We regularly are asked how Click! co-proprietress Frances Smersh is doing after she went public with her diagnosis of Early Onset Alzheimer's Disease over a year ago. Recently her husband (and partner-in-Click!) John Smersh sent out an email update:
Happy New Year
I hope the New Year finds you in good health and good spirits!
We started last year buoyed by the support of friends and neighbors. Doctors had told us that the timeline for progression of Frances’s Young Onset Alzheimer's Disease was uncertain, but what was certain was that the next year would be the best we could expect; that it wasn’t going to get better. So, friends and family rallied to help make 2016 truly our best year.
A year ago on New Year’s Eve Frances said to me, “But I don’t want it to be the best year ever. I just want to have a good life.”
And that’s what we set out to do. The best part of 2016 was reconnecting with so many friends from so many parts of our lives and so many parts of the world. If there is one thing I would urge everyone to do, it’s to spend quality time with the people that mean the most to you, wherever they are. It has been hugely rewarding to both of us to see so many of the good people we love and who love us.
We also found that after spending the first part of the year away from the shop that Click! is a place where Frances feels very much at home. She has always been a very social person, and the “social IQ" part of her brain is quite intact. She enjoys being on the floor at the store, chatting with friends, neighbors, and new customers.
Many people who’ve chatted with her in the store have mentioned that she seems great. In so many ways she is, though the disease has continued to progress. She participates in an annual research study that has reported her scores and scans are worsening, though not as fast as in some patients. At home we’ve seen this realized in her lessening ability to do tasks and chores by herself. She is easily confused and unable to do many things she used to do independently. Younger onset Alzheimer's Disease has been described as being less focused on memory, and more on executive function.
There is still as of this date no cure and no treatment to stall or reverse Alzheimer’s Disease. . . We’re focusing on the the things that that make her feel better and keep her spirits high like exercise and social interaction.
We have more plans to visit family and friends in the first part of 2017. When we return we expect to spend time at Click!, and to establish more of a schedule so she knows “what she’s supposed to be doing". I anticipate that Frances will become less able to be alone, and hope that friends who are close enough will be available to spend time with her, walking, talking, making art, however you’ve enjoyed spending time with her before. Please contact me directly via email to arrange visits as she has a difficult time with scheduling and calendars. If we have specific needs or requests we may reach out via our Facebook group.
To the hundreds of people who contributed to our Support the Smershes campaign: Thank You. We’ve been overwhelmed and unable to thank each of you personally. Your support has allowed us to get through this year without worrying about medical expenses, travel costs, and our reduced income. It has been a humbling experience to receive so much love and support.
With love and gratitude for your your friendship,