He was my favorite person at Toastmasters when I was a member 13 years ago, at the time of my Parkinson's diagnosis. He was vibrant, talkative with a slight southern drawl and a folksy sense of humor. We both had become quite competent public speakers.
When I arrive home from the DBS support group last Friday, I see his and his wife's name on my phone's caller ID. I pick up the phone to retrieve the message but there is none. I turn on my computer and discover that his wife has sent me an email. She says that I wouldn't recognize her husband and that he has Primary Progressive Aphasia. I'm speechless.
Primary Progressive Aphasia (PPA) is a rare motor skills degenerative disease with no treatment and no cure. She says he is dizzy all the time, very thin, talks very little, cannot communicate verbally or in writing, walks with a cane, goes to bed at 7 PM, sleeps in a twin bed in the computer room on the main floor, has balance problems, and creates holes in the walls of their home due to his falling. Their son has moved back home to share her caregiving load. Again, I'm speechless, and relieved to respond by email and not have to formulate the right words of support in person.
Her world has narrowed to taking care of him before work, going to work, and taking care of him after work. She is articulate in describing what it's like for her, yet I am clueless about how difficult it must be and don't know how to respond.
For the past five years, their lives have been consumed by appointments with neurologists, MRIs, and PET scans. They finally found a neurologist who "wants to get to the bottom of this" instead of all the others with a "there is nothing we can do" attitude. The neurologist obviously knows what to say despite the dire prognosis.
I am a compassionate person, but with Parkinson's, I occasionally can't string the right words together at the right time. I have no idea the pain and frustration they must experience when he can't communicate and is totally speechless.
More information on Primary Progressive Aphasia can be obtained at: http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html
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