This is our original story from our fist walk in 2019. There is an update at the end.
Chances are, every person who reads this knows someone who has been affected by Alzheimer's Disease. It is all too common. Maybe a grandparent, a parent, a neighbor, family friend... Unfortunately, I have a very personal connection to this disease. My 54 year old husband, Daren, was diagnosed 6 years ago with Early Onset Alzheimer's Disease. Like many of you, I had no idea this was even a thing at our age. To me, this was an older person's disease. Daren was only 48. This could not be possible. Surely the neurologist was mistaken. After second and third opinions.. that was what we were left with, Daren has Alzheimer's Disease.
A little background on our story..... In 1991 I was almost done with college, busy with student teaching, and I met this handsome, smart, fun loving Navy man from Pensacola, Florida while he was stationed at Chanute Air Force Base in my home town of Rantoul, IL. Fast forward 23 years, many moves and three children later... Daren had retired from the United States Navy, he was doing very well at a new job, I had gotten back to teaching full time and our life was in full swing with a 16, 14, and 10 year old. Daren began feeling more and more overwhelmed at work and seemed more stressed than ever. Over Memorial Day He went on an annual fishing trip with long time friends and when they got back, I got a call from my sister who informed me her ex husband was concerned about Daren. He acted "different" on this trip. He seemed "off". About two weeks later, Daren called me and said he was just fired from his job. I was absolutely dumbfounded! He was shocked, angry, and confused. We agreed that maybe it was time to see his doctor to see if they could help shed some light on what in the world was going on. This began a long journey of doctors appointments, tests, and ultimately the diagnosis of Early Onset Alzheimer's Disease. It is very rare to be diagnosed at his age, but this is the hand we have been dealt, so we are doing the best we can. The diagnosis was difficult for all of us, including our children. We are very blessed that it has progressed very slowly over the past 5 years, only recently becoming more evident. He is on two medications to help with symptoms, but there is no cure. There was a moment when we went to our car right after getting the initial diagnosis that I think of often. I turned and asked Daren what he was thinking and he responded,"Well, nobody knows when their time is coming. We just have to enjoy every day in the mean time!" So that is the goal. Enjoy every day in the mean time! We are grateful for our eternal Hope and the strength the Lord provides us each day.
When I do research and join support groups, it can be very difficult because although every person's journey is very different, they all end the same. There has never been an Alzheimer's survivor. This is why we MUST raise awareness! We must raise money to help with research so that one day, there will be a cure. So that one day there will be Alzheimer's survivors.
** Since I originally wrote this post in 2019, things have progressed with Daren's disease. He is still amazingly upbeat and can often be heard whistling the tune, "Don't worry, be happy" throughout the day. I am constantly amazed and thankful for his ability to stay positive. The reality is that this is not fun, easy, or pretty, and unless a cure is found quickly, things will keep progressing. Still, we have a lot to be thankful for and will continue to make the choice daily to count our blessings.
We are so fortunate to be part of a research study on early onset Alzheimers called the LEADS study at Indiana University with a leading expert in the field, Dr. Liana Apostolova. For these research studies and new drug trials to continue, the fundraising must continue. Last year, you all stepped up and donated way more than we could have imagined to this cause and for that , we are so grateful. But we can not stop there. We need a cure!
Thank you for helping us advance Alzheimer's support, care and research!
I have raised