Posted 6-26-19
There is no real theme to this post…just steaming little pile of thoughts:
- Early Diagnosis clarification:
One of the many reasons I frequently cite to get formally diagnosed if you fail some of the ten signs brochure that the Alzheimer’s Association uses to promote the conversation is that there is a class of drugs (Aricept and the like) that may extend the early stages up to 6-9 months. Two things about that: It doesn’t “stop” the overall progression, it tends to lessen the symptoms in the early stage and make it seem to last longer. The stinkin’ disease is still doing its thing, but it may be less apparent while on the medicine until it stops working. Secondly, it doesn’t extend the life, it just extends the “better” part. Hopefully my little goofy video explains this better. 🙂 I am a tech director by trade, but the device I was using wasn’t equipped with good AV tools. 😉
2. This week was the launch of my Walk to End Alzheimer’s team, dubbed again this year “Never Gonna Give You Up“. The name is a promise we have made to mom and the Sweet 17 and Sweet 17s all over the world: to fight for a cure and for better lives for those suffering because of dementia. Here is my team page. Give if you like/can. Walk, roll, bike, skateboard, etc…with us if you can. It is September 21st on a Saturday and is a very emotional and helpful time of remembrance, of advocacy and of sharing. If you haven’t experienced a Walk, you need to!! You DO NOT have to be personally affected by the disease to join. (Note: if you are not yet affected, rest assured, you will be soon, statistically speaking. 🙁 Sorry for the harsh reality).
3. One of my favorite teachers in my high school years passed away “peacefully in her sleep” earlier this week. The beloved K. Smith is one of the many of my high school teacher mentors who helped make me into the person I am today. If I write well, K should certainly get some credit (…and for the lesser qualities of my writing, blame it on years of mindless meme viewing on the internet for atrophying what is left of my brain.) I am not sure what the health culprit was that took this precious lady, but she will be missed. May you be surrounded by people in your eternal reward whose hearts “bleed purple peanut butter” too, K. 🙂
4. We had a very nice event with Lieutenant Governor Kehoe and a bunch of influential men and women yesterday celebrating the passing of our Growth and Development Bill (SB 275). The Alzheimer’s Association in Missouri also passed two critical bills this session to help family caregivers and to provide respite. There is lots throughout this session to celebrate! It is a reminder, in the context of this blog, that our care team, if you will, extends far beyond us and our family and our nurses. Legislators, advocates, grass-roots supporters and other groups who care about seniors (with and without the disease) and those with early onset dementia are part of our team as well. It truly takes a village to care for these precious men and women, and these warriors deserve kudos too!!! 🙂
Lastly, we had a nice visit with mom again yesterday. Me, my sis and my stepdad even got to visit at the same time. 🙂 (My stepdad lives nearby and visits every mealtime and me and my sis usually alternate days and times, but some rare days we get to overlap. 🙂 ) She was in a great mood, all things considered, and we had a nice, if shorter than I would have liked, visit. 🙂 She is very happy these days even in the late stages of the disease. I am so thankful that she is emotionally doing “better” than just a few short months ago!
Lastly, just an enormous thanks for helping make the Digital Cornbread page what it is. 🙂 We have a couple thousand subscribers through WordPress and a decent number through the auto-delivery tool as well as over 400 page likes on Facebook. Spread the word like Paula Deen spreads the butter on analog cornbread. Please share my posts, copy them to posts you see where they may be useful, and forward them everywhere. If you know someone who needs help or advice, send them my way…If I don’t know what to tell them, I certainly know those who do. 🙂 Thank you all!
#EndALZ
