Jim's Journey with ALS

The Beat Goes On

Jim's Journey with ALS — Thu, 09 May 2013 16:13:40 +0000

How often do you think about the legacy you will leave behind? It may not be often but I am sure all of us have at one point in our lives. I am sure if you are dealing with a terminal illness you probably think about it more often than others. But the truth is, we all have a finite amount of time in this world but we don’t all live that way. If we did, I am sure we would witness many more wonderful things than we do today.

I am sure one of the legacies I will leave behind is my love of music. From an early age music was a big part of my life. Starting with my first drum set as an eight-year-old I wanted to be a drummer. My mom and dad always had music on which resulted in many dances occurring in our living room. My older brother and sisters were also very influential in my musical taste. I continued to play drums my entire life including marching bands, garage bands, and rock bands. I have been to hundreds of concerts with my first being Kiss as an eighth grader and my most recent being the Dave Matthews Band. You can pretty much assume if I know you well enough there is a song or a band I relate to you.

It was my love of music and the drums that led me to my most recent speech. Steve Weekes was a drummer and also a member of the Madison Scouts Drum and Bugle Corp. Steve was diagnosed with Lou Gehrig’s disease in 1995 and passed away in 2005. The genesis of Rockin’ for a Cure, a musical benefit for ALS, began in 1999, shortly after Steve Weekes was diagnosed with ALS. While waiting for treatment at an ALS clinic, accompanied by siblings, Monica and John Weekes, Steve decided to create a live music fundraiser to help cure ALS. I was honored to be the keynote speaker at this year’s event a few weeks ago. There was a large room full of family and friends who are all committed to carrying on the vision Steve had and in doing so continuing his legacy. Two other former members of the Madison Scouts have also passed from Lou Gehrig’s disease and their memories are a big part of this event as well. The night was filled with music from youth drum corps, bugle corps, and a great live band. After my speech I stood arm in arm with family and friends as they sang and honored their fallen friends. As I looked to my right I saw Steve’s teenage son and couldn’t help but think of my own children. What a wonderful thing for a child to be surrounded with so much love and support for a father taken way too early in life.

We all have a life to live and in the end will leave a legacy behind us. It doesn’t have to be a benefit event to be significant. It may be as simple as a motto or the way you lived your life that will be your legacy. But if you have surrounded yourself with love, laughter, and a passion for life, the beat will go on and your legacy will forever be alive.

A Man, a Meal, and a Mission

Jim's Journey with ALS — Wed, 17 Apr 2013 14:28:29 +0000

A little event took place in March for the 20th consecutive year called the Evening of Hope. Jeff Kaufman founded this event with the hopes of making a difference for patients and families affected by ALS. I would have to believe Jeff would be proud the way his family and the chapter have carried on his cause. After being the guest of honor last year, I was honored to introduce this year’s guest of honor Steve Gleason. This is a man who like Jeff, has taken his diagnosis of Lou Gehrig’s disease head-on.

What made this year’s event different was that Steve could not make it up from New Orleans so we had to use technology to bring him into the ballroom through Skype. I have to be honest, there were a lot of nervous people who put the evening together hoping and praying that technology would not let us down. What made this perfect is that technology is part of core message and mission that Steve Gleason is trying to bring to the forefront of the ALS community. His hope is that ALS patients realize there is a lot of life left to live even after a devastating diagnosis of ALS. And until a cure is found, technology is now available to help us live life to the fullest and still be an important part of our families and communities. As I stood on stage talking with Steve I almost felt that using Skype to interact with those in the ballroom was better than if he somehow had been able to make the trip.

After the presentation, the applause and the standing ovation was well deserved. Technology did not fail us and it certainly did not fail Steve. It was a perfect example to show that the body of an ALS patient may crumble but the heart and soul will never die. In the past people like Steve could not have participated in an event like that, in fact, many patients were told to just prepare for death. But now hope has arrived through technology enabling every ALS patient to continue living a quality life. Let the scientists and medical community find the answers to slow down and eventually cure ALS. In the meantime I like many others will go on living.

The 750 guests waited to eat their dinner, what they didn’t realize is that their meal had already been delivered. The meal was the message that Steve spoke about. Now it was up to every person in that room to digest the information and put his words into action. A great meal was served that night by a great man who continues to inspire all of us facing great obstacles. A man, a meal, and a message to carry us through another year until the 21^st Evening of Hope in 2014.

Walking in Their Wheels

Jim's Journey with ALS — Fri, 12 Apr 2013 15:41:48 +0000

An interesting phenomenon took place last week. I was lucky enough to go to Disney World again with my family, but that is not the interesting phenomenon. Because of my worsening condition I knew I would not be able to walk around the various parks so I rented a scooter. What came next was a real eye-opening experience.

We have all heard the phrase “I wonder what it would be like to walk in his shoes.” In my case, I had my first experience to walk in the wheels of the disabled. And knowing that my future will be in a scooter of some kind, you can say I was a little frustrated with what I experienced. First of all, I have to give credit to Disney and how they work with handicapped individuals. Whenever we got to a gate their motto was “wheels first”. Those in scooters or wheelchairs went through first followed by those in their party. If only that was the case in the general public. I wish I could say 75% of the general public was aware and helpful to me, but unfortunately it was only about 30%. Most of the time people would cut in front or pay no attention to the fact that I was in a scooter. I spent most of my time trying to avoid hitting people in front of me as they cut in front or simply stopped in their paths. On more than a few occasions people walked right by me in line as if I wasn’t even there. I was astonished at the behavior of so many people towards me, or should I say towards anyone on wheels. I just assumed that everyone like me would bend over to help someone in a wheelchair or a scooter. It is not a pity thing, just common courtesy. By the way, I wish I were talking about kids but I am talking about adults who lacked the common courtesy.

My hope is that it was more the location that caused the behavior rather than the behavior itself. I guess only time will tell as I spend more time on wheels. In the meantime, I hope all of us can improve our behavior and courtesy to those less fortunate, especially those who are walking in their wheels. Remember the Disney motto “wheels first”.

Tears of Perspective

Jim's Journey with ALS — Sat, 23 Feb 2013 19:30:56 +0000

Every once in a while something occurs that makes you pause, reflect, and put things in perspective. One of these events happened while I was flying back home from North Carolina last week. As I was waiting at the gate I noticed four Marines walking up in formation. There were also two highly decorated individuals as well as about six civilians as part of the group. I assumed these young men were heading off for duty. Then came the announcement: ladies and gentlemen these two colonels have the privilege and sadness of flying home a fallen hero (who happened to be a 20-year-old specialist from the Marine Corps.) The young Marines were to go outside and transfer the body onto the plane in a ceremony we would all witness.

Soon everyone at the gate was at the window watching the ceremony outside. It did not take long for me to realize that this young soldier was a year older than my own son Daniel. As I began to become emotional I took time to look around. Every mother inside had a tissue and you could see many of the men with tears in their eyes as well. Not only that but it was almost silent at the gate area. The Marines made their way back into the gate area and marched through the crowd to a standing ovation.

I had never witnessed an event like this before but needless to say it caused an emotional response. I could not wait to get home and hug all my children. I am not the greatest when it comes to flying, but I felt incredibly safe and without fear as I boarded this flight. As we took off I realized that waiting for us in Chicago was going to be a mother, father, and other family members of the young hero on our plane. Little did I know what awaited us. As we pulled up to the gate, there were multiple fire trucks spraying water over the plane as well as about 100 firefighters standing at attention. I could feel the hair on my arms standing up. The pilot made an announcement that unless you had another flight to catch, if we could please wait until after they removed the body of our fallen hero. What happened next was nothing short of amazing. The only people to leave the plane were the two colonels. For the next 20 minutes there was silence on the plane as the ceremony took place on the tarmac. I was fortunate enough to have a window seat and again witnessed the honor deserved by this marine specialist.

I am sure this plane ride home had and an effect on the other passengers as well. I saw it in their tears and expressions on their faces. I wish my two teenage sons would have witnessed this as well. In fact, it would be a good lesson for all high school kids to have witnessed what we did on that flight. Like our fathers and grandfathers before them, we have young men and women who have sacrificed their lives for many of the freedoms we enjoy today. I prayed on the flight home like I always do but on that day I prayed for that soldier and his family. I know reading this cannot duplicate the impact I received witnessing this event, but I hope the tears of perspective I received that day resonate with you as well.

Paralysis

Jim's Journey with ALS — Wed, 30 Jan 2013 01:07:15 +0000

One of the reasons I love public speaking especially to students is that they always have great questions after I tell my story. Recently I shared my story with about 200 middle school children. After hearing about what Lou Gehrig’s disease is and visually seeing some of my physical struggles a young girl asked the following question “is ALS like a road to paralysis.” I had never been asked this question before so my instant answer was “yes that is a good way of thinking about it.” But as I sat at home later that day and thought more about that question, I realized why I gave that answer but more importantly how I could have answered that question better.

Paralysis by definition is the complete loss of strength in an affected limb or muscle group. While this is true about people who suffer from ALS in a physical sense, I believe there are many other types of paralysis which can be just as bad if not worse.

What about paralysis of the mind? If you have ever been touched by Alzheimer’s in your life you know how devastating that disease can be. In a way, an Alzheimer’s mind becomes paralyzed. Physically they are fine yet their cognition, function, and behavior can all be compromised. It is the complete opposite of someone who suffers from ALS. Or how about something as simple as fear? There are many people who become so paralyzed by fear that they are unable to function. Some examples of this would be a fear of flying, claustrophobia, public speaking, or social anxiety just to name a few. I believe in many ways people who suffer from paralysis of the mind are in a worse condition than I am.

Then there is paralysis of the heart. Some people may be so bruised emotionally in life that they are never able to open their heart and love again. Even worse than that is the fact that some people may go through life and never feel as though they are loved. How sad would that be? Unfortunately it can happen often in our society. It is almost as if there is a hole in that person’s heart. We must get people who suffer from this to remember there is one person who will love them forever no matter what and that is God. He is always knocking on your door and if you open the door and let him in, he can fill any hole in your heart.

So a better answer might have been “from a physical standpoint you are correct but ALS will not affect who I am on the inside.” Even though physical paralysis will continue for me, I will never let my mind or heart become paralyzed. Outwardly I may be wasting away but inwardly I am being renewed day by day through my heart, my soul, and my love.

So we fix our eyes not on what is seen, but what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4: 16-18

Desire to Inspire

Jim's Journey with ALS — Fri, 18 Jan 2013 17:01:47 +0000

People come in and out of our lives all the time. If you’re lucky every once in a while someone will not only come into your life but they will change your life for the better. I consider myself lucky because this has happened to me two years in a row. In 2011 when I was desperately seeking a new purpose in life after the diagnosis of Lou Gehrig’s disease someone filled that void by giving me the opportunity to not only express myself with words but also to go out in the world and educate and inspire others to make a difference in their own lives. Then in 2012 my life would change again when Steve Gleason would enter it.

How often have you felt like taking the day off? One could say you’re just not motivated today. How motivated would you be if you had about 10 to 20% of a normal person’s energy level? Or perhaps your arms and legs don’t work and your speech is difficult. Trust me it is much easier to give up. As my condition worsened and fatigue set in much quicker, I found myself becoming more complacent and digging deep to find the motivation and inspiration to march on. Then I discovered what Steve Gleason was doing and more importantly how he was fighting his own battle with Lou Gehrig’s disease. I had discovered my inspiration. He did not know it but his desire to inspire had spread to Wisconsin.

Steve along with his wife Michel, started a foundation called Team Gleason. The mission of The Gleason Initiative Foundation is to:

1. Help provide individuals with muscular diseases or injuries with leading edge technology, equipment and services;

2. Raise public awareness toward amyotrophic lateral sclerosis “ALS” by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries.

It is also Steve’s mission to show that patients can not only live but thrive after an ALS diagnosis. In doing so, he hopes to inspire others to do the same. With a simple phone call from Steve and Michel last year, I was able to partake in a “rebirth” of my own along with my son Jacob on our extraordinary life adventure to Italy. It was a dream come true for my father, myself, and my son. Stories like this are happening all over America and it is because of the motivation and inspiration of one man, Steve Gleason. Now as I go out and talk to various groups or schools, I take a little bit of Steve and his motto of “no white flags” with me. It is my desire to inspire others to never give up in the face of adversity and to live life to the fullest. Please visit www.teamgleason.org and be inspired like I was.

The Winter Soul

Jim's Journey with ALS — Thu, 03 Jan 2013 20:28:38 +0000

Now that winter is kicking in where I live here in the Midwest, usually all I want to do is stop moving and hibernate somewhere warm.

When you live up here, regardless of your desire to push forward in some direction of accomplishment and progress, it’s a slowing down time of year. Movement is restricted by the extra clothes you wear, outdoor activity comes to a near halt, and the precious few hours of daylight every day give way to long nights of darkness. If you live in the South you may not understand this process, but the majority of people know exactly what I’m talking about.

Growing up I was always a big fan of winter. Nothing is better as a child than waking up and realizing school is canceled because there is so much snow. Then the day was spent building snow forts, sledding, or ice-skating on the river with an occasional break to use the bathroom or have some hot chocolate. Today I am still a fan of winter, not so much the season, but rather what I will call “the winter of the heart”. Now winter is more about the defense of the spirit of the quiet, retreating, and slower paced lifestyle. In contrast to the summery disposition which is happy, positive, constantly seeking and professing a spiritual high, the wintry soul isn’t afraid to inhabit loneliness, suffering, and perhaps struggle.

I often focus on the positive side of life, that is, taking the challenges of my life and seeing within them a certain spiritual truth and hope that can carry me through. I would call this optimism or perhaps as it relates to this blog a summery disposition. But we are human after all and there is another side to the summary disposition we would love to have every day. I would have to say that I underachieve in the winter of the soul category, at least in coming right out and embracing and tending to it. Well as I have learned that is not always the healthiest approach.

There is a depth in the wintry soul. There is an authenticity that is somehow connected to true joy. Have you ever heard these two phrases? Blessed are the meek, for they shall inherit the earth; and Blessed are those who mourn for they shall be comforted. There is also this from the book of James:

Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded. Grieve, mourn and wail. Change your laughter to mourning and your joy to gloom. Humble yourselves before the Lord, and he will lift you up. (James 4:8-10)

So which soul are you? Summery or wintery? Or could you see yourself as both? Perhaps it depends on the season, the company in which you find yourself, the defeats or the victories you are experiencing, the rest you’ve had or the lack thereof. Can’t we pursue both the joy and victory of our faith but bear within it and not deny grief and tragedy? Doesn’t the experience of hope often arrive out of the despair of hardship and toil?

As you face the winter months, it’s a good time to consider the winter of the soul. Slow things down. Reassess your life and how you’re living it. Pay attention to what you would cry for. Then wait, don’t act, and see what happens. That last part is the hardest for some of us to do.

Thanksgiving

Jim's Journey with ALS — Tue, 11 Dec 2012 16:25:23 +0000

Thanksgiving is upon us, and for most of us that means tons of food, family and prayers of gratitude. But what if the miracles we’ve prayed for this year, the things we were sure would happen… never did? How can we be grateful for the things that didn’t come our way?

Have you ever found yourself in a situation where you thought it was a sign of something to come? This has happened to me many times but quite often I would shrug them off. Many times I would tell someone about it and they would convince me to see it through. One example occurred when I was dating. It was a blind date with unusual circumstances that I did not want to go on, but a friend convinced me that it was meant to happen. Let’s just say it was a complete disaster, at least the date was. But what I learned was to take chances and eventually, another blind date led me to my wife. I was embarrassed about that first blind date, waiting for a miracle that never materialized believing divine intervention would make itself known to me.

How about that promotion at work we felt we deserved and wanted but never received. Many times down the road it was the best thing that never happened because an even better situation presented itself.

Then I thought perhaps the miracles that didn’t happen for us caused or resulted in a miracle happening for someone else, and it wouldn’t have occurred had what we prayed for really happened. That’s an incredible thought, and one that we should consider whenever we don’t get what we’re expecting. I believe we are all a part of a much bigger plan than we are aware of. We just have to accept what life gives us each day and realize it is a blessing even if we don’t understand it.

So this holiday season, thank God not only for the miracles he’s done for you but for the miracles he’s done for others, too. You may have been a part of one, without ever even knowing about it.

A Dog and the Gift of Giving

Jim's Journey with ALS — Mon, 03 Dec 2012 16:23:05 +0000

It was a little more than four years ago when our family vote was 5-1 to get a new dog. And so began our life with a Golden doodle named Molly. As you might guess, I was the one who voted no. Not because I don’t love animals but more because I was the one who had put down our first family dog and we already led a very chaotic life with our family of six. Little did I know what effect Molly would have on our family.

In the beginning all the kids competed to play with our new puppy, but Jacob is the one who put in the time to go to dog training classes with Molly. But at home we all worked with Molly to help her become the wonderful pet she is today. She really is like my fifth child in that he seemed to need as much attention if not more than they do. One of our favorite things that Molly does is she greets us at the door whenever we get home with a toy. She probably has about 10 babies as we call them. We all try to guess which one she will have her mouth and when we open the garage door it puts a smile on everybody’s face.

So what does this have to do with the gift of giving? First of all, it is the holiday season and the gift of giving should and will be noticeable everywhere. But this is about how a dog daily shows us the gift of giving through their unconditional love of their family and how that affected one of us in a big way. Having a dog is a great example of unconditional love: they love us and in return we love them back. By giving Molly the gift of a loving home she has returned that love tenfold. The one person who did not want her probably receives the most since I am with her all day. We go for walks, take naps, and I pet her constantly throughout the day. She gives me much joy. But the biggest example occurred this month when Evan turned nine. Evan wanted his own tablet for his birthday and was also having a birthday party with about 20 boys. Our deal with Evan was we would get him a tablet if he negated getting presents at his birthday party. Instead we told Evan he had to pick a charity for his friends to donate to. Without thinking Evan said the Humane Society. Without having Molly that gift of giving to the Humane Society would not have happened. From his party Evan was able to donate almost 2 grocery carts of items that were needed. They took his picture and told him he would be in the next newsletter. I am sure when he is old enough Evan will volunteer at that same Humane Society.

My point is that having a dog can and will make a much bigger impact on the family life than we know. And in this case even impact other animals in need of a good home. That being said, Evan does want a cat that he saw at the shelter and so far I have held my ground on the answer being no. Wish me luck!

Weathering the Storm

Jim's Journey with ALS — Sun, 04 Nov 2012 19:45:47 +0000

We have all heard the phrase ”weathering the storm.” But what does it really mean and what tools do you use to weather the storm? The storms in your life may be big or small. Some of the storms may be just a part of life, and yet, we may bring some of those storms upon ourselves. But no matter what, we always find a way to cope and eventually weather the storm.

Take for instance natural disasters. We have seen these occur throughout history and some very recently. Along the East Coast and the Gulf of Mexico there are hurricanes. In the Midwest we have tornados. And in the West they have earthquakes and wildfires. No matter what the natural disaster I am sure that those affected the worst immediately were thinking how am I going to get through this. In that moment there is despair, hopelessness, and confusion as your life is turned upside down. But what we have seen time and time again is that people come together and help their fellow mankind. In time houses are rebuilt and communities are restored with the help of others.

Some of the storms are just an everyday occurrence. If you work outside the home I would venture to say you have uttered the words “I have to put out some fires.” If it is a small enough storm you take care of it on your own but many times you tackle it as a team and come up with a solution and “put out the fire”. Perhaps you’re dealing with a personal tragedy like the death of a loved one. I like many of you have felt that, and as the tears were flowing I immediately thought of how am I going to get through this, how am I going to weather this storm. In those times many of us rely on our faith to see us through that darkness, but we could not make it without our family and friends to help us cope with the emotions at that time.

Unfortunately, some people actually create their own storms through the actions or decisions they have made in their lives. How do they weather the storm? Some may never get the help they need to be able to ever weather the storm that was created. But some do find the courage to right this ship, accept responsibility and forge ahead usually with the help of others.

When I received my diagnosis of Lou Gehrig’s disease, I immediately felt I had a storm that would swallow me up and spit me out. In many ways I can say I am weathering the storm day by day. Many people who are in a difficult situation find this coping mechanism the only way to get through the day. Unlike most of you, I have a pretty good idea of what the future holds and because of that, I have learned to live for the day. That doesn’t mean I have given up on the future, but rather, I appreciate the gifts that God has given me on that day and take nothing for granted. But I could not weather this storm by myself. As you know by now, I have my faith, family, and friends who help me daily. I have had so many people step up to help make my and my family’s life easier. People like Beth, Sara, Randy, Vicki, Julie, Mark, Carrie, and so many more who give me rides, bring us food, or help with some light housework. I could not be weathering this storm without them.

So the next time you are faced with adversity or a mountain that seems too high to climb, remember you can and will weather that storm. You will find strength were you had none, and you will find that your family, friends, and neighbors will help you overcome the obstacles you face along with faith at the core.