primary progressive aphasia

What is Primary Progressive Aphasia?

You asked us for more resources involving primary progressive aphasia (PPA), and we listened. Our current book club selection is Where the Light Gets In by Kimberly Williams-Paisley, a moving account of her mother’s experience with PPA. We recently profiled Terry Jones as part of our on-going series of celebrities with aphasia. And now we’re kicking off our new video series with a brief explanation of PPA:

Our New Video Series

The video series has been a long time in the making, and we have several that we’ll be uploading over the next few months. We tested the waters with a short video for Aphasia Awareness Month:

The success of that video convinced the NAA to put the finishing touches on a series of short videos meant to educate the general public or the newly diagnosed. We thought it was important to start with primary progressive aphasia, not just because it is often misunderstood but because there are so few resources available for this particular type of aphasia.

Thank you for helping us share these videos and get them out to the general public, either through social media platforms, direct email, or clinic newsletters. As we said at the end of our Aphasia Awareness Month video, we could all use more understanding in this world.

Comments

26 Comments

  • Linda
    August 15, 2018 at 9:35 am

    Yes!!! The video’s or a good media platform for me and other people who has Aphasia. I have aphasia. Four years ago the August, a stoke. I have come a to going to aways to go. Thank, God, bless him every day! And you, Thank you!

  • Traci Herald
    August 15, 2018 at 10:29 am

    I love the videos. It helps my other family members understand what my mom is going through. Thank you

  • Anita morales
    August 15, 2018 at 10:39 am

    My father was diagnosed with aphasia about 7 yrs ago at age 63 the disease progressed fast within 2 years he had lost all ability to talk and comprehend, sadly he lost his life in 2013. A year ago my mother was diagnosed with Logopenic Alzheimer’s variant and she To is loosing ability to speak and comprehend. I am the soul caretaker of my parents. Is this disease hereditary?
    Thank you

  • Lois Siegel
    August 15, 2018 at 10:56 am

    My husband was diagnosed with PPA 12 years ago. We have moved to assisted living so he can get more care and I can get done much needed help! His PPA was slowly progressing until 2 years ago when it started rapidly declining. It has been a challenge teaching the staff here how to work with him! He can still talk but most of the time it is to tell us” no”, “get out of here” or to just randomly talk! Thank you for articles on this disease! I would love to find a support group for PPA caregivers. Would even be able to do an online group.

  • Anonymous
    August 15, 2018 at 11:45 am

    Video was great. Thank u,

  • Denise Walker
    August 15, 2018 at 11:51 am

    The videos are wonderful-short and clear. I have a dear friend with PPA and have forwarded the videos to our circle of mutual friends. They found them extremely helpful. Thank You!

  • Anonymous
    August 15, 2018 at 1:39 pm

    Thank you for the vidio I have ppa/alzimers this is great how its expkained thsnk yoi

  • Gary Murphy
    August 15, 2018 at 3:15 pm

    I am glad to see that others have found a place to find more information on PPA. I have PPA. I am 62 yrs. I was told that 2 years ago. I try to be positive. In those two years mostly I have been frustrated at times. Well more than that but I hide my emotions . It’s up and down. I have an AMAZING WIFE. She is my rock!!! My whole family is understanding what’s going.

  • david worrall
    August 15, 2018 at 4:36 pm

    I am frightened to watch the video as I don’t believe I’ve got PPA. I learn a new word each and every day. That way I stay positive. I had a stroke more than 5 years ago but apart from bouts a depression i manage OK (I am 78 years young).

  • Anonymous
    August 15, 2018 at 4:44 pm

    The videos are wonderful-short and clear. Thanks all profession.

  • Beverly Galloway
    August 15, 2018 at 5:28 pm

    Love this! So glad to share it so the world can know. Thank you, from a daughter who lost her mom to PPA in 2016.

  • Fiona
    August 15, 2018 at 5:30 pm

    Lois, try this support group: https://m.facebook.com/groups/441592592551251

  • Carol Friedrichs
    August 15, 2018 at 11:58 pm

    My 62 year old husband has been diagnosed with this horrible disease since 2014, but obviously had started his decline years before. What a challenge for me, his caretaker and wife of 40 years, to try to understand and stay on top of his needs since he cannot communicate them to me or anyone. I have given up everything that we enjoyed together in our former life adventures (we were outdoor enthusiasts) in order to stay afloat and find some type of sanity in this crazy phase of life. No hope, no cure, and only a decline to look ahead to. Memory care homes are outrageously expensive, but would be a life saver for us if I could figure out how to pay for.

  • Lisa Yost
    August 17, 2018 at 7:40 pm

    My husband of 40 years has PPA. He is 63 years old. It is such a challenge to stay connected when he is so angry and frustrated with his difficulties with speech and comprehension. We are working with a speech therapist to give us strategies to help us to communicate. Our friends are helpful, but slowly they are drifting away. That is so hurtful, but I understand. Thank goodness for support groups and sites such as this. it makes a difference to have a group of people who “get” what a struggle it is to live with PPA.

  • Linda Finney
    August 19, 2018 at 11:21 pm

    My beautiful sister which is a devoted wife, fantastic mom, excellent grandmother, much loved sister, loves God and a women with many friends has PPA. Some friends have dropped out of the picture which is hard for her to accept. She may not be easily understood verbally but she is so smart she finds a way to communicate. She has such good memory, takes beautiful photographs to share with all of us and we love her to the Moon and back.

  • Helen Trotto
    August 26, 2018 at 7:36 pm

    My husband has been diagnosed with ppa
    Two years ago. He is 75 and it’s very frustrating trying to communicate. I do not know what he is trying to say most of the time and he gets angry with me

    I would like to download some brain games but am having difficulty doing so. He sees a speech therapist once a week but he needs to do something at home too. Any suggestions?

    Helen

  • Gerald
    September 12, 2018 at 1:43 pm

    Oh my, have I got some learning to do. My older brother has PPA and was forced to retire as an attorney at age 62. My question is do I have it too? Lately I often find myself searching for the word I meant to use. For example, I meant to say the Cardinal statue my mom had represents my wife’s favorite bird. Instead I said Canary! I hate crossword puzzles for the most part. Perhaps going back to Toastmasters meetings would help me with maintaining verbalization. As a scientist, being able to share the exact word is critical to maintain competency. For example Industrial Hygiene Vapor monitoring via Thermal Desorption Unit-Gas Chromatography/Mass Spectrometry. It is important for me to be able to share the right words at the right time in the chemistry business. How strong is the hereditary likelihood in this case? Thank you, Gerald

  • Audrey Rowe
    September 27, 2018 at 8:59 am

    My husband was recently diagnosed with PPA. He also has memory loss. I haven’t read anywhere that memory loss is part of PPA. I am looking for resources and support groups to help me as his caretaker.

  • Elizabeth
    September 27, 2018 at 9:02 am

    THank you for this video. I hope to pass it on to friends.
    I first became aware of my condition in my university teaching when I literally didn’t know what would come out of my mouth! I also had difficulty giving conference papers (in reading, and pronouncing words even when I saw them written). And I was finding greater and greater difficulty with writing. And So I retired early, and have been watching this condition progress for the past 10 years. My friends say, ” that can’t happen to you, you have a Ph.D.” There is a strong tendency to believe that diseases such as Aphasia and dementia can only happen to people of low intelligence. Also, friends say, “I don’t notice anything”, even as they routinely supply my missing words in our conversations. I have found it to be very difficult to find even one person with whom I can share my experience of Aphasia.
    However, in the past week, I was able to discuss it with a pharmacist who is a friend. That meant a great deal to me. Even the several assessments I took with health professionals were frustrating because none appeared to know anything about the condition, and I drew a blank when I tried to discuss my research on the condition. The result of the last assessment: “You scored low on words” , and, “decreasing cognitive ability”. No willingness to discuss Aphasia as a recognized condition. A situation I must face is the strong potential for the condition developing into full dementia, as my mother and all her siblings had dementia, never fully defined as Alzheimer’s Disease; I don’t know if they had Aphasia. In the meantime, I hope to slow down the progress of the condition by remaining very active, keeping that blood running to my brain -walking, gardening, swimming.
    So, I am very encouraged by the attention now being paid to PPA by this organization. I hope you will post some of the medical papers on the history of the study of PPA.

  • Mike McHale
    September 27, 2018 at 9:38 am

    I am 52 year old person who has been affect with Aspahia. I cheer this video !!!

  • Terry Lee
    September 27, 2018 at 9:57 am

    This is a great website! Also, “Finding Linda: A Family’s Journey Coping with Primary Progressive Aphasia” (https://vimeo.com/258156654) might be helpful in illuminating a family’s experiences helping wife and mother Linda. It’s a documentary shot over a six-year period.

  • Nancy
    September 27, 2018 at 1:16 pm

    Great video on PPA! Although I do wish it included a discussion on the Alzheimer’s connection and the behavioral issues associated with the progression of the Logopenic variant. My mother (age 77) has this and we had to move her into a memory care facility last week. It is difficult to explain this PPA condition with its memory and behavior related symptoms to those who do not understand the relationship or are only familiar with aphasia due to stroke or brain injury.

  • Anonymous
    September 28, 2018 at 8:19 am

    Knowing that someone else understands my husband’s condition is comforting. Thank you for the informative videos I can share with family and friends.

  • Sierra Corbin
    September 28, 2018 at 5:04 pm

    Will share!

  • lynn
    September 29, 2018 at 8:10 am

    Has anyone with PPA also been through chemotherapy, hormonal therapy, or immunotherapy for cancer? We think there is a connection in my husband’s PPA and either platinum-based chemo or anti-androgens or bone strengtheners. Any others of you ?

  • Karen
    October 13, 2018 at 1:06 pm

    The videos are very helpful. I would try to continue the sessions of speech therapy as long as possible. Continue to stay active with tennis once a week and walking or classes of dancing. I am determined to keep active. I do appreciate the information that I’ve gotten from the videos and advise. Thank you!

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