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12 Days of TAP: Day 9

12 Days of TAP: Day 9

Kathy Freeman and her daughter, Liz

It’s been quite the year! This was the year that mom got officially diagnosed with PPA-Primary Progressive Aphasia, the progressive non fluent type. We had never heard of this. It is a neurological syndrome that can affect different parts of the brain but mostly the part that controls speech and communication. She understands completely and has all the info and answers in her brain but she can’t get it out all the time or it might come out as a different word. We like to blame it on covid and sheltering in place. They say the brain is like a muscle. If you don’t use it, it can get weak. When we were all sheltering in place for the year of covid, mom was living alone and wasn’t exercising the speech part of her brain-not many of us were. When we were able to get together again, we both noticed that something was going on and things had changed with her communication.

Mom retired from being an OB-GYN registered nurse practitioner at the age of 70. She moved to Raleigh from Erie PA the spring of 2016 to be closer to us-me, her only child, my husband who she has known since I was in highschool and her two grandkids, Jack and Haden (aka Bean) who lovingly call her ‘Mief’. My mom, always easy going and making sure others are happy and comfortable, said ‘you pick’ what you want to call me…She was given the one of a kind name from Jack as soon as he could talk! She didn’t skip a beat, she was retired and she was going to take FULL advantage of it, she signed up for EVERYTHING! There was Women’s Club meetings and volunteer work, PEO, Garden Club, taking her neighbor to the library weekly, grandkid events and you could catch her three (more during hell week) days a week working out at Orange Theory Fitness where she was one of the oldest people showing up and putting her all into it. If anyone asked her to do something outside of her comfort zone (kayaking for the first time in her 70’s) her immediate answer, YES!

Well, that lady is still here with PPA doing all the things, gardening and working in her yard every chance she can get. She now has NEW commitments to add to her already very packed calendar…TAP group meetings!!! Once finally diagnosed, as a next step, her Dr suggested she get in touch with Triangle Aphasia Project and start speech therapy. Again, she didn’t skip a beat and contacted Maura. Instantly there was relief. Not only did we get help and answers as to what was happening with her, but there is also help for family and friends. As soon as we could, my husband and I took the class How to Speak Aphasia. Maura helped us find her a speech therapist and get set up with the zoom meetings. Life would be so different if we didn’t find TAP, or it didn’t exist, I can’t even imagine. So grateful I have my mom here in Raleigh with me where there is a place like TAP and we could go through this together. Moms schedule has slightly changed, she just turned 76 and had to recently adjust the intensity and where she works out because of balance issues from the PPA. Not to worry, she has incorporated a new workout routine, one for speech, reading and writing to keep those parts of the brain strong and working together. Some days she even works out twice a day with TAP zoom meetings! She can be found attending Book Club, Writing, several Conversation groups, TED Talks, and when it’s warm again you can bet she will do TAP Garden Group.

It is coming up on a year with the PPA diagnosis and for the majority of the year she has been involved in the TAP family. I couldn’t be more proud of my mom! She is always up for learning more about this thing called PPA-which isn’t always an easy pill to swallow, is ready and willing to put in the work it takes to maintain her brain ‘muscle’, advocating for herself, and always willing to help where she can (just as long as it’s not during a TAP meeting). Most recently she was a part of a PPA speech research study she learned about through TAP. Getting involved in TAP has given mom, Mief, us the support and knowledge, which is power, to be in more control of how to deal with this thing called PPA.