Meet Ken

Ken Dodson 10/2016
Copyright: BMW Photography

Close your eyes for a moment. Imagine your about 30 years old. You have a wife, a couple of kids, a home, a job, etc. Your going about your daily routine and then it all changes. You are diagnosed with Alzheimer's. This is the new reality of the disease that is claiming more lives each year whom happen to be younger and younger. Throw out the assumption away that Alzheimer's is an old person's disease.  It's not.  The reality is, its every persons disease.

Meet Ken Dodson. He is now 38 and is living with Alzheimer’s. Let me repeat that.  Ken is 38 and is living with Alzheimer’s. I got the pleasure of meeting Ken and his wife Nikki through Hilarity for Charity, the Seth Rogen and Lauren Miller foundation that raises money and awareness about Alzheimer’s.  Ken’s story is heart breaking to hear about what him and his family are going through every day.  Ken and his family share their journey because as Ken said to me in person "Anything I can do to help."

Kennedy
Santa Monica Pier
Copyright: BMW Photography

This past fall, the day of the Hilarity for Charity event 2016 http://hilarityforcharity.org/ I got the honor to conduct a photo session with Ken and his family.  We also did photos of his beautiful daughter Kennedy whom is graduating High School this year.  (Congrats Kennedy! Your parents are very proud of you. And your beautiful inside and out.) 

Where do you go for an awesome photo shoot in Los Angeles? The Santa Monica Pier.  The images I am sharing in this story are from the photo session that day. I am looking forward to doing a follow up photo shoots with Ken and his family from time to time, so don't you worry, you will be seeing more of this amazing, strong family!

Ken wasn't one bit shy during our session. I enjoyed getting some beach shots of him and his wife Nikki. Ken's service dog Bella was also present for the photo shoot. Bella never leased Ken's side, and she is pretty darn cute.

To help complete the content for this story, I sent over a series of questions to Ken and Nikki. Reflecting on the answers I received back, I now have more questions. Thankfully this is only interview number one. 

Ken, Bella &  Nikki Dodson
Santa Monica Pier
Copyright: BMW Photography

Ken and Nikki live in Michigan with their 4 kids. Ages 17, 10, 5 and 4.  Ken is not really into sports unless his kids are playing them. However he does not make it to many sports events anymore. I imagine a sports event could be very overwhelming to a person living with Alzheimer’s. Lots of  noises and activities.  Ken does enjoy what he called  "tinkering" around in the garage, as well as driving his tractor. I have this visual of him driving a John Deere tracker with a big smile on his face.  I have to get a photo of this when I go to his home town. 

He doesn’t recall when he first noticed something was wrong. Nikki's response to this question made me laugh because when you are going through an awful life changing crappy thing, the best way to deal with it is through laughter.  I asked her when she first noticed something didn't seem right. She said "Right after we got married! The joke in our family was he married me and lost his mind, lol! But his personality started to change, he was forgetting things and having severe headaches." 

Ken finally went to the doctor and his wife was with him for every appointment. It was a blessing Nikki was there with him because the doctors kept telling them that Ken was depressed and stressed. Nikki was a great advocate for her husband and pushed the doctors to do more extensive testing to find the answers to what was really going on with Ken.

Mr. & Mrs. Dodson with Bella
Santa Monica Pier
Copyright: BMW Photography

Ken felt like a human guinea pig as they ran many tests on him until they were able to make a diagnose.  He was actually diagnosed in 2009 which means Ken was 30.  30, that number is mind boggling... I just cannot fathom the idea of hearing that at the age of 30. Your life is in the middle of its movies plot line and BAME, you have Alzheimer's, WTF?

With no family history of Alzheimer's, Ken is now the first person in his family to be diagnosed with the disease. Together they shared the news with their kids. Nikki said to me, "It's a learning process for us all."

Nikki was inspired to talk about being her husbands caregiver because people kept telling her telling her the word "no" and then they told her if she wanted better quality care for him she should divorce him and walk away. This was the man she married. She was not about to give up on him. The hardest part of the caregiver job is losing her husband and herself most days.  Ken isn't the same man she married. She misses the companionship that comes with a "normal" marriage.  As a caregiver she puts everyone's needs in front of her own as the family looks to her for help. That is a heavy burden to carry. 

It was a life changing moment for the Dodson's to chose to share their story.  Together after Ken was diagnosed  they chose to go public with it.  Today Ken is blessing others by talking about his diagnoses of living with Alzheimers at his young age. With the help of his wife’s encouragement Ken opened up. He doesn’t want his kids to go through what he is going through. Going public has led to several national opportunities including meeting Lauren Miller-Rogen and Seth Rogen.  The Rogen's also encourage him and his family to share their story in a way he and his family wanted too in a documentary called "This is Alzheimer's". https://www.crowdrise.com/ThisisAlzheimers

(Click on the link to see a brief clip of the documentary.) 

Ken with Bella
Santa Monica Pier
Copyright: BMW Photography

He fears of losing his family as his memories fade. He will never lose his family. I see them being with him every step of the way, he just won’t be able to see them there.  He is not the only one suffering with this fear of losing his family. His family fears they will lose him, and eventually they will.  It truly is one of the most heart breaking ways to watch a person leave this life to go to the next one.  Millions of people right now are losing their loved one to Alzheimer’s and not in the sense of the person dying instantly, they are losing the person they love over the period of years before the person passes this life to go on to their next journey.  Its starts with the loss of memories, than moves on to motor skills like talking, walking, eating, etc. I watched this with my grandma over a ten 10 year period. I have know others that have watched family members for 15 to 20 years before they finally pass away.  In a rarity I have met people that have had a loved one with early onset Alzheimer's where their loved one died within 3 years. 

Nikki's has fears too when it comes to Alzheimer's.  Her biggest fear is not being able to grow old with her partner while sharing the lasting memories of a life together.  She won't have those to share with her best friend.  Graduations, college, heartbreak, marriage, grand-babies.  The disease is robbing her of something that some many others get the advantage of having over the period of their life time.

Writing out Ken's fear and reading his fear makes me think of my grandma Bev and all the other individuals who are suffering from Alzheimer's.  Then one day while thinking of grandma Bev I thought to myself how scary would it be to wake up one day and not know where you are.  You do not know who you are. You don’t know your name, you don’t understand why people are telling you to do things that you no longer understand doing, like eating or dressing.  This is the first time I put myself into her shoes, their shoes.  These beautiful people that are living through this each day while they fade a little more.  This is where bravery is given to the Ken's of the world. They openly know part of their fate and they choose to be a voice. They are standing up to Alzheimer's.  Ken had said to me in person "It's for my kids."

Right now Ken's favorite memory that he can currently recall is being home with his family.   When he is having a bad day his wife helps calm him down or he enjoys listing to some gospel hymns music.

Ken Dodson
Santa Monica Pier
Copyright: BMW Photography

Together Ken and Nikki will and are making a mark on Alzheimer's. They are messing it up! They are fighting back.  They are doing so because they want young people to know they can make a difference. "We are ordinary people, making an extraordinary difference! Be the voice for our loved ones, be the voice for those who can't, be the voice for your rights to continue to live life with a horrible disease, don't let the disease live your life for you." Amen girl! Amen! 

Stay tuned for more interviews to come. 

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