Kim Ovard, 52, is a former animal control officer who currently runs a highly successful animal rescue, is a comic book writer who is a frequent guest, along with her famous bull terrier named Tugg, at comic cons across the country, helps children by producing and presenting anti-bullying and self esteem programs in schools, raises awareness for Alzheimer’s, cancer and animal rights – and does all this even though she has been diagnosed with early onset Lewy Body Dementia.

In a brave, and somewhat unprecedented move Kim is talking publicly about what it’s like to live with the disease, the obstacles and trials she faces daily, and the way society’s preconceived judgments affect those suffering from dementia.

“People see us (those suffering from dementia) like we’re all of a sudden ‘not here’, and it makes people afraid to ask questions about our condition. As soon as you’re diagnosed, people treat you like you don’t exist and talk around you. Honestly, they don’t know any better, they go by what they read on the internet or see on tv. I just want people to know that I’m still here. Is it scary to talk about? Yes it is, but, I’m determined to help others suffering from this disease, because most are too afraid to talk about it. I know I have this condition and I’m OK with that. I just want to make it OK for everyone else. ”

“The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot, as though I am not here.”

And Kim is no stranger to helping others. She has taken on social issues ranging from bullying to feeding the hungry to animal rights since before she became an adult. “That’s just who she is,” Kim’s husband, Blake said. “Helping others is what her life is about. Even though she is facing the realities of Lewy Body Dementia, her concern is still helping.”

“What matters in the work I do is changing the lives of people like me,” Kim said. “My world entails walking out in life and seeing who I can help. People with dementia are so often afraid to talk about their conditions. A lot of them say that I’m brave to talk about it publicly. For me, I’ve got this, so I want to tell people and show that I can still do things. Yet others are afraid that they’ll lose their jobs, they’ll lose their families, they’ll lose their friends, they’re afraid people will think they’re dumb. I try to speak for them.

“The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot, as though I am not here. I constantly get, ‘You don’t look sick, everyone forgets things.’ Each day, I’m afraid to tell people how I feel. Usually, they don’t want to know or simply won’t believe me because I look OK.  People pull back because it will hurt to lose me, and they treat me like I can’t understand anything anymore. My family was in denial, and they still kind of are. They don’t want to believe this is happening.”

And how does Kim usually respond to those who don’t believe her? “I’m 52-years-old, and I do more than most people,” she said. “Honestly, I just don’t push it. If they’re around me enough, they eventually see it. I don’t look for sympathy. For me, fighting back is talking and not fearing what will be thought. I speak to many people with this disease. We are in here – still inside our bodies and minds – but treated as though we are not. That being said, I still don’t tell everything for fear of what others might think. I’m still learning to let it all out.”

tugg dementia

Tugg with friend at Comic Con event

The reality is that some people can be at best unintentional, and at worst uncaring and hurtful to those with dementia. “There’s a lady that I know who is familiar with my diagnosis, and she thinks I’m sicker than I am,” Kim said. “We were in public at a comic con with my dog and she was there and came out in front of the booth and asked me how traffic was that day. Now, we’re in a big convention center, with lots of people walking around and I said that it was busy. The next thing I knew, she walked up beside me and took me by the shoulders and shook me. She said, ‘Kim, I’m talking about the traffic outside.’ I had answered the question correctly, and I had heard the question. Yet because I have dementia, she assumed I was off. This was someone I knew.

“Another time, I was having a discussion with person who thinks I’m sicker than I am because he read about the end stages of dementia on the internet. We were having a conversation and he said, ‘You’re going to die soon, so you should spend all the time you can with your loved ones.’ That is something you shouldn’t say anytime to anyone. This is the kind of discrimination that we face. It’s really hard. I want to remind people that I’m still here!”

Kim has less concern for her own well-being and what she might face as the disease progresses than that of her loved ones while she is battling dementia. “The worst part of having dementia is not what I face; it’s the knowledge that eventually I might be bedridden. I’m afraid of what that will do to my family. They’re going to lose me, so I try to protect them by hiding what’s going on. You’re right, common sense would say that everyone should take care of me, but I work hard to protect them. They want to fix me, but they’re slowly realizing they can’t help me.”

“I think that those of us that are dying sometimes live more than those of you that are living.”

So, what is daily life like for Kim, or someone suffering with dementia? “Each day, each hour it changes,” Kim said. “Let me give you a bit of my day. At night, I have night terrors from hell, an alternate reality that I act out and wake from not knowing what is real. I might have Parkinson’s symptoms, tremors, wobbles, walk slow, stiff. My ass leaks. I can’t find words or always understand what someone is trying to say. I can’t control my blood pressure, or anything my brain does because I’m just at its mercy.

“I get angry. I curse, and cursing is not me, but I know my disease is acting up more than usual when I do. I lose empathy, I find the wrong things funny, and I say things that don’t know I’m saying. This disease is erasing me from myself. My fear is that I will be trapped inside of myself and not be able to communicate, and yet I will know what’s going on outside of me. Imagine hiding all this and more. But if you’re having a good day you can do things like this story.”

Before her diagnosis, Kim knew that something was wrong. “When dementia hits, it starts with simple things. We know something is wrong, but pinning down the symptoms is like playing whack-a-mole. Every day is different, so it’s tough to put your finger on it. All we know is that we’re not ourselves anymore. We can’t pay the bills, even though we have all your lives. We can’t find words; everything becomes a ‘whatcha-ma-call-it.’ We get lost on roads that we have driven all our life. We can’t find our way in a building or out of a simple parking lot. We become a kind of masquerader, where we try to hide the mistakes we’re making. Of course, people notice but we find a way to laugh it off. By the time all this is happening, if you’re like me, you’re in the best time of your life.”

After an official diagnosis comes, when people should be supporting, that’s often to opposite of what happens. “Sadly, we lose friends. Again, this disease is hard on our loved ones. I do a lot on Facebook, both with my dog and advocating for people with Dementia. Anyway, I had this one lady contact me and say, ‘I can’t read your work anymore because it breaks my heart that I’m going to lose you.’ Those were her feelings. Can you imagine my feelings? I want to talk from the inside, but people are afraid to listen. It’s no wonder we’re (people with dementia) quiet.”

Kim does have advice for someone who has a loved one diagnosed with dementia. “You just need to speak openly to them,” she said. “Allow them to get their fears out there, and this can be scary. They’re already hurting, they’re coming from a place where they’re losing everything they know. Help them. Talk to them. Don’t say, ‘do you remember that or do you do that?’ If they’re calling it a whatcha-ma-call-it, try to help them locate that word. If they repeat themselves a few times, there’s no need to correct them. Really, you just need to be there with them. In the stages that they can’t talk, don’t assume that they’re not in there. There’s the language of hugs. Just sit there with them. They’re in there. Just love them. I guess that’s the most important thing.”

But, in the midst of everything she is going through, Kim still finds joy in life. “I have found that I am a hope giver. I find joy every day. I believe in God. I see miracles and beauty every day. Life is beautiful. I wish people didn’t take it so for granted. When you leave home tonight, pay attention to what’s around you. Open a door for someone and have them smile. I just get a kick out of life. I think that those of us that are dying sometimes live more than those of you that are living. It’s just beautiful. My joy has to do with who I can help. I wake up every day and thank God for giving me another day that I can help someone. I wished people just lived. I don’t get too down about things. We’re all going to die. I’m going to enjoy mine.”