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Archive for the ‘A New Life with ALS’ Category

The time to change the guard is upon us, and we’d like to reflect on what an honor and privilege it’s been to serve as co-chairpersons of MDA’s ALS Division over the past year and a half.

From the beginning of our service in late 2002, it’s been our mission to bring greater awareness of ALS, raise funds for MDA’s research program, and provide help and hope to those affected by this terrible disease.

Highlights

We taped three videos to be distributed to families newly facing ALS and introduce them to the benefits of participating in a MDA support group. We taped a television public service announcement that’s been aired nationally for a year.

Early in 2003, we spoke at a national conference of MDA’s Health Care Service Coordinators. We were able to convey what a powerful impact they can have on the fragile families they deal with.

In the summer, we gave the patient and advocate side at a conference of dedicated doctors, clinicians and biostatisticians who are working hard to find treatments or cures for ALS.

We were honored to be on the cover of Parade magazine’s Labor Day weekend issue and to help draw viewers to the Jerry Lewis MDA Telethon. To this day we receive positive correspondence from the impact of that article.

On the Telethon, we shared our ALS story with the millions of people watching.

Our monthly articles in this newsletter have been intended to give readers some thought-provoking ideas about dealing with ALS and assure them they aren’t alone.

Continuing to Serve

We’ll continue, whenever and wherever possible, to spread the word about ALS, raise funds for research, and provide help and hope. These objectives are the basis for our “new life with ALS.”

We’d like to thank everyone who’s helping in the fight against ALS, whether personally, publicly, financially or through research. This disease can deteriorate our bodies but it can’t take our spirits.

Our opportunity to serve the Muscular Dystrophy Association gave us purpose when this insidious disease had stripped it away. We hope we’ve made a difference and, when the cure is found, we’ll know we had a part in it.

We’d especially like to thank Jerry Lewis, MDA National Chairman, humanitarian and friend. All year round he selflessly gives of himself to his “kids,” including a 38-year-old man who will forever be changed by Jerry’s unconditional love and passion for life.

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It’s almost a relief to have the holidays over and the New Year in full swing.

We had a wonderful time with Christopher on his winter break and had mixed feelings when he went back to school. It certainly frees up our time during the day — 5-year-olds tend to monopolize that. However, there was a real joy in the relaxing days spent with our little family with no pressure to be anywhere or do anything.

With Christopher back in school, our attention is focused on our goals in life. If you don’t have any, make setting them your first one. We’ll continue our mission to raise awareness of ALS, gather funds for research, and provide help and hope to anybody affected by this dreadful disease.

Healing

We recently participated in a personal achievement seminar focusing on the core issues of life, such as: What causes upset for you and why? Then, the process of healing these core issues was addressed, so participants could learn to stop them from sabotaging their dreams.

We attended a similar seminar by the same facilitator about nine years ago, and it changed our lives. Perhaps it’s one of the reasons why we look at ALS as a blessing instead of a curse.

Everyone handles the same circumstance, ALS for instance, in different ways. ALS has a way of triggering our worst fears — such as death, financial insecurity, loss of companionship. If we can find a way not to fear these things and come to a place of peace instead, then perhaps ALS can seem less devastating.

ALS has happened to us whether we fear it or not. That’s the circumstance. We have to make peace with where we are in our lives right now.

Freedom

Imagine the possibility that this life situation (ALS) might be the perfect opportunity to start or do something you’ve always wanted to — taking a trip, starting a new hobby, writing a book, mending or ending a relationship, becoming the person you’ve always wanted to be.

This could be a time in your life in which you have complete freedom to go, do and see (internally or externally) whatever has been put off by other circumstances.

We realize that people with ALS are in different stages of this mysterious disease. But the physical limitations of our bodies don’t have to invalidate the process of dreaming, either for those with the disease or their caregivers.

We’d like to leave you with a thought expressed at the seminar: Peace is love at rest and joy is love at play.

We hope that 2004 brings you much peace and joy!

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With the holiday season upon us, we have many choices to make regarding our feelings about it.

The first Christmas after Steven’s ALS diagnosis we wanted to get away from everything that was familiar and take a wonderful trip to Hawaii.

It turned out to be the worst Christmas I ever had.

Even though we were vacationing in one of the most beautiful places I could imagine visiting, I couldn’t see past the diagnosis, and the only reason we were there was because of ALS.

Staying Home

Last year we decided we wouldn’t leave Colorado where we had always spent Christmas. Seeing the beautiful white-capped Rocky Mountains and waking up in our home is where I wanted to be. We knew there would be challenges and we accepted that things would likely be different.

As we were putting up the Christmas tree, Steven became exhausted and needed to take a rest, so he went to the bedroom and napped. This frustrated me, but instead of being able to articulate my feelings, I just closed up and shut down. I thought Steven should have rested on the couch so he’d still be part of the moment instead of going into another room.

Christopher and I finished putting up the tree alone. All I could think was, “This is the way it’s going to be and I’d better get used to it.” As I thought more about it, I realized that Steven is still with us and we needed to talk about our feelings.

Later that evening, after Christopher was asleep, we discussed what had happened during the day and I was able to tell him my feelings. Steven shared how frustrated he was that he couldn’t help me and be part of the way we’ve always celebrated Christmas together.

Taking a New Approach

More changes are happening every day. I think about how we might have to change our holiday traditions again this year. Instead of fighting these changes or getting upset, I’ll try to be more communicative with Steven.

I’ve thought about spending two or three days decorating instead of forcing it into one day. And maybe we don’t have to do as much decorating as we’ve done in the past. In living with ALS, I keep finding out that life is about expectations, and if I plan to take more time on a project, I won’t get so frustrated.

Reasons to Celebrate

We have many things to be thankful for this year. Steven is still alive and able to get around. God has blessed us with a wonderful support system and a son who keeps us thinking about tomorrow.

My belief in God is what sustains me on this earth and why I remain so positive. Life still has meaning and purpose.

Support Group

One last thought to leave you with: Steven and I think one reason that holidays are difficult is because they’re a poignant marker of progression. We’re trying not to make any holiday such a big deal anymore (kind of hard to do with a 5-year-old) and instead to celebrate every day. I try to cherish the memories of the past but also live in the present.

One thing ALS has taught me is not to plan too far into the future. I used to be such a planner that I missed out on too many todays.

I know others of you may have similar feelings about the holidays. My wish is that, when you read about my experience, you’ll know you aren’t alone. We’re never alone, thanks to MDA!

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Denial is a powerful weapon in fighting a devastating disease or situation, particularly when it allows one to enjoy the gift of life. However, it can also be unhealthy both mentally and physically.

We define psychological denial as a person’s lack of acknowledgement of a particular predicament. The result is that others who might like to understand and support the person in his or her struggle aren’t able to do so.

A friend of ours who’s dealing with several chronic medical conditions recently asked us how we stay so positive in the face of ALS. The ensuing conversation went in many directions for all parties involved and also fostered further self-discovery.

Several issues seem to get in the way of quality of life when denial determines your attitude. Three primary issues are: chronic pain, a feeling that you’re not meeting family responsibilities, and a lack of understanding from family, friends and others in your support network.

Chronic Pain

Chronic pain, resulting from medical or other conditions, can be overmedicated or undermedicated. Whatever the situation, it can lead to a feeling of constant desperation and change in personality. It’s difficult to be yourself when you hurt or have too many chemicals in your body.

You obviously should discuss alternative forms of pain management with your doctor, and ask your doctor to explain all of the treatment options.

Recently, we had a conversation with a newly diagnosed ALS patient and he was told the usual: two to five years survival, don’t do anything more than three months in advance and get your affairs in order. Oh yeah, the only thing that might help is Rilutek.

Not one thing was mentioned about symptomatic relief of cramps, spasms, twitches and joint pain, or anti-depressants for his reaction to the most devastating news most people will receive in their lives.

We don’t have control over what this disease does to our bodies. We do have control over how it affects us.

Don’t deny your pain — physical or emotional. Find professionals who can give you the help you need.

Family Responsibilities

Family responsibilities are very subjective. The fact that we might want to do more than we physically can is a message that must be made known to those we love.

Children, for example, may just think we aren’t interested in them, when in fact, we’re simply unable to interact as much as we’d like. This may happen especially if they don’t know the full ramifications of the
ALS situation.

When Steven began showing symptoms of ALS, our son had sympathetic aches and pains. He’d say, “My legs are too tired to walk, too,” until he understood that Daddy has a disease that makes his muscles not work right, but that Christopher doesn’t have this problem. He surprised us with his understanding and compassion and continues to do so daily.

If Christopher asks whether ALS will kill Steven, we can honestly say, “We don’t know.” None of us are guaranteed tomorrow and the way the end comes isn’t foretold to us. There also may be a cure or treatment right around the corner that none of us are aware of.

In marriage, we have an opportunity to reach an emotional level not tapped before. Of course, the physical challenges of taking care of a spouse with ALS shouldn’t be minimized. However, if we try to reach out and emotionally enhance the relationship, we may be able to offset some of the physical difficulties.

Again, we can only change things in our control. And the first step may be for husband and wife to stop denying the nature of the problem, so they can honestly reach solutions together.

Understanding & Support

Understanding and support from our circle of family and friends is in large part something we can control. If we live in denial, it’s difficult to let others know what we’re dealing with and therefore impossible for them to understand our situations.

We have the opportunity to let others into our lives. Some of the details of that life may be too much for some and relationships may change for the worse. On the other hand, if we let people know our challenges and open ourselves up emotionally, new relationships will form with old friends and new acquaintances.

We feel it’s imperative to have a sense of purpose. It can be simple or complex as long as it’s there every morning to bring forth another day.

When Steven stopped working and the doctors suggested we get our affairs in order, we did so. After that, a hole was left as to what we should do for the rest of our lives, however long that may be. We found our purpose mostly with our son and each other, but also with our volunteer work with the MDA.

Simply, the process of finding a new purpose is a life mission itself and worth the challenge of waking up every day.

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The experience of attending the national Jerry Lewis MDA Telethon in Hollywood is surreal. If you can imagine a television studio filled with pure love until the sides busted out, it would be close.

One might think that, after 38 years of Labor Day Telethons, the process might become mundane or almost calculated. On the contrary, this was our second year to go to the national show in person, and it was even more intense than the first.

The talent is so varied that it truly makes the Telethon one of the greatest shows on earth. The performers are generous with their time, volunteering just to help break last year’s record of donations.

And the amazing Jerry Lewis, Telethon star, somehow gets more passionate with each passing year. What you don’t see on TV is his personal reaction to each of the families who appear onstage to share their stories.

He knows it isn’t easy for them to open up during a difficult time in their lives in order to raise disease awareness and funds for research. He’s so touched by the families’ courage that at times we saw him bury his head in his hands in emotion — something not shared on camera. This passion comes from a man who’s defied the odds with his own health for decades and this year was struggling for every breath.

Our point in relaying this experience is to remind you that we don’t always realize who’s fighting for us. In MDA, each of us has an extended family that truly empathizes with what we’re going through.

We believe that all the neuromuscular diseases in MDA’s program must be somehow connected, and we find Telethon a wonderful time to think of others and not just ourselves. It’s also the time of year to remember that there are so many others facing adversity and to learn about ways they stay positive. We’re constantly learning and growing through every person we meet.

How special we should all feel that people care so much about us!

Many of the celebrities we met this year touched us emotionally, and we’d like to tell you about just a few. The beautiful and talented Jann Carl from “Entertainment Tonight” — the Telethon’s wonderful co-host — stole our hearts last year. Before each interview, she’d come over and talk to the family to ease their nervousness about being on TV in front of millions of viewers.

Jann is one of the classiest women we’ve ever met. After staying up for 21-plus hours, she mingled with all the families and took pictures for almost an hour after the show was over.

Another person we were thrilled to meet was Charo. What an amazing amount of energy she has. Her devotion to MDA is obvious from the nearly 25 years she’s performed on the Telethon and assisted the MDA community. When we met her she was very open and easy to talk to although a little difficult to understand!

Someone who especially impressed us this year is 15-year-old recording artist Billy Gilman, MDA’s national youth chairperson, and his managers.

Billy gives us faith in the young people who are our future. The children, grandchildren, nieces, nephews or friends’ children in our lives present us with an opportunity to teach some pertinent lessons, such as enjoying every day, making time to spend with the people they love, meeting new people and allowing them in their lives, along with all the other things we learn about life when we discover how easy it is to lose.

That mission alone can give us purpose that can keep us motivated and help us stay positive when we most desperately need to be. A focus on educating the younger generations keeps us from wallowing in our physical decline. Thanks, Billy, for taking a leadership role along with Mattie Stepanek in delivering these very important messages to our humanity’s future.

The Jerry Lewis MDA Telethon is about education, entertainment, hope and love. It gives us all these things that are essential for our ability to handle the challenge of ALS. And the Telethon lets us know that good people are working diligently to help us — not just on Labor Day but throughout the year.

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With the Jerry Lewis MDA Telethon successfully completed for 2003, we thought it would be a good time to review an event we attended this summer. It was a fantastic example of how the funds MDA raises during the Telethon and throughout the year are used to benefit people with ALS.

In June we attended MDA’s conference, ALS Clinical Trials: The Challenge of the Next Century, in Tarrytown, N.Y. We were thrilled to have this opportunity to speak to more than 150 experts in clinical studies and other avenues of ALS research. (See “Drugs, Stem Cells, Trial Designs,” July 2003, for a complete report on the conference.)

When we told our MDA ALS support group that we were going to speak to researchers, one member, then in the late stages of ALS, typed out a message for us to share. This spirited and positive woman wrote:

“Speed ‘em up.”

That was the theme of the conference and the message we shared — the urgency of getting research findings into clinical trials and treatments as quickly as possible — because friends and loved ones are losing the battle.

Intense Conversation

At the first evening’s dinner, we sat with Stanley Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, and his wife, Joan; Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore; Rothstein’s research fellow, several other doctors and a bio-statistician. We were thrilled to hear the intense conversation buzzing around the table as these experts discussed theories and results.

These scientists’ dedication to ALS research was unquestionable, and the evening provided us with a renewed outlook on their ongoing efforts. We were both deeply moved, and Jennifer tearfully thanked them all for their support.

We attended the next morning’s session, chaired by conference co-director Hiroshi Mitsumoto, who had invited us to New York. He’s co-director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York.

We were very impressed with the detail in each presentation as well as the wide range of subjects covered. It was evident to us that the overall goal of the event would be achieved, i.e., to advance the methods and procedures of ALS clinical studies and to minimize or eliminate the need to reinvent the wheel.

The afternoon session on lessons from studies in other diseases and clinical trials was testimony to the progress MDA scientists want to make in ALS. From our conversations and observations, we came away believing that the conference had a profound impact on the participants. Several scientists commented on the need for collaborative efforts among institutions and suggested our time at the podium could encourage this theme. They felt that adding a human element to the scientific process would be of great value.

Personal Message

The evening dinner celebrated Lou Gehrig’s 100th birthday (June 19). After an overview of Gehrig’s life and presentations by several researchers, we were introduced by Victor Wright, a member of MDA’s Board of Directors.

We told our story and pleaded for all parties to work together and share their findings, failures and successes. We told them about the message from our friend in Denver, and emphasized that we have friends dying from this disease.

We were honored to be invited to the conference and to share our thoughts of appreciation, encouragement and urgency with this influential group. We commend Dr. Mitsumoto and his co-chairman, Serge Przedborski, as well as the other organizers, presenters and participants for the time and energy they expended on this event.

On June 17, two days after we returned home from New York, our friend who had urged researchers to speed up lost her battle with ALS. Her loss was another sad reminder of how important it is to get the word out about ALS and how many people it truly affects.

Thank you to MDA for sponsoring the conference and for trusting us to add meaningful insight. It’s events like this that continue to provide us with hope that there will be a treatment or cure for ALS — maybe in time for Steven, and certainly for others who’ll be affected by this revolting disease in the near future.

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More than 13 years ago, when I said, “I do,” did I really know what I was in for? Or for that matter, do any of us? In my concept of marriage, it doesn’t matter.

The biggest unexpected event in our marriage was Steven’s diagnosis with ALS in 2001. Many things have changed for us since then, but Steven is still the same person; actually, he is an even deeper, stronger person now than he was before he had ALS.

Losses and Gains

The Bishops

Initially, my greatest sense of loss was for our son, Christopher, then not quite 3 years old. I felt incredibly sad for him that he would have such a hard life without his father, and would miss so much of his father’s guidance. I’m still conflicted about whether to spend time with and take care of Steven or of Christopher. Steven says I should pick Christopher over him, but it isn’t always that easy.

Given our situation, I think Christopher will grow up to be a more dynamic, loving, caring, well-rounded person.

Now I don’t fight ALS, but I’ve learned to accept and embrace it. ALS is only a part of who we are, and it has been a gift of perspective for me.

Learning and Teaching

When Steven was working, we were fortunate enough to have one of our dream cars, a Mercedes-Benz. After our diagnosis and a financial reevaluation, we decided to sell the car.

A man looking to buy the car asked why we were selling it. We told him that Steven had ALS and gave a brief explanation.

When Steven left the room the man leaned over and whispered, “Is it contagious?” My answer was, “Of course not!” But at that point I knew I had my work cut out for me.

If this seemingly well-to-do and intelligent man had no idea whether ALS was contagious, then what did everyone else think about it? This awareness of the public’s lack of knowledge was one of the main driving forces for my MDA involvement.

Blessings and Time

I feel extremely blessed to live the life I’m living. The quality of our time together is well worth whatever we may lose in number of years.

Recently two of my friends from high school have gone through ugly divorces. I told them I’d rather be going through life with ALS than the terrible situations they’re dealing with.

I’m living with my soulmate, and, because of my faith, I know that our short time on this planet is only the tip of what is to come later. Steven and I have healthier communication. Our mental attitude toward each other is one of total respect for what the other feels and experiences.

We’re both adapting to physical and mental challenges every day. I find that when I try to replace Steven’s physical strength, it only leads to frustration, so I find people to help or I hire out as much as possible.

Mentally I’m good. I have no reason to be depressed, because I get to spend every day with the two most wonderful people I could imagine spending time with — Steven and Christopher.

My biggest challenge is not planning too far into the future. We only have today, and why not make it the best we can? I tell my friends and family that there will be a day when I’m sad, but not today, not while Steven is still around.

To my wonderful husband: You are my inspiration and my breath. I love to see you with our son and how motivating you are to others with or without ALS. This is truly your life’s calling. I’m forever indebted to you for making me a better person.

It will be a privilege and an honor to take care of you until the bitter end or until a treatment or cure is found. I feel this is what God put me on this earth to do. I’ll bet many other spouses feel the same!

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