I am sitting with my parents, watching PBS News Hour. It is 6:00, which means that my mom can have her nightly glass of wine and her bag of mixed nuts. This is important. Routine. Ritual. Judy Woodruff is the host tonight. This is also important. She is recognizable and trusted and revered by my mom. It is though my mom's best friend has come over for a visit.
In May, my mom was (finally) diagnosed with something called Benson's Syndrome. Posterior Cortical Atrophy. A rare variant of Alzheimers. A puzzle and a maze (quite literally). The diagnosis, which came after an MRI and a long appointment with a well-respected UNC neurologist, brought clarity. Oh!!! THIS makes sense! Finally -- after years of questioning and wondering what was wrong, this made sense. Well... I should clarify. This makes sense to US. Us, meaning my father, brother and me. My mom thought that her visit with the neurologist was very interesting, but she does not understand what is happening with her brain. It is, of course, possible that she understands more than she is letting on. But, at this stage, it is a blessing that she does not understand the nitty gritty. For that, we are grateful.
I have decided to write this blog for a few reasons:
1) Benson's Syndrome is rare. It is thought to be a rare variant of Alzheimer's. It is a heartbreaking condition and often misunderstood.
2) I want to give respect to my mom. As the disease progresses, I want to write about the amazing person my mom has been. I want folks to know about her life. I want folks to know about her truly exceptional brain - the brain of a musician; an accomplished and talented pianist.
3) I want to offer support to other families who are confronted with this disease.
4) Selfishly, I want to find support and wisdom from others. Resources. Ideas.
Okay, so this is the beginning. I have never written a blog. We'll see how this goes. If you have come this far, thanks for reading. And thanks for considering. You'll find out more about my mom soon. She's funny and fierce and smart and creative.
In May, my mom was (finally) diagnosed with something called Benson's Syndrome. Posterior Cortical Atrophy. A rare variant of Alzheimers. A puzzle and a maze (quite literally). The diagnosis, which came after an MRI and a long appointment with a well-respected UNC neurologist, brought clarity. Oh!!! THIS makes sense! Finally -- after years of questioning and wondering what was wrong, this made sense. Well... I should clarify. This makes sense to US. Us, meaning my father, brother and me. My mom thought that her visit with the neurologist was very interesting, but she does not understand what is happening with her brain. It is, of course, possible that she understands more than she is letting on. But, at this stage, it is a blessing that she does not understand the nitty gritty. For that, we are grateful.
I have decided to write this blog for a few reasons:
1) Benson's Syndrome is rare. It is thought to be a rare variant of Alzheimer's. It is a heartbreaking condition and often misunderstood.
2) I want to give respect to my mom. As the disease progresses, I want to write about the amazing person my mom has been. I want folks to know about her life. I want folks to know about her truly exceptional brain - the brain of a musician; an accomplished and talented pianist.
3) I want to offer support to other families who are confronted with this disease.
4) Selfishly, I want to find support and wisdom from others. Resources. Ideas.
Okay, so this is the beginning. I have never written a blog. We'll see how this goes. If you have come this far, thanks for reading. And thanks for considering. You'll find out more about my mom soon. She's funny and fierce and smart and creative.
Oh Becky- I am so happy to see you are doing this. I think it will be so helpful in the long run. It is bittersweet to actually get a diagnosis like this. Bitter more than sweet but sweet in that you finally figure out what is going on. I look forward to reading about your wonderful mom and her journey as I face a similar journey although a completely different situation with my mom and her fragility.
ReplyDeleteI look forward to reading more, too. I love N's picture!
ReplyDeleteThanks for taking the time to write and to chronicle some of your journey. when my mom was failing, I asked my therapist, "Why don't people write more about this?" and she said, "I think everyone is simply too tired from dealing with it." At any rate, writing is good for you and also great for the community of people who read it.
ReplyDeleteThank you, darling Becky, for taking us on this journey with you. I look forward to knowing your mom and to sharing this sacred space with you and your readers. My grandmother had Alzheimer's and my mom, who is 79 and in pretty good condition so far, has moved in with us two years ago, so this is especially poignant as I reflect on your journey now and my own in the past with my grandmother and perhaps ahead with Mom. Thank you.
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