Cay Simmons

First post: Jan 15, 2021 Latest post: Jun 12, 2021
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Cay was diagnosed with Frontotemperal Dementia in 2014 after we struggled for a few years to find answers to why she was beginning to lose her ability to communicate with us.  We now know that those communication issues were the very first symptoms of the variant of FTD called progressive non-fluent aphasia.  As the years pass, we see her symptoms change and worsen and we believe that now she is in the later stages of FTD and showing symptoms from all 3 variants of FTD, progressive non-fluent aphasia, semantic dementia and the behavioral variant. We give you all those big fancy names associated with her illness so that you may do research and learn what is happening inside Cay's brain and gain a better understanding of her condition. We are sure you all understand that it is hard for us to talk about her deterioration. There is currently no medications that can slow the progression of FTD. We invite you to learn more about this rare disease in hopes of bringing awareness to it. We often say that it is a disservice to call this illness dementia. It is technically dementia, yes, but the symptoms are very different from common dementia types such as Alzheimer’s. We have become passionate about educating people to know the difference. Cay shows no symptoms of memory loss at all. How crazy is that?! We hope that you will go and read more about FTD and its variants and pass on your new knowledge to someone else. Cay was passionate about helping people and she would be happy to know that by spreading awareness of FTD we might help other families struggling with their own journey through FTD. 
Here is a link to a good place to start learning.

We will post updates as often as possible about our family's journey with FTD. If you are wondering what's been going on since she was diagnosed in 2014 see below for a recap. 

Since 2014 Diagnosis:
Cay lived at home independently for many years after her diagnosis. Her symptoms were limited to progressive non-fluent aphasia. Even as she lost most of her speech, she was able to live independently and do things for herself as usual. A few years ago (maybe 3) we started to notice that she was struggling to complete some daily tasks. We arranged to have in-home help. Cay stayed at home for many more years with in-home caregivers as her symptoms progressed. About a year ago, we got to the point where in-home care wasn't enough, but as you can imagine COVID really made the idea of moving her into an assisted living facility very hard to imagine. We tried to hold on as along as we could and kept her at home with an all hands on deck mentality. We brought in a second in-home caregiver to share the responsibilities. She spent time with Sara in Thomasville periodically to give Byrd a chance to recharge and catch up with work and Chad came to town almost every weekend to help. At this point we are seeing a fairly rapid decline and her symptoms were worsening to the point that it made caring for her very difficult. We weren't sure if she would fit into an assisted living facility with her current symptoms being as bad as they were but we started looking and asking questions. We found an assisted living facility that we agreed was a good fit. We moved forward with a plan to get help managing her symptoms with medications to make caring for her manageable and to move her into an assisted living memory care unit. She was there for about a month and her symptoms only worsened and the medications we were trying did not achieve desirable results. We ended up in the hospital after she had a bad reaction to a medication. After being discharged from the hospital, Cay stayed with Sara while we all discussed how to move forward, now knowing that she couldn't live in an assisted living environment without figuring out a healthy balance of medication. We made the decision to check Cay into the Dogwood Senior Center for a few weeks so that she could be under close observation while her new doctor regulated her medications. She stayed there almost a month and is doing better than she has in a while! She is now (as of Jan 2021) living at The Orchard at Stone Creek in Valdosta. The doctor from Dogwood Senior Center, who helped us with her medications, agreed to keep her on as a patient and she will have regular visits with him to maintain a healthy medication balance. Please follow along for more updates and information. Cay cannot have visitors at this time due to COVID but we hope this will change soon.

Cay no longer speaks and when she does use words they usually are not the correct words. She has several repetitive behaviors like walking the same route constantly, repeatedly saying no, no, no, blowing air through her lips non-stop, laughing and other noises. She sometimes has problems with incontinence and consistently has trouble completing all the steps in a task.

We aren't sure how much of our speech she understands, but if you would like to send her something, please do. She loves to look at photographs and she enjoys being read to with lots of expression! She loves to color, string beads, and do crafts.  AND she knows who you are! Her address is below.

With Love, 
The Simmons Family

The Orchard at Stone Creek
Cay Simmons House 1
4900 Tillman Crossing
Hahira GA 31632

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