Caregiving Support

– Rozanne Banicki –

My mom, Karen, had a stroke three years ago that left her unable to talk.  This has been a huge learning experience that has had its ups and downs.  When we moved to Durham in April of 2017, mom continued her speech therapy with the therapists at Duke.  The therapists have worked hard to make our communication skills better.  While doing this, they saw that I was trying to go to school and take care of mom and the stress was getting to me.  Early this year, my mom’s speech therapist asked me if I had looked into the Triangle Aphasia Program for my mom; they saw this as a benefit for both of us because the program can also help the caregivers.  We interviewed with Maura and we were blessed to be accepted to participate in the program. 

At first it was hard to get mom to go to the group, but the more she went to the Saturday group, the better she got to know everyone, and the more she wanted to go to the group.  This excited me because she doesn’t usually like to leave the house; now she had friends with whom she can connect.  Since I had to drop a couple of classes, mom started to attend the Aphasia Day in Cary on Wednesdays.  She was hesitant to attend at first, but when she arrived, she saw a few faces she knew from the other group and she felt better.  I think the music is helping to give her some confidence.  Even though she can’t talk, she has been humming to the best of her ability.  I really enjoy seeing a smile on her face when we go to TAP events.  She loves when others recognize her and say hello and she will now go up to people and give them hugs. 

This group has also been a blessing for me.  When I take her to group, I can focus on my school work and other tasks I have to take care of.  We have had a couple issues come up that I did not know how to find the right people to help and Maura and the staff have been very helpful at finding other support for us.  I don’t know what I would do without the support we have gotten from Maura and the whole TAP family. 

Unexpected Detours

– Robin King –

 A rare early December winter ice/snow ‘event’ is forecast to impact the RDU area this weekend, but who can know for certain, and how does one prepare?  The grocery, hardware, gas station and adult beverage stores will all  benefit, we know, but where the snow or ice will fall (if at all) is anyone’s guess.

Similarly, who knew that Robin’s life journey would take this  unexpected detour leading to TAP?

After experiencing a seizure 24  years ago, Robin learned he had an AVM in his brain. Due to its’ size and location, removal was not ideal, so medicine and periodic medical monitoring provided  best course of action, all with little consequence to day to day family activities and experiences.

Fast forward through a rich and full life to six years ago, when  Robin suffered  an aneurysm/stroke.  He was very fortunate in his recovery:  returning to full time work in his beloved construction sales field, completing and moving to the “empty nest” house,  and walking his only daughter down her path to marriage and happiness.  An upbeat, determined, and positive outlook made it all possible!

That “ happily ever after” picture dissolved  two years ago when Robin’s AVM ruptured, resulting in a new and very different reality of physical and cognitive challenges, including the-never-heard-of-before Aphasia.  For the next year and a half,  multiple surgeries, procedures, therapies, treatments, outreach, group sessions, social work interactions, programs  and a LOT of professional wisdom helped Robin make big strides in physical progress, but much less in his ability to communicate effectively.  When, six months ago,  it began to seem that all resources to continue Robin’s recovery journey were exhausted, we fortuitously were introduced to Maura and TAP .

Robin enthusiastically attends the weekly Aphasia Day Group, and is already showing improvement in verbal skills,  confidence and self-esteem.  In fact, he is so enthusiastic about TAP, that there was no question of his choice to sing with his TAPTastic comrades rather than participate in a golf experience – on a beautiful Carolina Fall day! 

We know that communication is, and will be, a challenge for Robin, but life is much richer today due to TAP’s culture, philosophy and real-world  approach. He has quickly bonded and identified with the extended TAP family, feeling welcomed and valued. Like the commercial says: Priceless.

So, this season, we honor TAP.

With Gratitude, Michele and Robin King  

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From the TAP Home Office:

Robin and his family came for the TAP Consultation like any other family,…understanding the basics about aphasia and learning, firsthand, the impact that this frustrating communication disorder has on an entire family… but they also brought an open and receptive ear for the philosophy of TAP and appreciated the hope for continued progress as long as Robin was willing to work hard. And word-hard he does!! Robin doesn’t shy away from a challenge and requests cues so that he can maximize what he can express.

My favorite observations of Robin in TAP Unlimited programs, is his initiative… he arrives first, and wheels himself over to set up the table, anticipating who will need what and what materials will aid in the conversation. When people start arriving, Robin greets them all individually, stopping only briefly to put his coffee cup down on the table. He is generous with his laughter and smiles and has joined the TAPTastics both in practice and in concert! We couldn’t be happier that Robin and his family have joined us at TAP and appreciate all they bring to the family!

The People Are the Reason

– Heather Garrabrant –

About two million people in the US have aphasia.  That’s more people living with aphasia than living with Parkinson’s disease, ALS (Lou Gehrig’s disease), or Multiple Sclerosis, yet about 85% of people in the US do not know what aphasia is.  About one third of strokes result in aphasia.  The average age of TAP clients is 47.  These statistics are eye opening.  But statistics aren’t the reason I am passionate about Triangle Aphasia Project.  The people are the reason. 

TAP clients send each other birthday cards, visit each other if someone is in the hospital, work hard to raise funds and awareness of aphasia, work very hard to participate in their lives and communities while having aphasia, and TAP clients give smiles and hugs generously.  TAP staff, volunteers and group leaders share group activity ideas, cover for one another when schedule conflicts or illness occur, and support each other and the clients and their families in so many ways.  The people are the reason I love TAP.

I began working for TAP in 2009 before the Cary office opened.  I was thrilled when Maura asked me to lead an Aphasia Day at Marsh Creek Park, and a TAP gathering at the IHOP in Cary another week.  Working for an organization dedicated to the Life Participation Approach to Aphasia (LPAA) is a dream job for me as a speech-language pathologist.  Currently I lead the Clayton Aphasia Group, help lead the WakeMed Aphasia Group and Book Club, and serve on the TAP Development Committee.  I enjoy substituting for other group leaders when possible to enjoy the dynamics of other groups and meet more of the amazing TAP clients and their families.

When I am not working with TAP, you might find me running on the greenway, hanging out with my family, watching sports, reading, or traveling.  I’ve always loved this quotation from Arthur Ashe, and feel it applies well to TAP:  “Success is a journey, not a destination.  The doing is often more important than the outcome.”

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From the TAP Home Office:

One of the most amazing benefits of starting TAP has been the chance to connect with incredible colleagues across the Triangle and beyond. Heather has been involved in TAP for many years and her enthusiasm and passion for the organization has never waned. As a matter of fact, if you want something done…ask Heather. She is a consistent and fierce advocate for those with Aphasia and for those who love them.

I get little “time off”, but on a recent trip with my mind pulled and my thoughts with my mom back in Raleigh…I received this picture. Heather was visiting with my mom, bringing along her furry BFF to add extra love! A true friend, indeed. I love you, Heather and am proud to work along side of you on every TAP goal!!!

My Definition of TAP

– Joel (Kevin) Coleman – 50 year-old Stroke Survivor –

I had my Ischemic stroke on July 15^th, 2017 critical part my recovery was getting the TPA in the 4-hour window of time. Medical Staff at two hospitals REX, UNC saving me some from normalcy. If not all there, but I know I was spared for a reason… to be more IMPACTFUL.

After going to speech rehab for 6 months. When going to REHAB the Speech Pathologist know told me about TAP. I been going for a year now. I was pick for a Study for UNC Electrode Stimulation therapy Jan. – June to spurned building your pathways back for your Language part of a brain.

TAP It’s my extended-family they are helping me to keep my dignity through this trying part-of-life. All the different groups for Survivors and their Families with various things to do to help get better and coping every day. All the survivors have a common thread of wake-up to your life alter in a way never thought about before. Everybody’s journey of recovery it’s different. But initial feelings of not knowing where your life journey will go after, acceptance of the cards you been dealt. I feel a kindred bond with every survivor I meet in the travels around me.

Mrs. Silverman It’s my Angel on Earth more people’s Angel too. I know she’s been a champion for the voiceless for a long time that why I wanted to do MORE to help getting word out about APHASIA and STROKES.

Aphasia not apart your intelligence you are still you it’s communication breakdown in your brain.  TAP to guide my heartfelt feeling of gratitude and have aspiration to get better every day. TAP always be part of my existence from now on.

TAP is a resource that every communities should have to bridge the gap from hospital to rehab to therapy and lifetime recovery. Hope, Purpose, Determination and Engagement IT’s TAP.

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From the TAP Home Office:

An organization should have a mission, a strategic plan, corresponding budget, etc. etc….but it also needs a set of core values. These guiding tenets make up the foundation of every activity that the participate in and every program they create. At TAP, those values are written in big print across the wall in our home office: PURPOSE, DETERMINATION, HOPE and ENGAGEMENT!

Today’s TAP hero TOTALLY lives those values. “Joel” (Kevin) embraced TAP’s philosophy from day one, not just for his own recovery but constantly asks how he can use them to help others. His voice (spoken and in song) is passionate and deliberate in this meaning. Click here to hear Joel sing to his daughter!

Thank you, Joel, for sharing your story and yourself with TAP Unlimited! We love you!!

Stumbling Into Inspiration

– Amy Davis –

In my lifetime, I have realized that it is possible to stumble upon opportunities that open up a whole new world in ones’ journey.  This is what happened to me when Maura invited me to join the TAP family.  What I have experienced during my one year at TAP, has filled my heart and provided immense gratification in my professional work.  I am surrounded by people eager to make a difference, who struggle, who love.

Being the Office Manager, does not lend itself to actual group participation however the conversations and laughter, drift to my office allowing a glimpse of the magic that happens in these groups.   Our clients have motivated me to be brave and conquer fears.  Our clients have inspired me to keep trudging regardless of discomfort.  Our clients have taught me to step outside my shyness and limitations and see the possibilities.  

These clients, who are so heroic, are supported by group leaders, volunteers, caregivers and our board.  And of course, there is Maura… who challenges me daily, makes me roar with laughter and shed an occasional tear while sharing her first-hand experiences.  Her passion creates passion.

TAP’s integrity, empathy and true family values are what makes TAP a safe place for clients and their loved ones.  This commitment to continued services for clients and their families, while raising awareness to those who have never heard of aphasia, keep us motivated and forever grateful for the support others have provided.  May the journey continue…

Wishing you and your family a wonderful holiday season!

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From the TAP Home Office…

Once someone told me that if you put something out into the universe…tell it what you need, envision the success in it…then it will manifest itself. As a self help fan, who had witnessed the power of mindset…I was confident that we needed someone in this TAP staff position who could balance compassion with organization, patience with productivity and interest with initiative… and in walked Amy.

From day one Amy has made it her mission to get all systems on track (and On Trac), take things off my proverbial-plate and support all of the goals that TAP has to serve our clients and families. She has made all stakeholders a priority and shares the vision of what we can become as we grow. Amy may appreciate what she has “stumbled” into…but we are certainly the lucky ones!!

Thank you for joining the TAP family, Amy….

We love you!

The Phone Call that Changed my Life

– Tom Barrett –

TAP has changed me and helped me become a better person…

I had never heard of Aphasia until August 2015, when a lady called me to help her husband in his recovery from a Stroke. The wild thing about this is the person who called me got my name from a friend of a friend. Until then my experience had been caring for older folks with dementia. I never could have imagined how my life would change from that one phone call!

The person who I was helping and I, started to attend TAP. Right from the beginning we felt accepted, loved, understood and supported. You see, a family member or a care giver can have all the empathy in the world, but only a person who has Aphasia can truly understand what it means to go through life with Aphasia. Imagine knowing what you want to say, but not being able to say it. TAP gives people hope, encouragement, understanding, purpose and love.

TAP challenges you. TAP allows you the dignity to fail. TAP picks you up when you don’t want to go on anymore. TAP lets you know you are not alone. TAP shows you that your ability to communicate can and will improve if you keep showing up. TAP give your life back.

TAP also gives hope to your family members. Think about trying to communicate to your loved one and not being able to. Your spouse feels powerless, lost and hopeless. Then you start attending TAP and after time you see your loved one improving, laughing, speaking, and fighting. Think about the fact that a person with Aphasia has to learn to write again, very often with the opposite hand. They may have to learn the alphabet again, how to read and write their name. This has to be one of the hardest most sobering things to deal with.

Besides the hope, encouragement, and empowerment TAP provides for people with Aphasia, TAP gives care givers, loved one, friends, and family the ability to communicate with the person dealing with Aphasia. TAP enables people like me, who have never heard of Aphasia and is not a Speech Therapist the ability, knowledge and education to help our loved ones. Think about how powerless the people in the lives of a person who has Aphasia feels. TAP give us hope.

Finally having a stroke or a brain injury leaves the person with a very expensive medical bill. Hospital cost, speech therapy, physical therapy, occupational therapy, adaptive equipment all of these things add up. TAP allows our people to not worry about costs, set aside your anxiety of medical bills and focus on getting better. Costs are kept to a minimal and that gives people one less thing to worry about.

I could go on for days about TAP, but I will leave you with this; TAP works! Our little family is touching and changing lives all across the state. Our leaders are showing people in other states what works. TAP is the best thing I have ever experienced and truly feel blessed to be a part of the TAP family.

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From the TAP Home Office…

From the moment Tom became involved in TAP, first as an observer, then as a volunteer and committee member, it was clear that he embraced the TAP philosophy of “I can and I will”. He has used this inspirational foundation to encourage, or gently nudge, clients to do the very best that they can. Tom ensures that we don’t see that “I can’t” jar fill up and reminds people of their potential. His faith in our organization has evidenced itself by his generosity of time and energy to be sure that every event we put on is well attended and well funded! I know that he gets back as much as he gives and we are very grateful that he received that phone call!

Thank you for all you do, and all you are, Tom!!!

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“I Can” and “I Did”

Lin D’Antonio

My name is Lin D’Antonio.  I had my stroke on June 12, 2015 just five days after returning from a trip to England to visit family living there (not a picture of England, but Helen, GA).  It was early Friday morning, just about 3 a.m. when I woke my husband, Dominic, from his sound sleep to tell him we forgot to put out our trash and recycling for Friday pick-up.  But, for some reason unknown to me, Dominic couldn’t understand anything I was saying.  According to him, it sounded like gobbley-gok, incoherent and meaningless.  At first he thought I was having a nightmare and talking in my sleep, but realized I was sitting up in bed trying to relay my message about the trash pick-up to him.  He decided to rush me to hospital where I was given a scan and diagnosed as having a stroke and confined to hospital for 5 days. 

After my discharge, I went to speech therapy at REX in Cary and met Abby Simon, my speech therapist, who introduced me to and encouraged me to continue at TAP.  This was some of the best advice and encouragement anyone could have given me at that time.  I started attending various TAP sessions and am thankful that I did. 

Before my stroke, I was working in REX Cary for nearly 15 years.  I tried to return to work, but because of my Aphasia I was not able to work the mandatory 12 hour shift which was too long then and even now.  

In addition, English is my second language, Tagalog being my first language.  I struggled inside recalling and retrieving words and trying to translate them from one language to the other.  I found people thinking I had an English language problem and not Aphasia.  I also was surprised to learn that like me before my stroke, most people, even health care professionals don’t know what Aphasia is and never heard of it.   

TAP has given me the opportunity to build my confidence again while doing volunteer work every Tuesday and Wednesday where I find friendship, commitment, determination and hope.  I pray that one day everyone will be better and we will use the magic words “I CAN” instead of I Can’t.  

I would like to say “thank you” to TAP for bringing Aphasia to the forefront of State politicians and the legislature and making them aware of how many people are suffering from Aphasia.

And mostly, I would like to give special thanks to my family especially to my husband who has continually supported me throughout my recovery.

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From the TAP Home Office:

In every organization there is an individual who shines so brightly, not because the person requires the spotlight but rather…it is in their nature to warm others with their glow. This is Lin. Initially appearing meek and quiet, she quickly became indispensable to the TAP family…first as a client, then as a volunteer…and overall as a page-turning, smile-eliciting, support-giving machine! Amy and I could not do what we do without Lin’s initiative and passion for our mission. Thank you, Lin…for sharing your story, but mostly for sharing YOU!!!

Much love, Maura and the whole TAP family!