagues and my “second family”, TAP.  We faced this life altering curveball with the tenacity we’d had as a model all our lives.  And today, 10 years to the day of my mom’s stroke, we are still standing…. Oh, don’t get me wrong…we stumble.  But we lean in again and gain support.  We hope, as a family, that our experiences give you strength and faith in what we created in TAP.   

Austin once again summed up my mom’s journey with the wish we have for each of you: “TAP has provided her with the opportunity to regain her strength and build relationships with individuals with similar experiences.”

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. 

Thank you for allowing us the opportunity to jump back into the 12 Days of TAP on the 10-year anniversary of a stroke that impacted a person, a family and an organization.  It is an honor to walk this journey with each of you.   

No Time Like the Present

– Wofford Humphries  –

From Wofford:

I had a stroke about 13 years ago.   

At the time, I did physical, occupational and speech therapy. I was told that any recovery that I would experience would occur in the first 6 months to a year and that recovery after that was very unlikely. 

About a year ago, I decided to try speech therapy again and made some progress. After a couple of months, she introduced me to TAP.  

I started once a week with Aphasia Day on Wednesdays. I made so much progress and met so many new friends that I now attend TAP sessions 4 days a week—including book club and singing occasionally with the singing group TAPTastics. 

I highly recommend that anyone afflicted with aphasia and their families to explore all available at TAP. 

From Wofford’s son, Choots:

Our family was unable to put a name to my father’s aphasia until TAP.  We all understood the effects of my father’s stroke and we all lovingly worked hard over the many years to help him cope.  However, this was often in a counterproductive way.   

TAP has opened our eyes to all that is possible for people afflicted with aphasia and their families.  My father and our family have found tremendous support from a community of trained staff, volunteers and others working to overcome the effects of aphasia.  The generous amount of acceptance and empathy has empowered my father to take charge of his recovery and to challenge himself every day to consistently try new things and subsequently accomplish more.  

 We are very grateful for TAP, and we are especially grateful for the ‘Learning to Speak Aphasia’ program that provides education, training and support for families. 

From the TAP Home Office:

I love today’s story for so many reasons… first of all, the grit and courage it took for Wofford to do a video Holiday / 12 Days of TAP message!  When Wofford and his son, Choots, came to meet us at the TAP office, they were surprised to hear of the hope we preach years and years after a person’s stroke/onset of aphasia.  They had been told that he had made the most improvement that he was capable of, and yes, was so open to trying TAP out for the programs we offer to individuals with aphasia and their families.  They attended the very next Learning to Speak Aphasia training, as well as Aphasia Day.  Well, it wasn’t long until we all noticed the improvement in Wofford’s speech and ability to access the words he wanted to communicate.  He was being held accountable by the group leaders and making significant gains. 

Deciding to create his entry with a video is testament to Wofford’s pride in his accomplishments, as well as his ongoing efforts to challenge himself.  We are so grateful for the words from Wofford and his son. 

Volunteering with TAP  

– Anna Bess Brown and Eric Hale –

From Anna:

I was moved to volunteer with TAP when I learned about aphasia through my work with the Stroke Advisory Council and Justus-Warren Heart Disease and Stroke Prevention Task Force.  

I attend the WakeMed group and book club and am inspired to see the participants support one another as they get better and better. I am amazed watching Lina and Heather teach. I feel privileged to be part of the journey of folks who are living with aphasia. In fact, I love it so much that I convinced my husband Eric to volunteer also. Eric and I appreciate TAP because it is a needed service that supports people as they work to understand how aphasia affects them and to communicate.  

From Eric Hale:

I work for Principled Technologies, which has a wonderful sabbatical program that allows us to give a dedicated week to the charity of our choice. When my sabbatical was coming up, Anna Bess asked if I would consider volunteering at TAP. I am so glad I did!  

I have no skills for dealing with people with aphasia. However, I do know my way around a database and that was useful. I spent my time figuring out how to generate reports for TAP’s donors that their database was not generating in a reasonable way. In the week I was there, we were to figure out three of them.  

I was not sure what to expect when I showed up. However, as I say in the video, there was so much joy and laughter. I am a singer, and the singing made a big impact on me.  

Aphasia still scares me, but I have seen how people can get through it. TAP provides a wonderful service and really opened my eyes. 

From the TAP Home Office:

Like many nonprofits, TAP Unlimited could not do its work without the generous donation of time, talent and passion by volunteers.   Today’s 12 Days of TAP story comes to us from two volunteers that got to us via different routes, but have both been changed by the work that TAP does for the aphasia community.

Anna Bess Brown understood the etiology of aphasia, well versed in stroke and rehabilitation/recovery.  So it wasn’t a surprise to hear that after one day of sitting in at the WakeMed group…she was hooked! 

Her husband, Eric Hale, however, is a brilliant techie with little to no initial understanding of aphasia.  He appreciated our needs for database work, but was reticent about getting involved in this mysterious communication disorder.  As you will see, however, from the video created by Eric’s company, Principled Technology, he heard the laughter and was moved by the engagement of the TAP client groups.

The Renewed Joy TAP Has Given Derry 

– Derry F. Washington –

Derry Washington was living life to the fullest when out of nowhere on January 28, 2014 he suffered a Massive Stroke. To God be the glory for sparing his life.  The stroke left him with hemiparesis and Aphasia. 
 
He was surrounded by his family and friends that helped him survive his new reality.  Derry was transferred CICU to Intensive therapy at WakeMed for six weeks, then discharged with no home to go to.  At 55, he was admitted into the nursing home, bedridden and wheelchair bound where he stayed for 90 long days. 
 
Later, his ex-wife assisted him and brought him home with her.  Prior to the stroke, these two had been inseparable; life happened and they went their way.  Lori heard about Derry’s stroke and was determined to help this good man.  This shows that good things happen to good people.  And, TAP is definitely the finishing touch Derry needed.   

As they were in search of therapy programs that would positively impact Derry’s life, one of Derry’s therapists suggested TAP to Derry.  Marsha Rodriguez expressed how beneficial Tap would be for Derry and his family.  Boy was she right! 
 
Derry and Lori Washington, through TAP, have been afforded a renewed joy. Derry has made friends with people that understand him, accept the beauty of who he is, and respect him as an individual and not see him as a “handicapped man that walks with a cane that people think cannot talk well!” TAP gives this man a great confidence and affirmation that his healing is within his reach. 
 
Lori has a very demanding job as the Owner and Operator of several Funeral Homes.  But, TAP allows her to be able to leave Derry with his new family while she works.  She can return to pick him up and see the joy in his eyes as he appreciates each TAP meeting the participants share together!

Thanks to the facilitators, therapists, program coordinator and all involved.  Grace, Peace, Healing and Blessings during this Merry time of Year. 

– a conversation with Derry submitted by Rev. Dr. Lori Chappell-Green Washington  

From the TAP Home Office:

Today is the first day of our 12 Days of TAP campaign!

It is only fitting that Derry is the one to kick off this exciting tradition that we have here at TAP Unlimited.  After all, Derry has been attending the WakeMed Wednesday Aphasia group for the longest of any of the participants and sits at the head of the table… the “head of the TAP WakeMed group Family”.  Derry cares deeply about his TAP family, making new clients feel welcome and worrying about anyone who might be absent on a particular day.  He has a wonderful sense of humor and an infectious smile.  And his fashion sense has earned him a title of a dapper-Derry! Derry’s wife, Lori, and their family have been consistently supportive of TAP, jumping at the opportunity to share today’s inaugural story. 

Thank you Derry and Lori for your faith in our program and passion for our mission!