Kimberly Williams-Paisley

Kimberly Williams-Paisley and Primary Progressive Aphasia

Kimberly Williams-Paisley was beaming at the altar, marrying the love of her life after playing a bride in the movies. She had pulled off the wedding of her dreams, surrounding herself with the people she loved, including her mother. She had no clue how life was going to change in the years after that wedding.

Welcome to the first post in our new book club selection: Kimberly Williams-Paisley’s book about her mother’s primary progressive aphasia called Where the Light Gets In.

First Moments

There may have been moments beforehand, and there were certainly moments after, but the first time primary progressive aphasia made its presence known to Kimberly Williams-Paisley was at her wedding.

Her mother was tasked with reading a poem, and she stumbled over the title and words as if there were typos on the page and she was frustrated to get an imperfect copy on such an important occasion.

This is how the book opens, marking the before and after. The before where her mother was an adventurous, no-nonsense sort who nudged her children to explore the world and everything it contains. And the after where her mother was unable to find the words to understand herself or that world around her.

Primary Progressive Aphasia

It’s emotional to mark the moment where everything changed. Of course, with primary progressive aphasia, it wasn’t the abrupt type of change that occurs with a stroke or traumatic brain injury. It was a slow loss that required the family to keep coming to terms with the situation again and again.

For the next weeks, we’ll be exploring this story of primary progressive aphasia, loss, and love. We hope you’ll grab the book from your library or bookstore, and join in the discussion. We want to hear your primary progressive aphasia story, too.

Image by dodge challenger1 – Kimberly Williams-Paisley, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=4184834

Comments

11 Comments

  • Leesa braun
    July 10, 2018 at 11:20 am

    I’m looking forward to reading this! It’s a difficult journey- my Mom was diagnosed far too late in both age and stage. We looked back and saw the first signs 10 years earlier but just thought it was getting old.

  • Cheryl Allen
    July 10, 2018 at 12:29 pm

    I highly recommend this book. I have read it twice as I make this same journey with my mother

  • Dave Freylack
    July 10, 2018 at 4:06 pm

    I’m Male, 2 yr PPA, 63 year old. Stem Cells in Cancun, Mexico, last month, wait for 5 months. Speaking terrible, write bad!

  • Catherine McCarthy
    July 11, 2018 at 5:34 am

    hi
    i’m Catherine. i have primarey Progresseve aphasia. I never said to oneerner I feel alone . I can talk but badlly. writing is a nightmare.
    read is bad as well. i’ll live to someone who has it .

    Catherine.

  • Juanita Lawing
    July 11, 2018 at 7:48 pm

    It was this beautiful lady that introduced me to what has become a nightmare. But without her telling her mother’s story I may be in much worse condition. I will ever be thankful to Kim. She is beautiful inside and out. Thanks to her so much.

  • Norma kreisel
    July 12, 2018 at 12:19 am

    I have P.P.A. for two years now am interested in stem cell if anyone has more info on it. I know this sickness is lonely I have started a support group called primary progressive aphasia people only cause I wanted people like me to talk to and after a few months of me talking and bearly anyone answering, and I have 21 people in the group, I realized it’s because it’s so hard for most of us to communicate even though we want to.

  • Sheila Lowthian
    August 1, 2018 at 1:42 am

    I am 74 and have recently been diagnosed with PPA non-fluent. I ordered this book and it will be delivered Thursday and I anxiously wait to read it. I only have slow speech and no other symptoms but I wonder about the progression steps.

  • Barb
    August 30, 2018 at 9:19 am

    My husband was diagnosed at age 61 showing signs of the disease 2-3 years prior to that. I feel fortunate that it’s slow progressing. I keep him active with travel, gardening, puzzles…anything but sitting around moping about the diagnosis. Starting to notice a few memory problems and comprehension problems. Teaches us to live life to the fullest. Anxious to read the book.

  • Lois Siegel
    August 30, 2018 at 12:31 pm

    My husband (75) was diagnosed 12 years with PPA. He was doing well until about 2 years ago when the decline moved more rapidly. We moved to Assisted Living in March of this year which has been the best decision I have made on his health and mine. He has become incontinent and understands very little when spoken to, he can still talk but it is scrambled. He still smiles at people and is content unless we try something new. Moving when we did has given him time to get use to the routine of staff working with him as far as toileting, bathing, etc. He is more content It has also given me time to get away from the caregiving I am anxious to read the book to see what others have done with PPA family members.

  • Pete Knudsen
    August 30, 2018 at 6:14 pm

    My wife Linda has PPA.and can no longer read, write or communicate. She has a stereotypic utterence which is 45. That is the only thing she can say. It is the worst experience of my life and hers. I don’t know how or when it will end, only that it will continually get worse. Fortunately, at this point she can still feed herself, dress and shower. She even goes out and plays golf with me as well as plays Mah Jongg with the ladies and wins!

  • Cheryl Bennett
    September 1, 2018 at 10:50 pm

    My husband started having speech problems about 7 years ago. Diagnosed with PPA 2 years ago. He has been in the mild cognitive phase since the beginning he has been highly functioning till now as I am seeing more speech problems and short term memory loss. He has the logopenic variant of PPA. It’s a long heartbreaking journey for both of us. I take each day one day at a time. He’s 69 years old.

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