Fredy’s Story

From the TAP Home Office: Join us in welcoming our first Spanish language 12 Days of TAP story from Fredy. You can find the English translation of the interview below. 

Hola Buenas Noches.

Cual es tu nombre? Fredy  

Como se llama tu esposa? Gretis

Cuantos hijos tienen? 2 hijos; Valerie y Diego

De que te sientes agradecido?

Agradezco mucho por estar vivo, por poder compartir con mi familia, por poder comunicarme, y por caminar.

Gretis nos puede contar un poco la historia de Fredy?

Fredy tuvo un ccidente de carro el ano pasado que le causo graves danos, especialmente dano cerebral,

O lesion cerebral traumatica.

El ha mejorado tremendamente con las terapias y yo se que seguira mejorando. Estuvo 3 meses hospitalizado de los cuales 1 mes fue en un coma. Le operaron del cerebro y mientras en el hospital sufrio un accidente cerebro vascular (ACV). Luego le diagnosticaron con el problema del habla y comunicacion que se llama Afasia por lo cual no se puede expresar con palabras. Poco a poco fue mejorando y le dieron de alta a la casa. El recibio muchas terapias mientras estuvo en el hospital y despues en la casa. Cuando llego a la casa no podia caminar, no recordaba casi nada, y no podia hablar. El ha mejorado tanto que ya tiene la memoria perfectamente y hasta major que la mia. Ya puede caminar y se mueve independiente con el apoyo de un baston. Ya el hace cosas por si solo. Al principio, le tuvimos que habilitar un dormitorio abajo por que no podia subir las escaleras. Ya hoy en dia sube y baja las escaleras. El no podia identificar objetos ni seguir direcciones y ya lo hace perfectamente. Lo que no ha recuperado es el habla pero lo entiende todo. Tambien ya dice muchas palabras y algunas frases cortas que le salen espontaneas. Ya el puede responder con si y no cuando se le hace preguntas.

Que crees que le ha ayudado a Fredy? Alguna organizacion o  programa?

Yo no me puedo quejar por toda la atencion que recibio Fredy desde su accidente. Primero debo agradecer al hospital, a los doctores que lo atendieron y los especialistas y terapeutas que en aquel momento le ayudaron y que aunque Fredy no podia hacer mucho en el hospitalpor su estaado tan delicado le dieron las bases para la rehabilitacion. Cuando llegamos a la casa le dieron terapias todos los dias especialmente la fisica y del habla.  Estamos muy agradecidos con el programa de ustedes (TAP) que nos ha ayudado tremendamente en este largo proceso de recuperacion.

Que nos puedes decir de nuestro programa (TAP) Triangle Aphasia Project?

Yo pienso que es muy bueno, me gustaria que creciera mas, y que se conociera mas, ya que es el unico sitio para que personas como Fredy puedan interactuar y socializar. Yo se que hay muchas personas con el problema de Fredy, yo vi muchos en el hospital cuando iba a las terapias pero no conocen el programa. Seria muy bueno que ellos se reunieran para que uno al otro se motive y que entiendan que hay otras personas como ellos. Pienso que el programa no se conoce bien y seria excelente darlo a conocer y que las personas con problemas de la comunicacion tengan un punto de reunion. Nos paso con Gabriel, por ejemplo, que los conocimos a traves del grupo y ya el vino un dia a la casa con su esposa y pasamos una linda tarde. Yo pienso, que es muy beneficioso ya que ellos aprenden uno del otro.

Fredy a quien tendrias que darle las gracias por tu progreso?

Primeramente a Gretys, mi esposa, a mi por mi esfuerzo y ganas de recuperarme

Y luego?

A ti, Graciela y al programa TAP por toda la ayuda y el apoyo que nos ha brindado.

Muchas gracias por compartir tu historia y en nombre de TAP les deseamos que tengan unas Felices Pascuas y un Propero ano nuevo 2023!

 

In English,

FREDY’S STORY

Hello and Good Evening,

What’s your name? Fredy

What’s your wife’s name? Gretis

How many children do you have? 2 children; Valerie and Diego

What are you grateful for?

I am very grateful for being alive, for being able to share with my family, for being able to communicate, and for walking.

Gretis, can you tell us a little about Fredy’s story?

Fredy was in a car accident about a year ago that caused serious injuries, especially brain damage, or traumatic brain injury. He was hospitalized for 3 months, of which 1 month was in a coma. He underwent surgery on his brain and while in the hospital he suffered a cerebrovascular accident (CVA). Then, he was diagnosed with a speech and communication problem called Aphasia, which is why he cannot express himself in words. Little by little he was improving, and they discharged him to the house. He received many therapies while he was in the hospital and later at home. When he got home, he couldn’t walk, he didn’t remember almost anything, and he couldn’t walk. He has improved so much that I can tell he already has a perfect memory and even better than mine. He can now walk and move independently around the house with the support of a cane. He already does things by himself such as bathing himself and he helps a little in the kitchen. When we first got home from the hospital, we had to make sort of a bedroom downstairs because he couldn’t go up the stairs. Nowadays, he goes up and down the stairs as he wishes. He couldn’t identify objects or follow directions and now he does it perfectly. What he has not recovered is his speech, but he understands everything. He says many words and some short phrases that come out spontaneously. He can already answer with yes and no questions when asked. He has improved tremendously with the therapies, and I know he will continue to improve.

What do you think helped Fredy to recover so fast? Any organization or program?

I can’t complain about all the attention Fredy has received since his accident. First, I must thank the hospital, the doctors who treated him and the specialists and therapists who helped him at that time and, although Fredy couldn’t do much in the hospital due to his delicate condition, they gave him the basis for his rehabilitation. When we got home, he received therapy every day, especially physical and speech therapy. We are very grateful to your program (TAP) that has helped us tremendously in this long recovery process.

What can you tell us about our program (TAP) Triangle Aphasia Project?

I think it’s very good, I would like it to grow more with more participants and more classes in Spanish. I think people don’t know about enough. TAP has been the only place where people like Fredy can interact and socialize. I know that there are many people with communication problems, like Fredy. They just don’t know where to go. I saw many in the hospital when I was taking Fredy to therapy but they don’t know the program. It would be great if more people with aphasia get together so that they could motivate each other and understand that there are other people like them. I think that the program is not well known, and it would be a great idea to make it known in the community and that people with communication problems have a meeting place. For example, we met Gabriel and his wife, we met them through the Spanish group at TAP, they came to the house one day, we spent a nice afternoon together, they laughed, they ate and they learned from each other. I think these meetings are very beneficial to increase motivation, socialization and communication for people with aphasia.

Fredy who should you thank for your progress?

First, to Gretis, my wife, to me for my effort and desire to recover and to all my therapists but especially to you, Graciela, and to the TAP program for all the help and support you have given us.

Thank you very much for sharing your story and on behalf of TAP we wish you a very Merry Christmas and a prosperous New Year 2023!

Tisha Shah & TAP’s DEI Committee

The TAP Diversity, Equity, and Inclusion (DEI) Committee was formed to ensure that we take actionable steps to demonstrate how we celebrate and invite diversity and also to focus our commitment to providing inclusion, equity, and accessibility in all aspects of the organization. We believe each person in our community is wonderfully unique. We like to think our differences are woven together to make up the beautiful “TAPestry” that makes us a safe and welcoming space for all. We want every person who comes in contact with TAP to feel they are valued, respected, and honored for who they are. This includes group members, families, group leaders, board members, staff, volunteers, and community partners. Therefore, the committee is focused on bringing a “DEI lens” to all of our programming, events, and initiatives. We are carefully looking at all aspects of the organization while thoughtfully considering the needs of our community.

Aphasia impacts people from all races, belief systems, backgrounds, identities, abilities, and orientations, and we will continue our commitment to respectfully serving people and families from all walks of life. We are always interested in listening and learning and we invite our community members to reach out and let us know how we can better support you.

As stated on our website, “diversity, equity, inclusion, and accessibility are at the core of who we are at Triangle Aphasia Project, Unlimited. Our commitment to these values is unwavering and are central to who we are. We value, welcome, and affirm people from all backgrounds and perspectives, and we are committed to being a safe, inclusive, and collaborative community for all.”

 

Lesa Pemberton

Check out Lesa’s video to hear her story and what she loves about Triangle Aphasia Project.

Michelle and Bruce Long

 

On September 30, Michelle unfortunately suffered multiple bi-literal strokes as a result of postoperative complications that were related to other health issues. After two months in two different hospitals Michelle came home on 11/19/22. She is much improved on her left side (it is almost back to normal) and is slowly regaining her speech (though she understands verbal and written communication). Her right side currently remains almost completely weak- though she does have some limited movement. She can stand by herself but requires 24-hour one-to-one assistance with transferring from bed to wheelchair to everything else. Her medical team remains incredibly optimistic that given Michelle’s age and progress to date she will regain a full and normal life of family, work, travel, church and anything else she wants to do.

Michelle has a number of unrelated, yet equally serious, health complications that were discovered during the most immediate acute treatment of the strokes. Addressing those complications were postponed until she regained neurological and physical stability. During the months of December and January, Michelle will undergo a number of additional procedures to address those complications and ensure her long-term health. This means she will be in and out of the hospital in addition to her weekly Occupational Therapy (OT), Physical Therapy (PT) and Speech Therapy (ST) via home health and eventually out-patient rehab.

The Aphasia Project (Triangle Aphasia Project Unlimited) www.aphasiaproject.org in Cary, NC has been exceptionally beneficial in helping us understand aphasia, apraxia and how/where to receive treatment within the first six months. We continue to lean on their expertise and would ask you to consider them in your end of year giving.

Kathy Freeman and her daughter, Liz

It’s been quite the year! This was the year that mom got officially diagnosed with PPA-Primary Progressive Aphasia, the progressive non fluent type. We had never heard of this. It is a neurological syndrome that can affect different parts of the brain but mostly the part that controls speech and communication. She understands completely and has all the info and answers in her brain but she can’t get it out all the time or it might come out as a different word. We like to blame it on covid and sheltering in place. They say the brain is like a muscle. If you don’t use it, it can get weak. When we were all sheltering in place for the year of covid, mom was living alone and wasn’t exercising the speech part of her brain-not many of us were. When we were able to get together again, we both noticed that something was going on and things had changed with her communication.

Mom retired from being an OB-GYN registered nurse practitioner at the age of 70. She moved to Raleigh from Erie PA the spring of 2016 to be closer to us-me, her only child, my husband who she has known since I was in highschool and her two grandkids, Jack and Haden (aka Bean) who lovingly call her ‘Mief’. My mom, always easy going and making sure others are happy and comfortable, said ‘you pick’ what you want to call me…She was given the one of a kind name from Jack as soon as he could talk! She didn’t skip a beat, she was retired and she was going to take FULL advantage of it, she signed up for EVERYTHING! There was Women’s Club meetings and volunteer work, PEO, Garden Club, taking her neighbor to the library weekly, grandkid events and you could catch her three (more during hell week) days a week working out at Orange Theory Fitness where she was one of the oldest people showing up and putting her all into it. If anyone asked her to do something outside of her comfort zone (kayaking for the first time in her 70’s) her immediate answer, YES!

Well, that lady is still here with PPA doing all the things, gardening and working in her yard every chance she can get. She now has NEW commitments to add to her already very packed calendar…TAP group meetings!!! Once finally diagnosed, as a next step, her Dr suggested she get in touch with Triangle Aphasia Project and start speech therapy. Again, she didn’t skip a beat and contacted Maura. Instantly there was relief. Not only did we get help and answers as to what was happening with her, but there is also help for family and friends. As soon as we could, my husband and I took the class How to Speak Aphasia. Maura helped us find her a speech therapist and get set up with the zoom meetings. Life would be so different if we didn’t find TAP, or it didn’t exist, I can’t even imagine. So grateful I have my mom here in Raleigh with me where there is a place like TAP and we could go through this together. Moms schedule has slightly changed, she just turned 76 and had to recently adjust the intensity and where she works out because of balance issues from the PPA. Not to worry, she has incorporated a new workout routine, one for speech, reading and writing to keep those parts of the brain strong and working together. Some days she even works out twice a day with TAP zoom meetings! She can be found attending Book Club, Writing, several Conversation groups, TED Talks, and when it’s warm again you can bet she will do TAP Garden Group.

It is coming up on a year with the PPA diagnosis and for the majority of the year she has been involved in the TAP family. I couldn’t be more proud of my mom! She is always up for learning more about this thing called PPA-which isn’t always an easy pill to swallow, is ready and willing to put in the work it takes to maintain her brain ‘muscle’, advocating for herself, and always willing to help where she can (just as long as it’s not during a TAP meeting). Most recently she was a part of a PPA speech research study she learned about through TAP. Getting involved in TAP has given mom, Mief, us the support and knowledge, which is power, to be in more control of how to deal with this thing called PPA.

Yvonne Creekmore

The day before Thanksgiving of 2020, my husband and I, and my daughter and her family went to Old Fort, North Carolina to spend Thanksgiving with my mother-in-law.  That morning at the hotel, I couldn’t get out of bed. My right leg and my arm were not working, and little did I know that I had a stroke. My husband did all the right things right away. He called the ambulance and away I went to the hospital.

I stayed in the hospital about a month and during that time I went to occupational, physical, and speech therapy. I didn’t know much about strokes or why they were doing OT and PT, except that it was supposed to help me walk and regain use of my hand. Boy, was I not prepared for the recovery journey, which I thought would be fast.  After I left the hospital in a wheelchair, I still could barely walk. I could not use my right hand. My speech was pretty good but I learned I had aphasia. I knew what I wanted to say, but the words just didn’t make it out.  The speech therapist told me about TAP as I was leaving the hospital.

There are a lot of groups in TAP that you can join. Something for everyone, no matter where your interest lies. To be around people who have had a stroke or a brain injury when you are going through the same thing is something I can’t describe. People know what you’re going through and it’s OK. We learn a lot through Maura, the other group facilitators, and each other.

It’s now 2 years later. I walk with a cane, and I am still limited with my right hand but I can drive, enjoy being independent, and I still smile.

I have this quote that I look at every day:

“When your head hits the pillow tonight,
Remind yourself that you’ll be alright.
You’re doing a great job, and be patient with yourself.
Remember that big things are achieved not all at once,
But one day at a time.”

Harv’s Journey with Aphasia and the Importance of TAP

My name is Barry Harvey. Everyone just called me Harv and for over 30 years, I have been a “lay” pastor. I used my gifts of nurturing and helping others understand the Word of God.

My life was forever changed on November 13, 2021, when I had a stroke. Initially, I couldn’t speak at all and my right side was completely paralyzed and my left side was weak. I was unable to speak- barely a whisper. After realizing what had happened, I became very depressed. I didn’t even want to continue living. But my wife believed in me and she continued to pray for me with my friends. After about 2 weeks, I got my confidence back and I was transferred to Wake Med in Raleigh NC. This is where I met Julia Canavan, from TAP. She invited me to the TAP Bible Study and it was such an inspiration to me because other people were there who knew what I was experiencing.

What TAP has done for me is incredible! It has allowed me to experience a great sense of community and belonging. When you have a stroke, you have a deep sense of loneliness and despair. It was great for me to have a community of people who understood what I was going through. I love TAP because every time we get together, I get encouraged, I get enlightened and I get empowered.  TAP has also empowered me to continue to use my gifts as a peer-leader in the Overcomers Bible Study Group. While I had great support from family and friends, being with my peers brought me great comfort, because I can talk freely and they can relate with what I am  talking about.

My right side is still very weak and I’m in a wheelchair. My speech has improved incredibly, but I still have weakness on the right side of my face and my voice has changed. There are days that I still get discouraged, but knowing that I have a groups of peers, gives me encouragement to carry on.

One of the things that you need, after having a stroke, is a community of people who are going to help you persevere. Weather you join the Bible Study group or some other TAP group, the community of peers is so important. TAP is filled with people who will love you and help you persevere through your daily struggles. Not every day will be full of sunshine, but the sun still shines and we’ve got a lot of great things to look forward to.

Megan Wardlow

My experience as a speech pathologist prior to moving to North Carolina was in a rehab clinic and skilled nursing facility.  I often found myself wishing I had more time to “just talk” with my patients and found it frustrating when insurance companies said “no more therapy” to patients who had suffered from a stroke or a traumatic brain injury.  After moving here in 2020, a new friend discovered I was a speech language pathologist and told me all about TAP.   “What a great concept!” I thought.  Why hadn’t I come up with this brilliant idea?   I was thrilled to know such a community and program existed because I knew from experience that the need was real, but I honestly did not give it much thought past that. We had just moved to North Carolina, and because of Covid and my children’s ages, I thought I would not have much to offer any organization or job.

Next thing I knew, I was contacted by Maura, asking if I’d be interested in serving on TAP’s Development Committee.  Everything would be virtual, so I said yes.  I had recently served on  the board of another non-profit and jumped at the opportunity to find a way to contribute to the greater good in the area.  The rest is history. I now lead the TED Talk group once a week and cover when I can for other groups.

TAP combines all the things I am passionate about: communication, conversation, speech therapy, relationships, service, and charitable giving.  Giving my time and money to TAP is easy.  I look forward to seeing my group members every week – seeing them grow and meet their goals, but especially listening to their thoughts and insights.  Everyone has a story to tell, and I am pleased I get to hear so many and facilitate conversations between some of the most interesting and bravest people I know.

We don’t know what life will serve us, so we must spend the time we have doing the most good we can. TAP does the MOST good for those with aphasia because it allows people to practice skills learned in speech therapy and provides additional resources after insurance is exhausted. Please, join my family and I and become TAP sustaining donors (Ice Breakers). Recurring donations are critical to the stability and long-term success of this phenomenal organization. 12 Days of TAP could easily turn into 12 months of gracious giving.

The Lucky One

By Simon Barton

I had my stroke in 2013, and as is the case with so many other stroke survivors, I never had a stroke before and for the longest time, remained clueless about the so-called recovery journey I was about to embark upon when being wheeled out of WakeMed Rehab hospital a few weeks later.

It was my very good fortune to be referred to Maura Silverman to take me on as my first (and only) out-patient Speech Therapist, fortunate not only because she was extremely talented at helping a wretch like me, consistently  testing my mettle and not only fortunate that her practice was located within the clinic  of my Physical & Occupational Therapist ( Steps For Recovery in Cary) and not only fortunate that she was the first to  encourage me to start writing but I was particularly fortunate that after a few weeks she recommended I participate with one of TAP’s groups that meet on Thursday evenings a group called, “Back To Work” which was made up of a variety of guys and gals from quite diverse backgrounds but each with the common complaint of having experienced a brain injury of some kind and it was within this group setting that gave my first exposure to the condition known as aphasia – a condition that I had not heard of before and the fact that my injury was  not located in that vulnerable area within the left side of the brain, it was a condition I was spared, again, fortunately for me. But the best part of rubbing shoulders with these Aphasia warriors is that I got to see, first-hand, the grit, determination and fighting spirit of ordinary folk in quite extraordinary ways and this fact has been the single biggest source of my motivation to not only further my writing exploits but has significantly helped shape my whole approach to what has become a   personal journey of discovery and reinvention.

I have been associated with TAP for well over 10 years and will be still attending my Thursday evening group meeting, faces might have changed over this time but I still enjoy  the same comradery, and leave each meeting  fully inspired and ready to get back tackling the writing my third book – my second was successfully published and launched at last month’s Strides For Speech Event!

For all of the above reasons, I shall be eternally grateful to TAP and continue to regard myself as definitely being one of the lucky ones! Best I go and get my lottery ticket now before I forget – I need to find a way to donate more, or anyone reading this is welcome to help them out – TAP is great, not proud and will gladly put your money to good use! Happy Christmas to our TAP family and hoping 2023 be a great year for us all!

JR and Robin

JR: Hi. I’m JR. I have Primary Progressive Aphasia. I have a story about independence and TAP.

I was just nestling into the classes I get at TAP and learning a lot. Then I was invited by my cousin in Tennessee to join them in the mountains. Hooray! A trip! Taking walks alongside mountain creeks with Spring flowers edging the stream. She and I are both almost 80 years old – perfect hiking partners.

Then, Yikes! It means getting on an airplane!!  Alone!! the noise, the crowds, keeping up with everything. What if something happens and I need to be able to tell them who I am, but I can’t get the words out. How can I even think of going away by myself?

I turned to Maura at TAP for some hope. TAP had some information. Here’s my daughter. She’ll tell you more about it.

Robin: Hi. I’m JR’s daughter, Robin. Maura and TAP had great resources for helping Mom. There were a few different travel documents that Maura gave us that we personalized with her name, contact, and flight information. Most importantly, there was a document that explained what aphasia is and is not, and how someone could help her. We printed all this out and put it all in a BRIGHT RED zipper pouch that she could easily find if she got into a jam.

JR: Thank you Maura and TAP for helping me live with aphasia and travel all by myself!

Lee and Michelle Pearson

Michelle:

On February 24, 2022, the love of my life had a stroke. We spent 25 days in the hospital as his body healed. It was during his last session of speech therapy before being discharged from the hospital when I was informed Lee had aphasia. At this point of his recovery, I thought this was a term to explain the current struggles he was having with his speech and that this struggle would be short lived.

Little did I know… Over the course of the next months, I learned more than I cared to know about APHASIA. A disorder, among many, that I wish did not exist.

It is difficult to witness the struggles Lee has expressing the brilliance that exist in his mind. You see, aphasia does not represent the intellect of my husband. His memory is great and his level of intelligence is amazing. This same story holds true for other people who have unwillingly befriended this thing called aphasia. It affects their ability to express the words that are very clearly thought in their mind. If this was not enough for them to struggle with, they also struggle with information coming at them too quickly.

When we came home from the hospital, it was disheartening to witness my once multi tasking, fast talking husband struggle to express a series of words.  After a few weeks,  it was devastating to watch my outgoing, loving, enthusiastic best friend slowly withdraw from the world around him. He would not answer the phone or text. Other than therapy, he had limited interest in socializing. As Lee continued out patient therapy, we were encouraged to get involved with TAP. After one zoom call with Maura, Lee was immediately excited.  At a point in Lee’s recovery when he was beginning to doubt himself and lose hope in recovery, TAP provided him with a different outlook and determination.

TAP provides Lee with a community of people who are on a similar journey and understand what he is experiencing. Most of Lee’s sessions are usually led by Abbe and there is lots of great conversation and laughter.  Lee currently attends 3 therapy sessions a week and he looks forward to them each week.  While listening to a few of his zoom sessions, I have witnessed a group of people encourage each other; teach each other and share lots of wonderful laughter. The environment that TAP has established provides hope for healing. It provides an environment of acceptance, encouragement and a future for better communication. Maura’s passion for a better future for people with aphasia is amazing.  This passion reflects through the time she spends working to make life better for those who suffer from aphasia and for the support this organization provides for their loved ones.  She surrounds herself with people who share this same passion to bring the vision for TAP  full circle. If your budget allows, please donate to this incredible organization. They provide their services for only $5 a session. Lee has people in his zoom sessions from Charlotte, Cary, Dunn, Raleigh, etc. It provides an opportunity for fellowship and therapy at little cost to  those who cannot drive and do not have transportation.

Lynn: My husband and I retired in 2009 from teaching in NY and moved to NC to be near our children.

I was first introduced to TAP, and the meaning of the word aphasia, while tutoring children in the Read and Feed program.

One summer the children joined the TAP members to read in small groups. The children were excited to share their reading skills, and I was extremely impressed with the TAP members’ enthusiasm and motivation. I was anxious to hear their stories.

Candace was a neighbor of mine, and she let me sit in on her book clubs. Her strategies and compassion as well as the participants’ support and encouragement for one another was inspiring. I looked forward to assisting the book clubs each Tuesday where I saw amazing improvements in language skills and in confidence.

TAP is such an incredible and unique organization! Aphasia can be very isolating, but TAP, with its encouraging environment, offers so many diverse opportunities for people to improve communication skills.  I only wish all those with aphasia had this opportunity. I was honored to be nominated for the Volunteer of the Year Award and to be part of the exciting celebration with Candace and Justine. I know, as a volunteer for TAP, I have gained far more than I have given.

Candace: This is the season of giving! All of our TAP volunteers show us every day what it means to give without asking for anything in return. Lynn, and so many other amazing people, are a huge part of what makes TAP thrive and continue. We need everyone in TAP’s world to give in such a selfless way, so TAP can continue to GIVE to all who need us. So, in this season of giving, I ask you to give to TAP, so we can continue to give to you.