aphasia threads

Aphasia Threads: Doreen, Dave, and Melinda

Welcome to the Aphasia Threads Project, which weaves together three points-of-view: people with aphasia, caregivers, and the professionals who help each family navigate aphasia. Each week, we bring together three unrelated stories, one from each member of this triad, to learn from their experience. This week, we’re hearing from Doreen, a person with aphasia, who was 48 when she had her stroke. Dave, who is a caregiver for his wife. Finally, we’ll hear from Melinda, a speech-language pathologist at the Stroke and Aphasia Recovery (STAR) Program.

Aphasia Threads

Person with Aphasia

When I was 48 years old, I had a massive ischemic and hemorrhagic stroke. I had to relearn everything such as how to eat and walk.

Aphasia Threads

Aphasia Changes Your Life

Aphasia has sadly impacted my whole life. It’s difficult to communicate, numbers are hard, my right side is in constant pain/exhaustion, and I have balance issues. My relationships are minimal, and I lost my career.

But There Are Things That Help

I walk two times each day. I read books and articles on the computer. Music and instruments help, too.

aphasia threads

And Things You Learn Along the Way

I learned patience and to never give up. And I learned that I’m grateful to be alive.

What Caregivers and Professionals Can Learn From Me

We are physically there. We hear you, and we understand, too.

Aphasia Threads

Caregiver

Aphasia moved in with us in August of 2017, following my wife’s stroke (or CVA).

aphasia threads

Aphasia Changes Your Life

Aphasia thrust me into the role of press agent, interpreter, and social secretary. It is challenging. I participate and play those roles far above my competencies and usual degree of interest. Aphasia gifts me with the opportunity to more deeply and perhaps intimately know and love my intellectual, endearing, brilliant, beautiful wife of thirty years.

aphasia threads

But There Are Things That Help

I want people to speak with my wife directly when she is present and the subject of the conversation. Please don’t address me when you want to talk to her. Just talk directly with her. I understand that I am the person to whom the information is being delivered; you don’t need to add that part.

And Things You Learn Along the Way

Intensive speech therapy and aphasia treatment at UMAP (2 sessions to date and continuing 3x/week telemedicine) has been perfectly suited for my wife and yielded great progress and results. This may be due to her level of motivation to recover. She comes from a high functioning and achieving academic and executive background, and her personality fits with the SLPs on staff. It is truly an incredible program to witness, benefit from, and support.

aphasia threads

What People with Aphasia and Professionals Can Learn From Me

As a caregiver, I am tasked with and motivated to do the job, but without any training or education on the subject, like an SLP. We are equal partners on the treatment team. I invest great hope, respect, and appreciation in my wife’s SLP team.

Aphasia Threads

Professional

Melinda works at Stroke and Aphasia Recovery (STAR) Program in Lubbock Texas. She’s a featured affiliate.

I’ll never forget the first person in met with aphasia. It was 1989, and I was a graduate student completing an externship at a hospital. I will always be grateful to Mr. X for all that he taught me.

aphasia threads

What I’ve Noticed Along the Way

The biggest frustrations seem to be the loss of connections with friends (and sometimes family members) for persons with aphasia. The biggest joys are empowering people with aphasia to participate in life again by connecting with others.

There Are Things That Help

Group therapy helps. I have witnessed group therapy provide amazing psychosocial support and empowerment.

And I Encourage New Professionals to Learn About Aphasia

People training to be SLPs should meet people with aphasia and their families where they are. Listen and observe them carefully, and you will learn much.

What People with Aphasia and Caregivers Can Learn From Me

I am honored to meet and work with people who have aphasia and their families every day. I don’t have all of the answers, but I believe I have learned some techniques and identified some tools that may be helpful in their life journeys with this condition.

Aphasia Threads

Want to Be Featured in a Future Article?

Aphasia Threads is an on-going project created by the National Aphasia Association. If you’d like to be featured, please read the opening post for more information or fill out our form and we’ll contact you.

Comments

11 Comments

  • Shannon
    January 30, 2019 at 9:43 am

    My mother was diagnosed with PPA due to dementia, not stroke. I would appreciate hearing about experiences with this, as she will never regain her abilities, it will only continue to progress. Thank you.

  • Victoria McNeill
    January 30, 2019 at 10:31 am

    I lead a conversation group and also a singing group for people with aphasia. I am trained as a music therapist and work with seniors with a variety of neurological disorders under a community health umbrella at the Cummings Centre in Montreal, Quebec, Canada. I think that some of my group members would really appreciate being able to share their story through this platform and would love to featured.

    Thanks for what you do!

  • Kathleen M Lynch
    January 30, 2019 at 1:58 pm

    In caring for someone with PPA is there anything specific to be watching for. I notice her walking is getting more difficult along with eating and swallowing . Not able to speak and uses a tabloid to communicate.
    I find the Aphasia website so helpful. Have read the wonderful book ” Where the Light gets in” and also a book titled” When you love
    someone with dementia.” Thanks so much.

  • Jill Pedersen
    January 30, 2019 at 6:04 pm

    My husband received heart stents which resulted in a massive brain bleed then a massive heart attack attempting to stop the bleed. The medical mishap left a 3 time Hall of Fame collegiate track and cross country coach with global aphasia and wheel chair bound at Madonna rehabilitation hospital for 2 months. As a caregiver, mother and wife, I admire the 3 hours a day dedicated to cardiac rehab, stroke rehab and speech therapy for over 3 years even after insurance discontinued therapy services. University of Central Missouri has turned a traumatic negative into a positive. The speech language pathology program uses Kirk as a practice subject to students and advanced him from having global aphasia to auditory processing disorder. The UCM Athletic administration has proven to our family that there is more to wins and losses and kept Kirk on staff the past 3 years. Kirk Pedersen is a miracle to be alive, an inspiration to the community and proves that dedicating time to speech, cardiac, physical and occupational therapy provides a much better quality of life. Working on remedial drills for 3 hours a day for 3 years allowed Kirk to walk to a podium and deliver a speech to over 1,500 people at the Missouri Sports Hall of Fame Enshrinement. Totally amazing coming from a man who had zero communication skills 3 years ago.

  • Anonymous
    January 31, 2019 at 8:12 am

    This is such a wonderful idea and the perfect forum for sharing these stories. Looking forward to participating in this project!
    JoEllen Gilbert, CCC/SLP Brooks Rehab Aphasia Center (BRAC), Jacksonville FL

  • Faith Gill
    January 31, 2019 at 9:45 am

    My husban has been diagnosed wit a neurobasal brain degeneration and Marc 2018 he had a minor stroke. He had and had speach therapy however every month he is declining. Would you give me more information about the internet speach herapy?
    He uses his Apple I pad to write E mails when I do not understand . He reads books and keeps himself busy
    20 days ago he bruise a hip by a fall, he lost balance
    Now he is getting depress. He realizes that he is not getting better. He will need the aid of a wheelchair to move around the house so that we avoid another fall

  • Joy Wegner
    February 2, 2019 at 12:54 am

    My brother-in-law has been diagnosed with PPA about 2 years ago. I communicate with him via phone since he lives 1200 miles from me. This Threads is helpful… Would appreciate more info about techniques to communicate when not in person with my relative.

  • Mahjabeen jeelani
    February 2, 2019 at 8:54 am

    I have been following the artices and writeups of people on this forum regularly. My husband who is 68 now has been diognised primary progressive aphasia since 4 years .. We have moved to belgium three year ago, don’t speak the language. However he got a year of speak therapy , which di’t help much. Apparently there is not much one can do for this form of aphasia. My daughter and her family are the only support we have. I could like to participate in the aphasia threads . And be able to tell my story as a caregiver. Thankyou.

  • Mary
    February 12, 2019 at 10:22 am

    My husband has PPA. It is so misunderstood. He was an extremely intelligent man and is a retired engineer. He has given up his golf because of communication issues. He has had PPA for quite a few years and now finds it difficult to communicate at all. I try to stay near him when he is talking with others to help. So many people think he has dementia and dismiss him. Many friends are kind and pretend to understand him. He is starting to have some memory issues but is sharp minded in other areas. It is difficult to know when a subject is being discussed. I have found that he often stays quiet and to himself when we are in a group situation, even with family. It is heartbreaking and I am not sure how far this disease will go. This website has been a tremendous help.

  • Anonymous
    February 12, 2019 at 12:04 pm

    I am the caregiver for my husband. He was semi-diagnosed with PPA about 6 years ago. His speech is deteriorating and his walking is slower and left foot drags. He has stumbled and almost fallen several times. There are other things where his left eye closes until he prys it open. Last week he told me he thinks he had a stroke instead of PPS. We have had some speech therapy sessions (3) last year. Unfortunately, we have no support groups here in the Birmingham, Al area. Can you help us find support resources?. Can you tell us what the next steps are in his process? The threads help by just knowing others are in similar circumstances. Thank you so much

  • Rev. Ronald F. Mease
    February 12, 2019 at 11:53 pm

    I am a caregiver for my wife who 7 years ago had a stroke. The stroke left her with limited use of her right arm and right leg and the inability to communicate by speaking or writing. She has aphasia. We have tried physical, occupational and speech therapies very intensively at first for several years and now we check in with a local therapy department every year to evaluate her condition and progress if any to see if there might be something new that might help her. I was encouraged at first when I heard of your organization and have read everything you put on this web site since I heard of your work. I have been disappointed in the guidance and help you offer for people with aphasia. It seems to me you have a great opportunity to help people in ways greater than just referring them to aphasia groups around the country. You could actually inform people of techniques to help people deal with their loved ones who have aphasia. Is there anything a caregiver can do to help a person with aphasia actually speak? If there are many things don’t just tell me that there are many things, tell me what they are and how to do it. If there are people who are expert in this field tell me about it: who are they, what do they do, how do they do it? We live in York, Pa and over the years have come to think that there are no speech therapists in this area expert in dealing with aphasia patients. I don’t want to believe that is true but the evidence is very convincing. So tell me what can you do to help me or better yet what can you do to help my wife speak?

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