Posted by: @kelencoleman
It's the last day of Alzheimer's & brain awareness month & l'm finally ready (ish) to share (with my parents permission) a bit of our story. 10-15 yrs have gone by & we finally have a diagnosis for my mother. A very rare (17k-20k only in the USA) brain disease called #psp #progressivesupranuclearpalsy ,as well as Lewy body dementia. I have been semi documenting a lot of things along the way for myself with no idea what I'd do with it.
Then I was speaking with my mom(an ex actress & nurse for most all her life) & we thought maybe our humor & love could help some people going through the same or a similar thing we are. Or at least we could have some fun together! Having a diagnosis has helped to know what we are dealing with but don't get me wrong this & other cognitive disorders & diseases are the most heartbreaking, difficult, & cruel things. So one can only hope to help bring some love & laughter to ourselves & anyone going through it. With these diseases, you watch someone loose themselves AND loose you all while you loose THEM & then eventually loose them again all together. It's a cruel cruel thing and I don't understand how it happens to such amazing people like my mother who cared for others her whole career & life. If you have or had someone in your life with 1 of these diseases- please do reach out.
#makingmemories #endalz #pspawareness #enddementia #alzheimersandbrainawarenessmonth
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1 comment
I know how you feel! You did a wonderful job putting into words how this loss comes about and how we, as caregivers who are also their children, experience that loss as well. My Mother was/is also a dynamic individual. She was a runner and ran 5 miles/day, 5 days/week for over 20 years! She was running 5 years ago and now isn’t able to walk with her walker to the bathroom on most days. For some reason, I never imagined something like this robbing her of her mobility. Thank you for sharing your story😊