DAY 3 – 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!

DAY 2 – 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.

DAY 1 – “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.

Day 12 – Love and Understanding

Tom C (and his wife Donna)

 

 
My husband Thomas at age 61, suffered a massive left brain stroke (5/12/14). We were told by the doctors that he would not survive this stroke and then when he lived beyond the predicted three days, they said “ don’t expect anything from him, he will be nonfunctional”. Boy did he prove them wrong! Although he continues to recover, he does continue to RECOVER. I mention this because there is so much misinformation about survival and recovery from stokes. Words such as neuroplasticity didn’t exist years ago when I was in nursing school. Thomas continues to struggle with expressive and receptive aphasia and apraxia. He also has right arm paralysis and short term memory deficits.

We were introduced to TAP by the rehab hospital Speech Language Pathologists. They highly encouraged us to contact TAP after discharge from the hospital. I will never forget the first weeks, months Thomas attended TAP classes. At the beginning of class the Speech Language Pathologist went around the table and had each client in the group give their name and tell the group what condition caused their aphasia. Thomas struggled for over one year and one half to be able to say his first name. He now is able to state his name, cause of aphasia and then ask questions!

It is heart breaking to watch him struggle to speak at times though his thoughts are clear as a bell. The good news here is that TAP has provided us with tools to get those thoughts out! Whether it is a gesture, drawing a picture, writing words down, pointing to an object, we eventually are able to understand what he wants or is saying. TAP provides so much support for not only the client but the family as well. It provides a safe space for the clients with varying degrees of aphasia. Thomas continues to attend TAP 3-4 times a week. I have no doubt in my mind that TAP therapists as well as clients have been instrumental in his ongoing recovery.

Maura asked for the clients to share their journey “ in their own words”. When I asked Thomas to share some of his thoughts on the subject, he said “ Everybody looks at me with love and understanding, the TAP clients and teachers ( SLP’s)”. “ I feel the same way” about them!

Day 9 – Finding ways to communicate

Lorre H (with assistance from Group Leaders Lina and Heather)

 

 
Lorre is one of the Wednesday WakeMed’s communication group longest members – having come for almost 5 years! When asked about what it was like 6 years ago when she first had a stroke, she says, “I couldn’t talk or anything at all. It was awful.”

Why does she continue to come to TAP? “I like to see everybody and work on my talking. I love to see when others get better. like that a lot.”
 

 
Although Lorre struggles to get words out sometimes, she quickly will try and write some words down to help her get her point across. Her selfless nature helps boost the morale of the group (and of her friends outside TAP who can’t drive so she volunteers to bring them places!). She is fiercely independent and refuses to give up when things get tough.

She also challenges herself by participating in Book Club.Reading was something she did a lot of prior to her stroke but struggled with afterwards. What does she think the best part is? “Oh I like that every book is so different. I like to talk to others about it. Nice to get back into it.”

Day 8 – 150% better!

David H

I had a stroke because of an aneurysm in 2016. I can’t hardly remember anything that happened. I was working at the time. After the hospital, my friends gave me a lot of help but I didn’t get normal therapy. I went to live with my dad who took care of things. I started coming to the TAP group in the summer with my dad. I couldn’t really talk then. My dad died in October [2016]. It’s ok now and my feelings are getting better.

I was living on my own in VA. My friends and my sister all live far from me. I kept coming to the group. In January [2017] TAP figured out a way I could get therapy and I have been getting better since.

I don’t know why it works. I am definitely better coming on Mondays [to the Winston-Salem TAP group]. A whole year ago, I hardly couldn’t talk. The people are nice and always help me with stuff I bring up.

It’s a mess but you’ve got to keep trying.

What other group members say about David:
“You come here every Monday and say ‘this is what I am figuring out’”
“150% better”
“I think you have limited opportunities to talk. I think it is good you come here.”
“He’s excitable, talking with aphasia!”
“When he started, he had limited vocabulary. Now he has a broader vocabulary. You are very good at talking now.”

Day 7 – TAP is a second home!

Don B

When I am at TAPS I feel at home. I feel like there are other people just like me that I can completely relate to and talk with on the same level. There is a special commonality and comradery that I feel with my TAPS friends and I have developed some special friendships with them over the past two years. I really enjoy spending time with them and their spouses and have spent many wonderful evenings socializing and getting to know them better outside of TAPS as well.

I especially enjoy the many various activities that TAPS has to offer each week like our singing group, harmonica playing, group discussions, writing classes and performing. I really enjoyed the recent TAPS fundraiser where I was cheered on as I crossed the finish line~ that meant allot to me. Our trip to the Legislature this summer where we met our state representatives and lobbied for TAPS was a very memorable and fun time as well!

There is really so much to say about what TAPS means to me…TAPS has helped me regain so much of my ability to talk and enabled me to better express what I want to say to those around me with confidence. In summary, TAPS has become a very big part of my life and where I go each week to find acceptance, encouragement and hope. I love all of the people at TAPS and all that it means to me.~

Day 5 – “I Need the Thing!”

Jennifer C

 

 
I will never forget that awful Saturday morning of March 26, 2011 when a blood clot shot into the speech center of my brain, blocking blood flow and damaging brain tissue. In other words, I had a classic ischemic stroke.

“What?” Tom asked desperately. “What can I get you?”

I really, really wanted to tell my husband Tom about this weird sensation of having SO MANY THOUGHTS in my head, but I couldn’t get them out. I grabbed his arm and tried to say something, anything. I stared in his eyes, willing him to read my mind. I’M A PRISONER, I was screaming in my head. MY WORDS ARE TRAPPED. HELP ME. UNDERSTAND ME. But all that would come out was a helpless, “I need the thing.”

Tom called EMS, and the next few days were a blur of tests and scans. One of the few clear moments was when my doctor said, “The damage done to the brain tissue is permanent, but we can stop more damage from happening.”

Brain damage. Permanent.

After a brief hospital stay, I was teamed with Julie Huffman, a speech pathologist at Rex Hospital. As Julie explained, the best way to get your words back is PRACTICE, PRACTICE, PRACTICE. The brain, she explained, can actually regrow neurons to replace the ones killed off by my stroke. In other words, the harder you search for the right word, the easier it is to remember it the next time.
I am very fortunate. My aphasia symptoms are pretty mild compared to other people. But I completely understand the frustration of stuttering, of searching for the right word, of having very complex ideas trapped in your brain looking for a way out. Even when talking with friends and family, aphasia is TIRING.  It’s HARD. It’s DISCOURAGING. I saw how quickly even an EXTREME extrovert like me could so easily start avoiding crowds or even one-on-one conversations with close friends and family. But then Julie introduced me to TAP.

Going to my first meeting was like going to a family reunion for the family I had never met before. It was a comforting, inspiring, and safe place. No one judged me. No one finished my sentences (wrongly) for me. I never felt pressured to “hurry up and get it out!” It was a place where people patiently waited for me to locate, process, and execute the necessary movements to say the right word. And because I was in such a place of understanding, the stress of “getting it right” was gone. I was able to “get it right” more and more often. I was able to PRACTICE, PRACTICE, PRACTICE, and take that confidence home with me.

I continually thank Maura, Julie, Jenny, and everyone at TAP who comes together for groups, book clubs, writing groups, challenge groups, and my personal favorite, TAProots (the garden group). You all are helping folks like me find ways to communicate and stay active with friends, family, and community.