Peachy

When my father was diagnosed with ALS, I had already met the beast so I somewhat had an idea of what we were in for. This is the story of "Peachy"...Warren Peterson.

When my brother first met his wife, I was blown away by her big, bright blue eyes. They were the first thing that caught my attention...that and her killer handshake. (Gotta love a woman who can shake a hand without trepidation) When I learned more about her and her family, I realized that these two were meant for each other. My wacky brother had not only found his soul mate, but he also found a match in both her dad and her brother, Warren.

I remember when my sister and I first saw Warren's picture. We looked at each other and said, "Damn, Lee! Your brother's hot!!" Lisa Beth said, "Yeah, I know."

Warren had eyes like Lisa. (No, I'm not talking in third person...my brother married a gal named Lisa...but we call her Lee or Lisa Beth in order to keep us straight) He was full of life and he was equally as crazy as my brother was. I never thought Jay would find people who got his humor like we did....but he did...and he snatched that gal up and made her his wife.

Lisa's family became an extension of our own. We often celebrated things together and we grieved together when their was a loss in one of the families.

Warren and his wife Sheri have two amazing kids: Janie-whose bright blue eyes can pierce right through you and "little" Warren: the boy I loved talking about Harry Potter to when he was younger. (That kid is so damn smart) From the outside, they seemed to have it all...until the Fall of 2008.

I asked Lisa to recount Warren's battle with ALS and with her permission and the blessing of his family, here is his story...

Around Thanksgiving of 2008, Warren started slurring his speech. It wasn't subtle...anyone could hear it. He also began twitching in his arms, neck and chest.

The first of many doctors to see Warren was his family doctor who then sent him on for a scan of his spine to check for a pinched nerve. When the test results came back negative, Warren blew off his symptoms and went about his business.

At a doctor's visit for his son in early 2009, that same family doctor asked Warren about his symptoms. After hearing that Warren was still experiencing the same symptoms, the doctor sent him off to a neurologist (doctor #2).

With Lisa at his side, Warren went to see the neurologist who did a physical and then suggested he come back for an EMG. At that point, he gave them no indication what might be going on.

In February of 2009, Warren and his crew went back to the neurologist to have the EMG done. Halfway through the test, the doctor stopped and sent them away. He said that Warren needed to go to Loyola to continue the test. Later that same month, their family doctor told them they needed to go to the Mayo clinic to rule out things such as ALS. At the mention of the disease, the family went into panic mode.

In April of 2009, Warren and his family made the journey to Mayo for a week of testing. Warren drove. Even though they were scared, Warren still managed to joke around and make his family laugh. When all the tests were done, there was no conclusive diagnosis but the doctors thought they were dealing with ALS. The doctors at Mayo suggested they go to Northwestern and see Dr Sidique so he could check Warren's symptoms, administer another EMG and do more testing there at the clinic. At the end of that week at Mayo, Warren was unable to drive the group back home. Deterioration had begun.

In July of 2009, Warren and the family went to Northwestern and they pretty much agreed that they were looking at ALS. At this point in time, Warren is still walking and driving. He even enrolls in fall classes at the college.

Fall of 2009, Warren is still driving but he drops his classes mid semester. He sounded intoxicated when he spoke and it became harder and harder for him to speak in class. And then the falling began...another classic symptom of ALS. At this point, Warren's family pretty much starts feeding him as it was difficult for him to hold a utensil, let alone cut food up with one.

That Fall, Warren is still driving but a custom made wheel chair is ordered for him. He is now having difficulty eating and swallowing...Insert feeding tube here.

In early Spring of 2010, the wheel chair arrives and more independence is lost as Warren stops driving and walking. He moves out of his bedroom upstairs and into a room on the main floor of the house.

Easter of 2010, Warren ate his last meal via his mouth at his sister Lisa's house. From that point on, he only does feeding tube feeds. That same Spring, Warren begins to need full time care as he was unable to transfer on his own. At first, his parents, his wife and his sister served as his caregivers but by the Summer of 2010, the family can no longer do it alone and caregivers are brought in. Thus begins the loss of privacy.

Fall of 2010, Warren dresses up as a tank and attends Janie's Halloween party at school. As he entered the hallway, the children parted to let him through. From what I hear, it was an awesome sight to behold.

Around Thanksgiving of 2010, Warren gets pneumonia which is usually fatal for ALS patients. Many patients die once they get it...but not Warren. That guy had 9 lives. He recovered but he now has to wear a bi-pap machine at night when he sleeps. It is around that same time that overnight care is brought in. His wife can no longer do it alone. She works a full time job, is raising two children and up until that point, was caring for her dying husband on top of it all.

Valentine's Day of 2011, Warren goes to Janie's school for her Valentine's Day party. It would be the last time he leaves his home. That same month, Warren goes into hospice care and his pain is unbearable.

By March/April of 2011, Warren is in extraordinary pain. Morphine can't even touch it. Despite the pain and what he's going through, Warren still emails people and is using a specialized computer that is worked by his eyes. He's using the bi-pap almost all day now and breathing has become more difficult.

In May of 2011, Warren is taking unheard of amounts of Morphine and Lorazepam. The difficulty breathing has become more extreme and the family is unable to manage his pain. His wife now works from home instead of leaving the house to go to the office.

Later that month, Warren stops using his computer. The family cannot understand what he wants or needs. Only gibberish is coming out of his computer. As the month continues on, his feedings stopped, as his stomach could no longer tolerate the input. When the shakes when into the tube, they'd come right back up.

That same month, pain medication is administered around the clock, sometimes every 10 minutes. He now requires two caregivers to care for him and his bi-pap doesn't leave his face. Ports are put into his arms and legs and injections are given directly into those ports. Shortly after, the port sites swell and harden.

Hospice is now coming every day, sometimes twice a day. They also come in the middle of the night when they are needed.

By the end of May/ early June, Warren is almost comatose. He will not rouse or awaken though he did have one episode where he was completely coherent and attempted to communicate with his family.

On June 6th, 2011, Lisa (who had been at her brother's side day in and day out) went home after the night shift to take a shower at 8am. At 10:00, Sheri called Lisa to say that Warren was awake. He had just received a sponge bath and he just woke up. His parents, his wife and his sister communicated with him. He seemed with it and indicated that he was not in pain. The family stayed with him and told him loving things.

At 11:00am, everyone left the room except Warren's father and the hospice nurse. Little Warren had come home from a morning shopping trip.

On June 6th, 2011 at a little past 11:00am, with only his father and nurse present, Warren quietly passed away. His body who had fought so hard for so long decided enough was enough...and he was gone. The family came back into the room, including his young son, to say goodbye.

June 6th, 2011 at 3:00pm, Warren's body was taken from his home for the last time and was taken to the funeral home.

Throughout this long battle, I watched as Lisa suffered along with her brother. This disease doesn't just kill the patient...it kills the family as well.

Each time I saw her, Lisa had broken down a little more. The big smile she always had was gone. There was a fake one in its place. She tried to hide her pain but you could see it...plain as day.

On June 6th, 2011, not only did Warren "Peachy" Peterson die, but the sparkle in my sister-in-law's eyes was extinguished as well. That brightness that always shown around her was no longer there. Her heart had broken as a void was now present in her life. For Lisa, Warren represented the voice of reason, a genuine force of strength. He was her safety net and their bond was unusual and partially forged by the previous loss of their brother Paul.

The one thing Lisa Beth wants the world to know about her brother is this: he was her hero and it wasn't just because of the ALS. He NEVER ONCE complained about having or dealing with ALS. Not ever. There may have been inner demons but he held it together for everyone else. His body may have been dying, but he was strong for his family. He remained easy going right up until the end.

The world lost a caring son, a loving husband, a proud father and an extraordinary brother the day Warren passed.

My heart broke for the Peterson family as this disease played out...but my heart was breaking for other reasons as well. Their journey with Warren was seen differently from my eyes. In his passing, I saw my future...and I was scared as hell.