On Now
Coming Up

News

Print
RSS

Fighting through the pain

Posted Sep 2, 2012

Jaguars college scout Marty Miller shares his story of living his life with Parkinson's disease.

Jaguars college scout Marty Miller was sitting in Heritage Hall on the campus of Southern California in October of 2008, waiting to speak with then-head coach Pete Carroll. It was a normal day for Miller, part of his duties of scouring the west coast for potential NFL talent.

As Miller waited patiently to discuss with Carroll the Trojans current roster, he noticed his left middle finger began to shake a little.  He laughed it off at first.  There’s no way he could be nervous. 

As the son of a former NFL personnel director, he grew up around football, had met his share of big-time college coaches and players and NFL players during his time.

“All I could think was this is a little peculiar,” Miller said.

During his meeting, Miller’s hand continued to shake.  A couple thoughts popped in his head.  Was his diet a little off? Did he not exercise enough during the week? Miller concluded his meeting and made a mental note to maybe check on it during his break in February when he returns to Jacksonville.

Fast forward to March 2009, back on the campus of Southern California where Miller was attending the Pro Day of highly-touted quarterback Mark Sanchez.  As part of the process, interested teams meet with the player in a one-on-one setting either before or after their workout.  As Miller waited for Sanchez, a slight tremor in his hand startled him.

“What the heck is going on?” Miller said.  “I couldn’t believe it was happening again. I talked with him and didn’t really notice it a lot during our meeting.  After it was over I knew something wasn’t quite right with my body.”

 

What causes a tremor?

Following the draft in 2009, Miller traveled to Orlando for the annual BLESTO scouting meetings.  An avid runner, Miller was out on his daily run when he noticed the shake was becoming much more “significant.”  He hurried back to his hotel room and began researching on the Internet.

His mind was racing as he googled ‘tremors.’  At this point he knew he was having shakes or tremors.  There was no denying that fact.  He began to pore over the information. 

Miller started to eliminate certain things from his list, but there were several mentions that caught his attention.  There was one he wasn’t prepared for.

“I was telling myself there is no way I could have Parkinson’s disease,” he said.

As he scrolled the page, he checked the symptoms.  He recalled the times he thought he had cramps in his feet and calves, the nagging muscle issues he had on the left side of his body. 

Miller returned home to Boise, Idaho in June and decided to discuss the situation with his wife, Kerinda, while on a short vacation, but he waited until the taxi ride to the airport on the way home to broach the subject.  He didn’t want to concern her because he really had no definitive answer.  He just knew his body was not acting normal.

“He told me his thumb had been moving and he couldn’t get it to stop,” Kerinda said. “I remember feeling worried, but I was also amazed he hadn’t told me about it before. We talk about everything, and the fact he hadn’t talked to me about it earlier had me even more worried.”

The two decided to see a neurologist in Boise.  The doctor put Miller through a battery of tests, trying to rule out other possible diagnoses.  At the conclusion of the visit, the doctor had his suspicions and suspected Parkinson’s disease, but referred Miller to a movement specialist neurologist.   

Kerinda remembers the meeting and the various options the doctor gave about her husband’s condition.  The information brought her to tears. 

“I remember researching all the other options (besides Parkinson’s) and begging God that Marty would not have them,” she said.

It was a meeting that got Miller’s attention.

“I had already prepped my wife, but we both walked out of the office and were like, ‘Wow,’ Miller said. “I told her I hoped it was Parkinson’s disease other than some of the other things he mentioned.  The other things he mentioned were worse.”

It didn’t take long for Miller to get his answer after a visit to the movement specialist.  She confirmed his early fears.

“She told me I have early onset of Parkinson’s disease,” he said.

Miller and his wife sat in the office listening intently to the doctor, but their minds were racing.  One of the key messages was that the disease is not a death sentence.  Each person’s body reacts differently because it is a multi-symptomatic disease. 

“I was relieved with the final diagnosis,” Kerinda said. “That diagnosis in and of itself has serious ramifications and we had to deal with it and process it. Still, I was glad to know that I would have the gift of time with Marty. Until that point, I didn’t understand what a gift time is.”

The specialist wasn’t able to tell the couple what exactly was going to happen next, as symptoms vary from person to person.  She told Miller that in most cases at about the 10-year mark a person will have to make some alterations to their lifestyle. 

This was tough news for a man who lives 170 days a year on the road, traveling the country to evaluate prospective NFL players.

Sharing the diagnosis

Kerinda handled the news exactly how her husband figured she would.

“She’s a strong person,” Miller said. “I figured she would worry about me more than I would worry about her.  She doesn’t let things get to her and she never batted an eye.”

Kerinda made a conscious decision to take her feelings out of the equation.

“There may be a time for grief in the future, but I don’t want to waste this precious time I have right now mired in sadness,” she said.  “We have a beautiful life together, and I will be thankful for each day, as long as I have Marty by my side.”

Miller never thought about hiding the diagnosis.  He learned through research the key element of dealing with the disease is to eliminate as much stress as possible. 

“It would only bring on more stress to be thinking about trying to hide it,” he said. “I decided I was going to tell anybody who wants to know.  No one would have known unless I told them.”

After speaking with several family members, Miller knew he had to reach out to Jaguars general manager Gene Smith.  Being around Smith since 2002, Miller never worried about Smith’s reaction or if his job would be in jeopardy.  Smith, who has two daughters, always placed family as a priority.

“I told him I noticed some medical issues going on with my body for several years,” Miller said. “I really didn’t know what they were but they became a little more evident to me and I needed to get them addressed.

“Gene was Gene.  He was to the point, telling me this shouldn’t affect anything.  He asked about my kids and told me the team will support me in any way possible.”

Miller’s words were tough for Smith to hear.

“It was a difficult conversation because I know how important Marty’s family is to him,” Smith said. “He was obviously very concerned about his health and their future. As a husband and parent myself, it really hit home.”

One thing Miller did request was an opportunity to address the personnel staff about his condition prior to the 2009 training camp.  The only people in the building that were aware of Miller’s diagnosis were Smith, director of player personnel Terry McDonough and pro scout and good friend Chris Driggers.

Miller wanted to be honest and open with a group he calls “family.” He didn’t want people wondering why he was acting a certain way or looking at him differently.  He spent days rehearsing the words in his head. 

“Three minutes into it I started welling up.  I was Dick Vermeil,” he said.

The message was simple and to the point.  Miller told the group he had no idea what the future holds for him but one thing was certain.  He would not die from Parkinson’s. 

“I was struggling to get the words out,” Miller recalled.  “I was having a hard time articulating things.  No one in the room had a clue other than the few I had told.  You begin to realize how long you have been with the people in the room.  Getting through that was extremely tough.  I think it took a load off of me.”

Driggers, who is in his 18th season with the Jaguars, remembers the day like it was yesterday.

“It was tough because you are seeing someone you care about so much struggle,” Driggers said. “It was like watching a family member.”

As the leader of the department, Smith was proud of Miller’s resolve.

“I admire Marty for having the desire and fortitude to address the staff and to educate us about the motor symptoms of Parkinson’s disease,” Smith said. “We have a close-knit staff and it was an emotional experience that had a profound impact on all of us.”

 

Protecting his children

One of the main focuses for Miller in the initial days after being diagnosed with Parkinson’s was his children.  He has been honest with people about his condition, but talking about his eight-year old daughter, Channing, and five-year old son, Gannon, stops him in his tracks.

Questions raced through Miller’s head when he thought about his children.

Will this be embarrassing to them?

“I think we all have an image of your dad as like this powerful individual who is in control of everything,” Miller said. “You are a man and you’re in control.  Parkinson’s is so involuntary with the things that happen to your body, so it’s hard picturing how my kids would treat me.

“I don’t want to be an embarrassment to my kids.  I don’t want to be an embarrassment to my wife.  I was so worried about that.”

Shortly after the time of the diagnosis, he hatched a plan of how he would make his children aware of what their “daddy was dealing with.” 

Actor Michael J. Fox was diagnosed with Parkinson’s disease in 1991 and has worked tirelessly to create awareness for the disease through his foundation, the Michael J. Fox Foundation. 

During his research, Miller had taped an interview Fox did on the David Letterman Show.  Sitting in their living room in Idaho, the Miller family watched the interview.  Prior to turning it on, Miller had prefaced it by saying he thought it was an interesting interview.

Seconds after it ended, Miller asked Channing her thoughts.

“That guy shakes like you a little bit dad,” Channing said. 

Miller had suspicions that she had been aware something was different.  His son was too young to notice. 

“I basically said this is what dad has,” he said. “We won’t get into a lot of specifics of it but it’s called Parkinson’s disease.  As I get older some of the aspects of my body control, some of the things I do, I won’t have much control over.  So I shake right now, I will shake a little bit more.

“I might have trouble walking at times.  My speech might be slurred from time to time.  That’s just how your dad is going to be.”

After feeding her with information, he asked his daughter if she had any questions.

“I think it’s cool because you will be the unique dad,” she said.

 

Living with Parkinson’s

There is not a cure for Parkinson’s.  The main focus of the medicine is to control the symptoms, alleviate the pain and have people live a more comfortable life.

According to the Parkinson’s Disease Foundation, slightly more than one million people have the disease in the United States, with approximately 60,000 more diagnoses each year.  An estimated seven to 10 million people worldwide are living with the disease. 

Miller is one of only four percent of people diagnosed with Parkinson’s before the age of 50.

Miller has been advised he hasn’t reached the stage yet of having to take the most common form of drug to treat Parkinson’s symptoms, Levodopa.  Several side effects are connected to the drug but it’s inevitable that he will need to take it.   His primary doctor, Michael Okun, is in Gainesville and he visits a couple of times a year to check on the progress of the disease. 

So far, the doctor has been pleased with the results.

“They grade you on your coordination skill,” Miller said. “He said my tremor might be more evident but we can do some things to attack the tremor.  I’m not really showing signs of having to slow down my lifestyle.  We can work together to tweak your medicine when it’s needed.”

Miller looks back now and notices in retrospect some of the telling signs that he had the disease.  He remembers buying a pair of running shoes and the salesman telling him he had a “funny running style.”  He laughs when discussing his yearly media guide photo.

“My smile is crooked,” he said. “You can tell that the right side works better than my left side.  That had kind of been my smile for a decade.  Thinking back on it, those were telltale signs that Parkinson’s was there.”

From the outsider, not much has changed for Miller since the initial diagnosis. He is not one to complain about pain, but it’s there.  He deals with constant muscle fatigue in his legs, calves and thighs.  All the pain is a direct result of his left side “always firing.”

Sometimes he lies down in the evening and thinks to himself, ‘Wow, today was tough.’  The tremors are constant, annoying and uncontrollable.  The medication can slow them down at times but it becomes a nuisance. 

Not all people with Parkinson’s disease have tremors; instead, some might have other symptoms including problems with balance and walking and slowed movements.

Miller sleeps well and through the night but deals with pain in his foot first thing in the morning.  He is able to walk out the early morning cramps and able to get started with a little help from medication.

“His mental and physical toughness is something that gets lost because he pulls it off so well,” Driggers said. “There are some obvious demands that come with the job that may be compounded for him, but he never complains. It’s important for his children to know how tough their father is.”

 

The Future

As Miller relaxes inside EverBank Field at the start of the Jaguars 2012 training camp, he is asked about his future.  He pauses and takes a deep breath.

“You are obviously curious what life is going to be like,” Miller said. “Sometimes I see things on television and I’m very encouraged and then there are times I sit there and I’m like, ‘Wow, that’s going to be me.’ But if that’s what I’m like then that’s what I’m like.  I won’t worry about it.”

Miller doesn’t have to look far for inspiration.  Two of the more famous people with Parkinson’s disease are Fox and former boxer Muhammad Ali, but Miller has found so many more. 

Miller was reading a story in a newspaper and came across the story of 64-year old John Ball, who heads the Team Parkinson organization which raises awareness for the disease.  Ball was diagnosed with the disease at age 39, the same age as Miller, and his kids were also five and two at the time of the diagnosis.  The two exchanged phone calls and Miller has met up with him several times.   

Ironically, about the same time Miller had thought he had Parkinson’s, he turned on ESPN one night to see former NBA player Brian Grant announce he had been diagnosed with Parkinson’s. 

“It was eerie but it was the confirmation,” Miller said. “I had self-diagnosed it through the Internet and now I’m watching this guy on television describe some of the same things I’m going through.”

Fox has authored three books detailing his life with Parkinson’s.  A smile comes across Miller’s face when asked how many he had read.

“It might not have been the best book for me to read two days after I was diagnosed,” Miller said. “I think it’s a great book for someone that wants to be encouraged. It’s much easier to read now.”

While joking, Miller doesn’t shy away from the Internet but makes a conscious choice to absorb only the positive information. He doesn’t allow himself to live in the future; instead, he focuses on every day.  But he knows a transition will have to take place. 

“I’m a realist,” Miller said.

Miller talks about the possibility of moving into the front office for a team or maybe getting out of football completely.  It’s hard to picture his life without football and the road.  He spent more time in 2011 on the road than any other year and wrote more reports than he had ever written.

“I told Gene in our initial conversation that I know my body the best and I will let him know when I feel like a detriment to the organization and the team,” Miller said. “I’m hoping I’m not delusional about it.  I should be able to tell. 

Until that time, it’s full steam ahead. 

“I have a passion for football,” he said.

 

A man’s dream

The Millers have decided to not fret about the future and continued to make memories each day.  It’s the only way they have ever lived and they don’t plan on changing.

“I don’t know what the future holds,” Kerinda said. “I have complete faith that between Marty and myself, our family will be provided for and cared for.  It will be a future filled with love, faith, friends and family, and I couldn’t ask for anything more.”

Kerinda asked her husband a few years ago if he had a bucket list, things he wanted to accomplish before it might be too difficult.  Miller doesn’t want to think about the possibility of not being able to live his life but there is something he always comes back to.

As his daughter Channing continues to grow, Miller can’t help but look ahead.  He has thoughts of walking her down the aisle, as any father would. 

“I want to make it a great moment for her,” he said. “I don’t want it to be, ‘Here comes the bride and the dad who is taking all the attention away.’ Whether I do it in a smooth fashion or whether I do it in a shaky fashion I will still do it.”

Comments

 
blog comments powered by Disqus