LeBlanc: Primary progressive aphasia

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There is a neurological disorder called primary progressive aphasia. It is a form of cognitive impairment which affects a person’s language skills. Not only does it confuse words the person is trying to say, it also may limit the intake of the words they are trying to comprehend, particularly when it comes to single words.

About eight years ago a good friend of mine from Tulsa, Oklahoma, began losing her sense of smell and taste. After being misdiagnosed several times by her general practitioner, she finally saw three specialists. They concurred: it was frontotemporal dementia (FTD).

As she and I talked, she explained how she had begun to notice a gradual change of tone in her voice. Anyone who had not known her previously would not have noticed the subtle changes.

What I have observed is that as we begin to talk, she has some difficulty speaking. But once the conversation gains momentum, her words seem to be less laborious. I love talking with her as it shows how truly brave she is. She puts any and all embarrassment aside and, no matter the situation, she works hard to get her words out.

Her sentences sometimes remind me of vocabulary tests I took back in a grade school grammar class. Fill in the blanks! She has explained to me that at times she has a word right on the tip of her tongue, but just can’t get it to transpire.

Fortunately she still types well. A speech pathologist is training her to use a lingraphica machine. She can type whatever she wants to say on the device and it will “say” it. She laughed as she told me how she and her sister like to play around, sometimes changing the voice tone.

There’s another wonderful feature for those who have lost their speaking ability entirely. The device can be set up so no typing is necessary. For example you can click on a “My Home” icon, which opens up a three-dimensional floor plan of a house. Tap the refrigerator or the bathroom. It enlarges what you have chosen, showing caregivers or friends the item selected, indicating a need.

It’s important for my friend to learn how to use this devise right now. In the future she might find it is her only option for communicating. But for now she needs to keep talking; the more the better. Honestly, I love hearing her voice. It makes me proud and happy.

Sadly primary progressive aphasia (PPA) is a type of frontotemporal degeneration which involves an eventual onslaught of dementia. Of course this and other symptoms will vary with each person, depending on which portion of the frontal or temporal lobes become damaged.

If you have loved ones with PPA, please be patient with them. I believe that the more comfortable they are, the easier it is to communicate. If you let them take their time, you may find they have a lot to tell you.

I truly believe the old saying, “Use it or lose it,” applies to people with PPA. Let them talk your ear off while they still can. You might be surprised by the amazing things they have to tell you.

For a decade Gary Joseph LeBlanc was the primary caregiver of his father, after his father was diagnosed with Alzheimer’s disease. He can be reached at us41books@bellsouth.net. His newly released book “Managing Alzheimer’s and Dementia Behaviors,” and his other books “While I Still Can” and an expanded edition of “Staying Afloat in a Sea of Forgetfullness,” can be found at www.commonsensecaregiving.com.