Living and Loving with Alzheimer’s Disease: Kim’s Story

kimand phil

Phil and Kim Wilson have been happily married for seven years. Their home in Rome, Georgia is recognizable for its well-tended garden, ablaze with vibrant colors. Kim’s children live nearby along with her grandchildren – 3 boys: Mason, Oliver and Dexter. Phil and Kim have a close-knit family and a wide circle of friends and colleagues, but 18 months ago Kim’s husband and her friends began to notice some unusual changes in her behavior.

Kim too, was noticing that something was not quite right. “Honestly I think it was when I was still working, that was when it got me a little bit torqued out and I just couldn’t handle the stuff that I needed to do, and I found that to be very hard for me, and I’m like, what’s wrong with me? When I did not have a job I would stay at home most of the time. I felt like I was very cloistered. Sometimes it was very frightening, because I would have to think first, and listen internally and then it was almost like boom, I woke up again. I was asking myself, what is really happening with me? ”

Phil explained that the first time he really noticed something different was when he visited Kim on a lunch break with some of her colleagues, and she didn’t really appear to know where she was. After this, he began to add things up that he hadn’t really paid attention to before.

“Last Thanksgiving,” said Phil, his voice thick with emotion, “is when it probably hit us all. Kim has always cooked Thanksgiving dinner, always. She gets out Aunt Jean’s recipe book and follows it to a T, and just charges through it.” But sadly, this last holiday, was very different. “She opened the recipe book and burst into tears because she could not follow a recipe. She could still do the cooking, but I had to prepare all the ingredients for her.”

Kim’s children were also becoming increasingly concerned about her because they noticed that during conversations, she would get lost in sentences. “She would be half way through a sentence and would just stop, and just wouldn’t know where she was coming from. She would say opposite words, instead of saying day, she’d say night, instead of in, she’d say out,” said Phil. “We sat down with Kim as a family group and expressed our concerns.  We were very worried about her; she’s one of the most brilliant women I’ve ever met in my life. I was worried that someone who was so switched on and so smart, could get stuck on such simple things.”

In March of 2014, Kim’s family physician recommended that they see a neurologist, and he and his team conducted a battery of cognitive, psychological and physical tests. At that time, the tests did not indicate that Kim was suffering from Alzheimer’s disease. “Each time we got the results of a test,” said Phil, “we were going yes, yes! It’s not Alzheimer’s.”

But at the same time, the physicians were unable to find the cause of Kim’s symptoms. The final verdict came in March 2015, when local neurologist, Dr. William Naguszewski performed a lumbar puncture (also known as a spinal tap). This test examines cerebrospinal fluid – the liquid that bathes the brain and spinal column – for changes in two important proteins. These changes may indicate the early stages of Alzheimer’s disease[1]. The results of Kim’s lumbar puncture were positive for early onset Alzheimer’s disease.

A subsequent series of MRIs revealed that Kim had also experienced a series of mini-strokes, which are the result of blood clots blocking blood flow in the brain. This condition, though relatively common for anyone over 50 years, can lead to a form of vascular dementia, which may have been what initially steered the doctors away from a diagnosis of Alzheimer’s.

In July 2014, Dr. Naguszewski referred the Wilsons to Emory University Hospital, in Atlanta, to meet with Dr. Alan Levey, Professor and Chairman of the Department of Neurology at Emory University, and Director of the Emory Alzheimer’s Disease Research Center. Dr. Levey concurred with Dr. Naguszewski’s diagnosis of Alzheimer’s.

Kim is still being treated by Dr. Levey and his team. She has recently been invited to participate in a Dian-Tu study[5]. This 2-year prevention trial targets individuals who have a family history of a type of Alzheimer’s caused by gene mutation. This is particularly relevant for Kim since her great-grandmother, grandmother, aunt, and father, all suffered from Alzheimer’s disease. The ultimate goal of the research is to isolate the genetic mutation so that a bio-marker for Alzheimer’s can be identified in children at risk.

“It’s important to me (to be part of the study) because I’m trying to do this for me, and for other people and for my children and grandchildren,” said Kim.

Although Kim is well aware of the symptoms and risks of her condition, she retains a positive outlook for the future. “I would like to think that the next day is going to be a great day, but sometimes it is very, very hard. Sometimes I get to the point where I want to just go and sit down and have a big squall. You just never know. It’s the dynamics that are so hard. It’s like a tornado. It comes in and then it goes. When it happens you’ve got to roll with the punches, other than that I’d just be sitting in a corner all my life. I don’t want to do that.”

To remind her of how much she is loved, Kim’s daughter bought her mother a poster, which hangs on her kitchen wall. It reads: Always remember you are braver than you believe, stronger than you seem, and smarter than you think, and twice as beautiful as you ever imagined yourself to be.”

Being a caregiver also takes its toll, and though Phil is hopeful that a cure for Alzheimer’s will soon be found, looking down the road to his future with Kim can be daunting. “My biggest fear is that a cure is not going to be had, and I’ll come home one day and Kim won’t know who the hell I am,” said Phil. But whatever the future may hold, one thing is certain, Phil and Kim Wilson will continue to love each other while living with Alzheimer’s.

Kim’s disorder has currently progressed to the point where she has difficulty with mathematics. She is challenged with hand writing, telling the time, and she sometimes has moments of general confusion. However, she has a message of inspiration for anyone who is going through the same thing as she is right now: “Be strong, carry on, don’t let it get you down. You have a life right now, so it’s very, very important to live that life as long as you possible can, just one day at a time. It makes something for everybody else, that’s what’s important. Yes, this is a sh**y thing that has happened, but I’m still alive and as long as I’m still alive I will keep movin’, and goovin’, as long as I can. Let’s go, wherever it is we’re going to go, let’s keep moving.”

On November 14, 2015, Kim and Phil, their family and friends will be keeping it moving in the Walk To End Alzheimer’s. The event will take place in Rome, Georgia and throughout the United States, with participants raising money for the Alzheimer’s Association[6]. You can find more about participating in the Walk To End Alzheimer’s and how to make a donation here.

  • Corinna Underwood: As well as being a long-time friend of Phil and Kimberly Wilson, Corinna Underwood has been a freelance health writer for fifteen years. She has been published in many outlets worldwide. She is also the author of several fiction and  non-fiction books. You can find out more about Corinna and contact her here.

[1] http://www.alz.org/research/science/earlier_alzheimers_diagnosis.asp#Cerebrospinal

[5] http://www.dian-info.org/

[6] www.georgiawalk.org/

 

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