SpeciaLiving Magazine
Winter 2003 Cover Article
Steven and Jennifer were living the “good life.” Their greatest joy was son, Christopher, who was born after they had been trying for several years, Steven was a successful data sales manager, they had designed and built a luxurious home in the Denver suburbs, they drove a Mercedes and had a savings account.
Then Steven was diagnosed with amyotrophic lateral sclerosis (ALS). Their lives were changed forever.
SpeciaLiving: Steven, when were you diagnosed with ALS (also called Lou Gehrig’s disease) and how is it affecting you?
Steven: Actually I was diagnosed March 2001; I had symptoms since 1998. ALS is a degenerative disease of the neuromuscular system that most often strikes adults. Typically ALS progresses until the person loses fine motor control, the ability to walk, talk, and swallow often ending in complete paralysis. Life expectancy after an ALS disgnosis is typically two to five years. I still consider myself on borrowed time, i.e., two years.
The bottom line is that no one is guaranteed tomorrow anyway, that is why I feel so fortunate. I have been told I have a very slow progression. Most progressions stay steady. There should be no reason to believe I will not be around longer than five years. I’ve had gradual loss of muscle, particularly in my shoulders and thighs. I have constant fatigue in most muscles. I also have frequent pain in my lower back and spasms in my shoulder blade area. Medication helps spasms to an extent, but it depends on my activity. I have difficulty swallowing such foods as nuts and sometimes thin liquids.
I use a wheelchair or scooter when I am out for longer than a few minutes. I need to take breaks when brushing my teeth, shaving, and showering. My fine motor skills are deteriorating, I’m unable to open jars, small containers and writing is much more difficult. Buttons are becoming more difficult and I need help with small ones. Going upstairs is very hard. That’s why we had to move to a ranch style home, in addition to financial reasons, shortly after my diagnosis,
I feel very blessed and sometimes guilty that I am doing so well after being diagnosed so long ago (two years) but I still feel the pain as we see our friends deteriorate so quickly and after every funeral we attend.
Specialiving: What medications are you taking?
Steven: Mostly supplements but Baclofen for muscle spasms and stiffness. Tolmetin is for joint pain and Valium at night for muscles and to help me sleep. I take a small dose of Prozac to take edge off of a fatal diagnoses.
SpeciaLiving: Do you hold out hope for a cure for yourself? How far off do you think is a cure for ALS?
Steven: Absolutely! We never give up hope. I think a treatment that prolongs life or slows progression will come first.
That will happen before a cure is found. The root cause of ALS has yet to be determined, so we think an actual cure is a ways off. There are many types of ALS, i.e. limb or bulbar onset, fast or slow progression, pain or no pain, sporadic or familial. The doctors think there may be 14 different types. That is possibly why it is so difficult to narrow down a cause.
SpeciaLiving: Does supplemental disability insurance payments cover your medical expenses?
Steven: We had the foresight to purchase supplemental disability through our life insurance when Jennifer was pregnant and we wanted her to stay home and raise our son. My income needed to be protected. Even so, we are still living on only 50% of what I used to make. My medical insurance is through Medicare which I was required to apply for from my former employer. We also purchased a supplement to medicare. MDA funds research, drug trials and services. They have 30 ALS specific clinics for evaluation and ongoing therapy.
Neurologists, OTs, PTs, speech therapy are all available at these clinics once a patient is a client of MDA. (Frequency varies depending on the clinic. Please call MDA for further details).
SpeciaLiving: Your attitude is amazing. But does it just overwhelm you sometimes? How do you cope at those times?
Steven: I am not overwhelmed with the diagnoses, because it is not something that is within my control. I do get frustrated that I cannot participate in life as physically as I want to or used to. I am trying to learn how to ask and accept help with projects. However, I am a very ‘type A‘ personality which makes the situation difficult for me as well as those others that have good intentions. It is a learning process.
We find that a strong sense of humor is essential. Most of the time it is dark or gallows humor that pulls us through. On occasion, some of our close friends will let loose on a dark humor comment and then drop their jaw that they said it. Jennifer and I crack up and congratulate them on finally getting it, i.e. that it is alright to make light of the situation.
Jennifer: I am overwhelmed from time to time with the change in responsibilities both physically as well as emotionally. It is also difficult dealing with the possibility of Steven not being around to help raise Christopher and grow old with me as we planned. But we don’t know if or when that may happen. There will be a time I will be sad, but not while Steven is still here. We have had tremendous support from friends and family that most people have but either do not see or take advantage of. We do whatever we can to absorb the support and appreciate the relationships that are there. Our positive attitude attracts others with positive attitudes. That is exactly what we want to be surrounded in/with. We do not have time for life suckers. Those people that are unhappy with the world. Misery loves company and there is always someone who is better off but there is always someone who is worse off. It is all individual perspective. We believe positive attitude begets positive life. We think it is a big reason Steven is progressing so slowly.
SpeciaLiving: What have you done since Steven was diagnosed:
Jennifer: First of all, we have a different perspecitve of life. Our old dreams had to go. We needed to find something else that gave meaning to our lives. For Steven, the MDA gave him a purpose in life.
When a man who was buying ourcar asked if Steven’s disease was contagious, Steven and I decided to make raising awareness about ALS our missiion. We went to an MDA support group but there was only one couple there dealing with ALS. So, we started an ALS group that meets once a month and now there is up to 20 people at a meeting. We also appeared on the MDA Telethon and told our story.
SpeciaLiving: How does faith/religion play a part in your life?
Steven: Jennifer and I approach faith differently but passionately all the same.
Jennifer: I’m more ‘religious.’ I go to church for fellowship with other worshippers. Steven is more spiritual. He reads the Bible but his fellowship is with his friends. It is such an individual walk. I know I will always be with Steven. We have such a short time on this planet. It is only a tip of the iceberg of what is to come. I want to be around for Christopher. I gave up my career to “mother.”
After Steven’s diagnosis I did a lot of soul searching. I want Steven to be as active with Christopher as possible, even if I don’t agree. Before I might have said, ‘no way.’ Now I back off more. I believe Christopher is going to be a richer person because of this. He teaches me so many things. I want to give Christopher two things
1. Unconditional love
2. Self-esteem
Christopher teaches me so many things. We will get help for Steven’s physical needs when it becomes necessary. Our relationship won’t change. God put me on this earth to care for my husband. It’s challenging but we have a huge support system.
SpeciaLiving: You became friends with Jerry Lewis. Several years ago some people with MD were putting him down because he referred to “his kids.”
Steven: Last year at the national Telethon I told the entire studio and viewing audience that at age 37 I never thought I would be one of ‘Jerry’s kids,’ but I am. Again it is a matter of perspective. He has raised over a billion dollars for “his kids” through the Telethon. I am honored to be one and feel fortunate that ALS is one of the neuromuscular diseases that MDA has taken on. There is a reason that MDA covers 43 of these diseases. We feel that they a interlinked in some way and when the science reaches a certain level, the treatments and cures will be found like the domino effect. There are always people that are at issue with the way something is said or done. Everyone cannot be pleased. Jerry is helping a tremendous amount of people through his dedication and passion. He is truly a humanitarian.
I have been given a chance to appreciate life. Jennifer and I want to make every day count. We spend more quality time with family and friends. We are also trying to raise awareness about ALS. We write a column every month for the MDA/ALS newsletter. There is also a three-part video series about support groups in which we talk about many different aspects of support groups.
