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.

After moving to the Triangle in the summer of 2021 and beginning a new position as an outpatient speech-language pathologist, I quickly learned of Triangle Aphasia Project as a local resource for individuals with aphasia.

TAP really stood out to me because of their unique mission and focus on the life participation approach. As an outpatient SLP, I often see clients after they have participated in therapy while inpatient and in home health settings, however, I am often one of the first providers to see them as they work to reintegrate into their communities.

It is important to note that life is not therapy, but rather we want our outpatient therapies to help mimic life skills and train strategies to help clients return to their roles in their families, hobbies, social circles, work settings, etc. TAP has been the most wonderful resource to me as they help bridge this gap so well.

While clients will not always participate in 1:1 SLP sessions, they will continue to improve through the life participation model. TAP helps support this model and empowers individuals to apply their skills and strategies throughout their daily activities, whether on their own or with the support of family and friends.

Another feature that I love about TAP is the opportunities for training and educating families and friends through Learning to Speak Aphasia trainings, family trainings, and more. This is so valuable for maximizing recovery.

TAP inspires me to make therapy as meaningful as possible, and I am frequently learning new tips for myself, as well as tips to share with my clients from the excellent SLPs at TAP. It is through various opportunities at TAP, including volunteering for the Signature Event that I have had the bonus of meeting many other wonderful SLPs, TAP families, and friends.

I love that TAP provides me with another way of keeping in touch with former clients. One of my highlights was logging onto Bible Study and seeing six former clients on the call, continuing to practice their language skills through life participation. I am looking forward to continuing my involvement with TAP and am so grateful to this organization!

Wishing everyone a warm and joyful holiday season.

Amanda Cole, SLP