aphasia threads

Aphasia Threads: Telling Your Aphasia Story

Every aphasia story is woven from three threads. At the heart is the person with aphasia, but tied to that person are their family and friends, especially caregivers, as well as the professionals such as speech-language pathologists and neurologists. Each member of this triad can learn a lot by listening to each other’s story.

This is why we are giving voice to all three stories in 2019.

Aphasia Threads

We’ve prepared a simple form to help you tell your story. We’re choosing to focus on information that we think other people need to hear about the emotional side of aphasia. For people with aphasia, we want to know about the way your relationships have strengthened or faded away and advice for those earlier in their journey. When it comes to caregivers, we want to hear which tools or apps help you aid your loved one with aphasia as well as what you wish SLPs knew about your situation. For professionals, we want to hear why you chose to work with people with aphasia and what you observe about treating aphasia.

We will be alternating stories weekly, presenting all three points-of-view each month. Our hope is that everyone walks away from this project with a greater understanding of how to best work together to navigate aphasia.

Who Should Participate?

The short answer is everyone who has aphasia as part of their world.

This project is open to everyone in the aphasia community and will be an ongoing project in 2019. In fact, we believe this would be a great project for support groups to tackle together, turning in individual entries while thinking about it together as part of a session.

We recognize that people with aphasia have more than one caregiver, and those caregivers live nearby and can speak about the day-to-day world while others live far away and offer support in other forms. We would love to hear from all friends and family who support a person with aphasia.

Unlike our recent affiliate highlight series where we asked that only one member from each clinic fill out the feature form for the whole team, this is a project that we believe benefits from each person in the clinic turning in their own entry and stating their own point-of-view.

So everyone who fits into one of these categories is welcome to join, regardless of how aphasia has entered your world.

How to Participate

Ready to tell your story? Click over to fill out the form. After you complete that form, Melissa will reach out to request any images you’d like to include with the story as well as any additional questions. You’ll be contacted a second time when we know your publication date.

If you have questions about the project, please email Melissa at [email protected] rather than leaving a comment on this post.

Comments

12 Comments

  • KevinP. Feeley
    January 23, 2019 at 5:54 pm

    [email protected] POST: 16:39 EST (USA) Wedn. 23 January 2019. yes. Melissa: it would be my honour and privilege to to provide the organization with what help that I could or can. yes. if you believe that my own story (copywrite pending) could or would find its way to being of help to and/or for, survivors, personal care attendants (PSA), medical therapists, and/or PhD’s, and M.D.’s attempting to navigate their clinical way through the labyrinth that we know as “traumatic brain injury’ induced ‘aphasia'”, then “Yes, the National Aphasia Association (NAA) does have my permission – to disseminate my own story of living withe aphasia. as told by and through my own eyes, in a manner that I described, as objectively as is possible for an individual in the first person.

    Decorously yours:

    KevinP.
    KevinP. Feeley (so ascribed on this day – 16:52 EST (USA) Wednesday. 23 January 2019.

  • David Hukari
    January 23, 2019 at 7:40 pm

    Mellisa

    I suffered a hemorrhagic stroke over 14-years ago on my right side. When I checked out of the hospital after 9-weeks, I was in a wheelchair and I said ‘yes’ to everything although I meant no. When I started speech therapy, I tried to speak but I could say ‘yes’ & ‘no’. After trying out 6 speech therapists, I finally one that was teaching children with learning disabilities. She taught me how to sing because singing teaches my brain and mouth to work together. Causing me practice cadence and rhythm. Natalie suggested that either take up standup comedy or join an improve group. For 5 years I’ve been telling my story about what happens when you have a stroke. That’s my story & I’m sticking to it. ✌️

  • Louis De La Foret
    January 24, 2019 at 2:52 am

    great project – giving a voice to those people whose speech has been impaired

  • Anonymous
    January 25, 2019 at 1:29 pm

    I am a Bilingual Speech Language Pathologist and work with clients that have Aphasia. I am always looking for helpful information to share with them.

    Thank you,

    Krista Hammer, MS, CCC-SLP/L

  • Caryn McAllister
    January 27, 2019 at 2:53 pm

    My husband and I run a comprehensive neurology clinic with my company High Quality Home Therapy (HQHTherapy.com) providing both office based and home based therapy services and his companies New England Institute for Neurology and Headache (NEINH.com) offering neurology and psychology services. In my experience as a physical therapist, most of my patients who suffer from neurological conditions have the most difficulty when communication is impaired. I am always searching for more ways we can help our patients so we joined this group. We will be highlighting one of our patients soon! Thank you for this!!!

  • audrey
    January 30, 2019 at 11:03 am

    I appreciate the work you are doing with this project and will contribute. I’d like to hear more from caregivers who have love ones with PPA/FTD.

  • Anonymous
    January 30, 2019 at 9:50 pm

    My husband did not have a stroke, but has been diagnosed with Primary Progressive Aphasia. He was diagnosed at the age of 60, and has been unable to work since that time. He was treatiig for over one year before being diagnosed. It is very isolating for him.

  • Mike
    February 3, 2019 at 2:48 pm

    Thank you for the opportunity to talk about aphasia when you have a stoke. I had a stroke in 2015 and it changed my view on a lot of things. I will be contributing to this project.

  • karmiris
    February 6, 2019 at 3:34 am

    My mother born 1931 suffered stroke and was diagnosed with broca’s aphasia in Sismanoglio hospital Greece since 6Dec2016. She cannot speak properly or say what she means but, she can read loud almost perfect.

  • Eydie Williams
    February 6, 2019 at 9:06 am

    My brother suffered stroke 5 years ago leaving him paralyzed on right side can’t speak.Hes in nursing home gets no speech therapy . They tried in beginning but butwere not consistent and he lost hope.He tries so hard to speak it upsets him terribly . What could I do to help him speak again? I am the only one he has. Thank you Eydie

  • Bruce Lill
    February 25, 2019 at 12:24 pm

    I had my stroke 6 months ago. My speech therapist did a great job of helping me to talk and read again. The other changes were harder to deal with then having speech issues. People can hear you have issues but the rest aren’t visible. The changes toward thing such as emotions or taste take a while to recognize it. I will be volunteering to your project by filling out your form. I’m front when telling people that I have Aphasia and they have been very supportive not trying to finish my words. It was weird as I had trouble speaking and reading stories but had no problems coding on my computer. I’ve recently joined a Toastmaster club to help improve my speeching.

  • Rose
    March 27, 2019 at 11:39 am

    My dad was initially diagnosed with Alzheimer’s but only after further evaluation was it determined he has primary progressive aphasia. We do not know of him having any stroke so we were surprised to hear this was the case. He is 73 years old and has lost a lot of his language to date. He did do speech therapy in the beginning but at this time, it is no longer helpful for him as his word retrieval is just not there. The great news is he is still a happy person and does well sticking to a schedule. My mom is his primary caregiver and does a fantastic job. At this time, he does go to an adult daycare facility 2 times a week so she has a break. I wish there was something we could do to change his outcome as there is still so much we do not know or how quickly it will progress. I’d love to hear of any input folks have that may assist us. Much appreciated!

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