How Do You Spell Balloons?
Mom in Paducah, KY the week she was diagnosed, holding her dog Ginger.
“Everybody forgets things” was a phrase I heard often when I tried to explain to family members that my Mom wasn’t quite herself and I was worried there might be some memory loss. But it wasn’t just forgetting where she left her glasses, it was more than that. We were preparing for our daughter’s High School graduation party in May of 2006. Mom had flown down to our home in Florida for the party and we were making a list of items we still needed to purchase. As I was rattling off items, she was making a handwritten list. “Balloons” I said. She wasn’t writing anything and she hesitated, then asked me how to spell balloons. We laughed a little and I began to spell the word for her. I watched and saw she struggled to comprehend what I was saying and couldn’t seem to write the word. I passed it off as a little memory lapse and with a bit of frustration, I wrote it for her. I thought nothing more about it.
The next thing I noticed was some trouble with her speech. She would forget the word she wanted to say, which is common, but more often she would substitute a similar sounding word for the one she wanted to say. We were driving home one day and as we passed through the country we saw an old church. She pointed to it and said, “There is a hysterical building.” and meant, “There is a historical building.” She knew right away that she had used the wrong word and laughed. I tried to laugh with her, but inside I was very concerned.
Soon after these incidents, I planned a visit to my Mom’s home in Paducah, KY. I spent a week with her and observed similar speech issues and I called to make her an appointment with her doctor. I had also consulted with her best friend and she too had observed some unusual speech issues and memory lapses. During all of this observation, I spent lots of time trying to convince Mom that seeing a doctor was necessary. She was in denial that anything was wrong and I prayed that I was wrong and she was right. The doctor examined her and referred us to a neurologist.
Mom and her best friend, Claudia. Love the socks, Mom!
There was a recent episode of “This Is Us” and the character Rebecca (played by Mandy Moore) begins to have memory issues. Her son, Randall (played by Sterling K Brown) and husband Miguel (played by Jon Huertas), take her to see a specialist and the tests that they put her through were almost identical to the ones my Mom experienced. 1) Draw a clock and place the numbers where they would go. 2) Tell me what day, month and year is it? 3) Repeat this list of words after me. There were several other physical exercises to check balance and other possible neurological issues. I sat with her through it all and had to keep silent even though my inclination was to help her answer the questions correctly. After the tests, we waited to meet with the neurologist to go over the findings. I knew she did not pass with flying colors. This was the moment of truth. Mom looked sad and worried. The doctor confirmed that she had the beginning stages of dementia and that he was fairly certain it was Primary Progressive Aphasia, which was not Alzheimer’s, but some patients could develop that later as the disease progressed. Primary Progressive Aphasia is a frontal lobe dementia that directly affects speech. Because she was still able to take care of herself, they did not recommend any immediate change in her living situation, but that we should watch for changes. I felt helpless and defeated, but I knew I needed to keep a positive attitude and would do everything I could to help my Mom learn to cope with the stages of this disease and give her the best life possible. The eleven year journey had begun.
If you are reading this and want to know more about Primary Progressive Aphasia, I have added a link below to read more about it. You can subscribe to my blog by hitting the “subscribe” button below and I will send you an email when a new post has been added. You will not be contacted by anyone or asked to purchase anything. I respect your privacy. I welcome any comments or questions below. Thank you for taking the time to read our story, and I welcome your comments.
Brendahttps://www.aphasia.org