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WNY man hikes Appalachian Trail in honor of cousin; raises money, awareness for Lewy body dementia

Dennis Pack knew he wanted to make his nearly 2,200-mile journey about something bigger than himself, so he dedicated his hike to his cousin, Tim Perkins.

ELMA, N.Y. — It wasn't long after Dennis Pack met someone who completed the Appalachian Trail hike when he decided he wanted to take on the challenge himself. 

Pack's wife and children gave him their blessing, and on April 19, he began his nearly 2,200-mile journey between Maine and Georgia.

"I did what's called a flip-flop hike, so I hiked from near the middle at Harper's Ferry, West Virginia, and hiked all the way to Katahdin in Maine, central Maine. Then I flipped back to Harper's Ferry and continued and hiked all the way to Springer Mountain in Georgia," said Pack, 60.

Pack enjoys the outdoors, but he knew this trek would be unlike anything he had ever done before. 

He camped and slept in a tent 90-percent of the time. He met dozens of people along the way. Other hikers knew him as "Bookworm," his trail name given to him by his wife because of his love for reading. He signed trailhead logbooks with a little cartoon bookworm drawing as a sign he had passed through.

Some finished the journey, while others were sidelined by injury. Pack completed the thru-hike on November 13th, six and a half months after he started.

"Over mountains and through woods and everything else I had to walk through. Bogs, rocks, roots. I am still amazed that I was able to accomplish it," said Pack.

Pack's accomplishment was even more special because of whom he dedicated it for.

"I came up with the idea of doing it for Lewy's body. There are a lot of good causes out there, but I thought Lewy body would be a good thing to do it for because of the fact that a lot of people have never heard of it," said Pack.

Pack admittedly didn't know about Lewy body dementia until his cousin, Tim Perkins, was diagnosed a few years ago.

"I was now aware that there are people with this disease that could never do this [hike], and in a way, it kept me going knowing that I was doing something like that, on those days that I wanted to quit," said Pack.

The pack started on the online journal to document his journey and began a fundraising campaign raised money and awareness for the Lewy Body Dementia Association.

The finish at Springer Mountain, GA was emotional for Pack, but it was also emotional for Perkins, 67.

"I cried. I love all of my cousins dearly, but to think that one of them would go to this extent just to raise a few bucks and get the awareness out there that's so sorely needed? I think it's one of the greatest honors that's ever been bestowed on me, and I am so proud of my cousin," said Perkins.

Devastating Diagnosis

It was Perkins' wife that noticed something wasn't quite right. Soon after, coworkers noticed a change in his behavior.

"One of the symptoms is you walk to the left. I was bouncing off the walls all the time," said Perkins.

He thought his stumbling was due to an inner ear problem. 

"I really thought I would go to the neurologist and they would give me a pill and say see you in six weeks," said Perkins. "When my neurologist told me I had Lewy body, you might as well have told me I stubbed my toe. I had never heard of it, had no idea what she was talking about. (Reporter Heather Ly: Were you scared or thought no big deal?) I didn't know what to be scared of. I had no idea what it was. I looked at her and said at least I don't have Alzheimer's. Woah, sometimes I wish I did," said Perkins.

According to the Mayo Clinic, Lewy body dementia is the second most common type of progressive dementia after Alzheimer's.

Perkins has tremors, problems with balance, anxiety, hallucinations, problems with swallowing, difficulty with speech, and REM sleep disorder which brings on vivid, violent nightmares. 

"I'm on 24 medications, maybe 23. There is not one drug for Lewy's body. Not one. We borrow all of our drugs from other diseases," said Perkins.

Perkins said Lewy's body dementia steals his mind and his words.

"The part of the brain that has something to say, wants to say it, has to go through other parts of the brain, and other parts of the brain will block it. You've got to fight around it. That's where the stuttering comes from. I'll be in a conversation, and I know what I want to say, but I just can't," said Perkins. "You just lose words. Some people don't want to listen to you because they're uncomfortable."

Perkins said he often misplaces things or can't see items hiding in plain sight.

"I put the toaster in the refrigerator, and if you don't laugh at that, you're going to be crying all day long because you do that stuff all the time. I put all my baking utensils in the dog food bucket. Trying to find those things, geez," said Perkins.

On one hand, he has a sense of humor. On the other, he has come to terms with dying.

"It's difficult. It's very sad because I know it's happening, and I know there's not a damn thing I can do about it. It's an absolutely hideous disease. It's stealing us a little chunk at a time. We know it. We know there's going to come a time where I won't know any of my relatives. I'll be virtually a dead mind, and then I will die. It's terminal. There's no way around it," said Perkins.

Perkins has been living with Lewy body dementia for almost four years now.

"I also know there are a lot of people who have 10, 11, or 12 years. I don't count it because I don't give a damn. The only thing that's important to me is today. That's all I have. I don't know what tomorrow will bring. I don't know what Lewy will slap me with next," said Perkins.

Perkins wants to use whatever time he has left to raise awareness about Lewy body dementia in the hopes that someday doctors will find a cure. He hopes people will take time to ask questions, listen, and learn about the disease that is slowly robbing him of his mind.

"People will say [I forget things too], and they think it's well-meaning but it's not. If I just walked into a room and say I can't remember what I was looking for, you hear it all the time, 'I do that too.' No, you don't. The difference is you're not dying from it. I am," said Perkins.

Perkins credits his family with helping him through, especially his wife.

"I know I am putting my wife through hell. She didn't buy into this. This is not something she asked for any more than I did," said Perkins.

He is also a part of an online support group for people with dementia. Click here for more information on the Dementia Action Alliance.

Click here if you would like to contribute to Dennis Pack and Tim Perkins' fundraiser for the Lewy Body Dementia Association.

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