Life after Being Diagnosed with ALS
I have been asked many times how my life has changed since being diagnosed with ALS. I will try to put it in simple terms, and hopefully people will get an idea of what all ALS patients have to deal with everyday. I will start with how I first suspected something was wrong.
Before the Diagnosis: It was early 2007 after I had met the most wonderful woman, Debra Cundell. Itís a long story how we got together, but from the first date we knew we were destined to be with each other the rest of our lives. We had decided that we would make sure that our health was good, and that meant getting a physical examination, etc. I made a separate appointment and went to our family doctor. I told the doctor that I was suffering from cramps all over my body. She recommended I drink more water and Gatorade.
I drank more water and Gatorade for more than a year and I was still having problems with cramping. I also noticed that I was getting very cold in the winter and that was not typical. So I decided to insulate under the house. I went to the back bedroom where the trap door to underneath the house was. I jumped down into the crawl space to evaluate my project. When I went to climb out of the crawl space, something Iíve done many times before, and my right arm wouldnít allow me to push myself up. After many tries, I jumped up on a couple of boxes, which allowed me to crawl out from under the house. I sat there for a while really wondering what was wrong with my right arm. That weekend I was going pheasant hunting and was excited about seeing all my friends. I left Saturday morning to make the drive to Maupin, still trying to figure out why my right arm was so weak. The first shot I got at a pheasant, the shotgun blew out of my right hand. This was not only weird but dangerous. I was very careful the rest of the day and had no further incidents. Sitting around the campfire at night was always fun and Carl Pollack and I got into a chugging contest with some of Carlís sons friends. Bringing the beer glass up to my face, I noticed I was pouring it all over myself. This has never happened before. Upon returning to Bend, I told Deb about my experience. We agreed it was time to make another doctor appointment. All that day, at the lab, I noticed that the fingers, on my right hand, felt really fat. I made an appointment with our family doctor later that week.
At that appointment, I told the doctor about my experiences and that I had also noticed some twitching in my arm and shoulder. The doctor got a very worried look on her face and told me it was time to see a neurologist. She thought that this was a good idea because it could be a virus affecting my nervous system. We made the appointment for the next week. It was now May of 2008 and the weather was warm in Bend, and I was riding my Harley almost every day. On the day of my appointment with the Neurologist, it was warm and I rode to the appointment.
The Diagnosis: I sat in the doctorís office and I wasnít really nervous, but I needed to find out what was going on. The doctor began his exam checking for twitching in my muscles, and asking many questions about the muscle cramping. When I told the doctor I was getting muscle cramps in the weirdest areas he was concerned. I was getting muscle cramps in my shoulders, legs, fingers, along my rib cage, and even behind my ears. He immediately asked to see my tongue. After he examined my tongue, the expression on his face changed to a very concerned expression. He left the room for a little bit and came back with another doctor. They looked at my tongue again, and now his expression was despair. The doctors left the room, and when the original Dr. returned he asked to see my tongue again. This time, after examining my tongue he pushed back and told me he had very bad news for me. He was almost certain it was a motor neuron disease called ALS. I wasnít sure what ALS was, and its then he told me it was most likely Lou Gehrigís disease. He followed that shocking statement with, you can get a second opinion, but Iím certain itís Lou Gehrigís Disease and I think you only have a couple years to live.
Iím a pretty strong guy, but I guarantee you that statement stunned me. He then told me that he wanted me to go immediately to the hospital for more tests. I called Debra at work, and told her I had more tests scheduled for that day. I went out to the parking lot to get on my bike and I just sat there kind of numb. The best way to explain the feelings was that it felt like I just awoke from a deep sleep. It was like I was still dreaming. It was a while before I got the strength and confidence to start the bike and ride the short distance to the hospital for the tests he ordered.
I can remember that that ride to the hospital seem to be the longest I have ever been on. But I got to the hospital, checked in and they were ready for me. After about an hour of tests, it was time to ride back to the lab. I knew that I wouldnít be able to tell Debra anything about the diagnosis until later that night. At about four oclock in the afternoon, It was time for me to go home. I was to meet the contractor, who was building my shop, at the house. After a short conversation with the contractor, he left, and I just sat out in the shop, and thatís when it all hit me. I was almost certain that the neurologist was wrong, but again, the neurologist said he was convinced it was ALS. The neurologist even told me that after the tests were received back, the next appointment, I needed to bring Debra with me, so that he could help us through the news of getting a terminal diagnosis. I knew that evening at Debís house; I would have to share the diagnosis with her.
I had a few hours before I would have to be at Debís house. So I cracked open a beer and lit up a cigar. I just sat in the middle of my new shop wondering what just happened to me. I had decided to build the shop, so once I was retired, I would have a place to work on projects. Now the shop seems like the only place I could be and wrestle with my feelings. After all, I was in my man cave!
I was very emotional, and I shed a few tears. I opened another beer and decided it was time to call my great friend, Dave Regnier. Dave and I have had a wonderful friendship over the years, and we can discuss anything at anytime. So he got on the phone, and I told him I had just received a terminal diagnosis for a nervous system disease, and I only had two years left to live. Dave was shocked, but he was very understanding. Dave and I have been through a lot together, and today I needed his strength. We talked for quite a while, and I told him that I was going to be telling Deb, that night. As we talked, I cracked open my third beer and lit up my second cigar.
Note: Many people will never have to struggle with this situation. I know I need to tell Deb, but I need to find a way to soften the blow. My mind is continually trying to find ways to talk with Deb and also assure her that I am determined to beat this. Right now the information is so new, I really havenít let the diagnosis settle in.
Life after Being Diagnosed with ALS
In the last segment I discussed what it was like to receive the news of my terminal diagnosis and how to tell Debra. In this segment, I will try to explain how I broke the news to Deb, and how we decided to tell our family and close friends.
Telling Debra: Debra lives in town, and I live south of town by about 13 miles. The time it takes to drive to Debraís house gives me some time to think about how I will break the news to her. To be honest, this is the first time in my life; I have had a problem figuring out how to express myself to anyone. Having run my own businesses for 25 years, I donít usually get locked up in a situation.
I usually listen to Sirius Blues Radio on the way back into town. Tonight I know I must pay attention to my driving and manage my distraction. I live on a hill and I always check out the beautiful scenery of the mountains and the valleys, on the way into town. Tonight I have tunnel vision, and I see nothing more than a two-lane blacktop. The radio is off and Iím deep in thought. How do I tell Debra the news, and still leave hope of the wonderful future we planned together? It takes about 15 minutes to get to her house from my house, so I have time to sort some things out. A funny thing happens to me on the way into town, my mood changes from devastation to determination. Iím determined to beat this thing, I donít know how I will do it, but I am resolved to do it. This will help me as I present the situation to Deb.
I get to Debís house and she is cooking dinner. The smell of the food is fantastic. Deb is a great cook and we decide to talk about my Doctor appointment after we have a nice dinner.
Deb and I sit on the couch, and I grab her hand. I start by telling her I had some very bad news today. I explain that the Dr. told me I have ALS, and that ALS is known as Lou Gehrigís disease. Tears start coming to my eyes, and I tell her that the Doctor told me he thinks I only have two years to live. Deb is stunned and we just stared at each other. I know that Deb is a strong person, but this information has rocked her. I slide closer to Deb, and hugged her. Both of us began crying, and at the same time, we both said we will beat this thing. We didnít talk about our future plans being ruined. We talked about our future being bright and how we would fight this thing together. There is a peacefulness that comes over us that I canít really explain.
We never expected have this type of conversation, and you never expect to have this type of diagnosis. Together we talked about what ALS and Lou Gehrigís disease is. I remember we talked about it being a nervous system disease with no cure. But Deb and I have never let anything beat us down. Deb and I share everything, and we both feel we have the strength to stare this demon in the face, and attack. I also remember how much the depth of our love grew at that time.
I remember when we went to bed, we just held each other. It was the deep emotional silence and painful reality that ran through our bodies that evening. I could feel her staring off into the distance, and my mind was racing trying to plan how I was going to beat this disease. I remember telling Deb, I didnít want to die, and just saying that out loud, made me more determined. I donít remember falling asleep, but I do remember talking with Deb in the morning. We talked about how we slept, and both agreed, our minds had kept us up a lot.
Telling our Friends and Family: We got some coaching from the local ALS Society before we tell our friends and family. This helped a great deal, because youíre not supposed to tell your parents the same way you tell your brothers, sisters, and friends.
I knew I just couldnít pick up the phone and call my family. I would have to notify the buyers of my laboratories too. I figured I needed some time to sort this stuff out. I told Debra that I was going to take the next week off. I was going to my favorite spot on the Deschutes River at Maupin in our RV. I knew I needed to do this on my own, and is much as I wanted Debra to join me, I just needed time alone. I needed the time to plan my attack. The Deschutes River at Maupin has so many memories of my friends and me tackling some of lifeís hurdles while camping and having a few hundred beers. I called Debra every day, but I was alone with my thoughts a lot. I came back from that week pissed off that something like this could happen to me, but resolved more than ever to beat the bastard.
I decided to practice by calling the buyers of my laboratories. I called them when I returned to town. I thought it would go very easy with them. I was wrong. As I started to tell them what my diagnosis was, I broke down, and had a hard time with the conversation. I think it was because this is the first time I have had to tell someone, and just hearing it come out of my mouth was very emotional. I finally made it through the conversation and when I hung up the phone, I just sat there stunned again. It was a few minutes before I got my composure.
I now know that it will take a lot of preparation on my part, to notify my friends, family and coworkers of the diagnosis. I felt that once I had some time to think it out, I would be able to talk without breaking down. When you are as close to your family, friends, and coworkers as I have been, you have to talk to each person differently according to their personality and our relationship.
In part 3, I will explain how I talked to family friends and coworkers. I also needed to talk with longtime customers.
Life after Being Diagnosed with ALS
In the last segment, I explained how I broke the news to Deb. That was one of the toughest things I have ever done in my whole life. In this segment, Iíll explain how I told my family, close friends, coworkers, and longtime customers.
Iím not looking forward to our trip to Portland and telling my family. I know it has to be done, but Iím really not sure how to present it to them. I must also tell my sister Mary, but she lives in Park city Utah, and Iíll have to notify her by phone. I spend a couple of days preparing myself.
I decided to make the call, to my sister, Mary, in Park city Utah, before I make the trip to Portland. I do this the day before we go to Portland.
Mary picks up the phone, and we discuss other things. As I prepare to tell her my story. I tell Mary, prepare yourself I have some bad news for you. Mary is a very inquisitive person, and I can hear a change in her voice, and the seriousness, we donít often share. We always talk about business, working, and generally catch up on things. Today, I sense she knows something else is going on.
As I began to tell her, I feel myself becoming emotional. I know everyone in the family knows I have been going to the doctor a lot lately, but today I have to tell them the reason. I said sis, I have been diagnosed with Lou Gehrigís disease, and the doctors have given me two to three years to live. It seemed like an eternity before she said something. I think the first thing she said was, are the doctors sure, and you must have been misdiagnosed. I know sheís having trouble with this information because I can hear it in her voice. Oh my God, she said, are you OK? I said yes, I was, but I really wasnít. Mary goes immediately into attack mode. John, she said, we will find a way to beat this. I know my sister, and she will do exactly that. After a time talking about the disease and how we went about getting a diagnosis, itís time to say goodbye and get off the phone. I hated ending the phone call; I know she will break down, just as I will. I feel numb after we ended the call, but I also know, she is on my side and will help me beat this.
Telling the Rest of the Family: Deb and I make the trip to Portland, and we are both pretty quiet. We reassure each other that everything will be OK. I wasnít able to contact my brother, Richard. Today, we will meet with my parents and my other sister Paula, and my brother-in-law Larry.
We meet at my parentís house, and I had already told my sister that the meeting today would be to discuss the many doctor appointments I have had lately. We get to my parents house, and we sit around catching up and talking about other things. I think everybody is starting to suspect, that I will have troubling news. I am really wrestling with my feelings right now. Deb has been wonderful in helping me deal with my feelings, but Iím now face-to-face with my parents and sister, and Iím really having a hard time getting to the point. We are all sitting or standing in the kitchen and I finally say, I think itís time we tell you what we came here to tell you. You could hear a pin drop, and everybodyís eyes were focused on me.
I said there is no easy way to break this to you; I have been diagnosed with Lou Gehrigís disease. Both my sister and my mother left the room, gasping for air. My dad just sat there as if what I told him could never be true. Larry had a look of complete disbelief on his face, and Deb and I looked at each other. We both knew that we needed to talk to everyone and help settle them down. This was not an easy task. As Deb and I started to talk openly about the diagnosis, we both became very emotional, and everybody else became more emotional. I explained to them, that we didnít know how much time I had. [We have been told by the ALS society that we should not tell our parents, how much time I had left]. I would do that privately with my sister and Larry, and I would find a way to tell my parents, after a while.
There was a lot of crying, hugging, and staring off into space. This was truly the toughest day of my life. I hated hurting my parents, Paula and Larry. When it was time to go, we staggered to the car like zombies. Paula and Larry left before we did. Very emotional as they drove off. Then we had to say goodbye to my parents. I just didnít want to say goodbye. We held hands, and kissed goodbye. First time since I was a kid, I could smell my parents with their very distinct smell, and a lot of childhood memories came to mind.
As we drove off, it was like somebody had put a ball of cotton in front of my eyes. The whole scene was surreal. As we got out of sight, Deb and my emotions came to the surface, and we just stopped the car to gain our composure.
It would be a couple weeks before I had the chance to tell my brother Richard. We just had a hard time getting together. Deb and I were in Portland, and we arranged to meet my brother for breakfast. We hadnít seen each other in quite a while, so we did a lot of catching up before I had to give him the news. The whole time sitting across the table from him, memories of our childhood were racing into my mind. These were very vivid memories, and I think thatís unique between twin brothers.
I said brother, I have some bad news for you, and I told him about my diagnosis. He was stunned, and asked a ton of questions. He also said, youíre going to beat this thing, and you will be around a long time. It wasnít as emotional as it was telling my parents, but then my brother and I have a different relationship, and we have always discussed things openly. I know heís on my side, and I know heís struggling with this information.
We all are guilty of never telling our family how much we love them; we just tell them that we do love them. As I told my family how much I loved them, we all broke down. I know dealing with this information will be tough for them.
Telling Debís Family: Telling Debís family was much different for us. Deb had to call her brother Jim and his wife Shawn, Carl and Daneen, and her sister Katherine. This was not easy for Deb, and after each call, I could see how emotional Deb was. We had to make a trip to Eugene. The day Deb would tell them, they were having a small family reunion, with a couple family members visiting from Oklahoma, and both of her brotherís family. I was outside having a beer with her brothers, Jim and Carl. Deb called everyoneís attention to her while they sat in the front room of the house. Immediately, Debís dad, Jim, came out side, and told me that Deb had told them the diagnosis. You could see he was very emotional, and he just came over and hugged me. I feel so close to Debís family, and telling them about my diagnosis, was as tough as telling my own family. The rest of the day, we talked openly about the diagnosis, and I think that put everybody at ease. I think everybody knew how the future was going to be for their daughter. They also know that Deb will commit herself to my care. Thatís just the way Deb is. Deb is my angel. Leaving Eugene was emotional for Deb and I, as we know, the diagnosis is troubling for everybody.
Telling Customers and Friends: I called many friends, and I decided to write a newsletter type of statement to be sent out to all of our customers/friends, who have been loyal supporters of Deschutes Optical for so many years. This was very tough an emotional for me. I had to make the information to the point and try to soften the language.
I can only tell you, how heartfelt the replies were. Our customers have been like family to me over the last 23 years.
Telling my longtime friends, many of them I have known for over 50 years, took a lot of preparation. I prepared a list of friends to call. The names are too numerous to mention, but I remember my frustration, in that I could not reach many the first call. I didnít feel I should leave a message, and I would wait for them to call me back. Their return calls came indiscriminately the next few days. I didnít have much time to prepare, so I just shot from the hip, and told them flat she is wholly mall a out what I was facing. I canít tell you how fortunate I have been, to have friends that stay close, share memories, support and encourage you your whole life. All of the return calls were very emotional, and it left me numb.
In part 4, I will try to explain what the last couple years have been like. ALS is known as the worst of the worst, however, you get to say everything you want to say to anyone. If I had been diagnosed with a terrible cancer or other terminal disease, I would not have the time to put my life in order, tell all of my friends, family, customers, and the business associates how much I have appreciated them over the years.
Part 4, never became. John's ability to use voice recognition software became an issue and his medical needs were increasing. I never heard him complain when he was no longer able to use his laptop.