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Online supplement to the Winter 2008 ALS Alert EMBRACING THE NEW NORMAL: 1. First, how are you feeling? I feel well; no complaints—other than a touch of ALS. Without going into boring details, I have learned how to manage the problems of immobility, muscle weakness and compromised lung capacity. I am vigilant about
monitoring myself, especially since there is little medical information about how to deal with long-term extreme disability. So we manage with minimal medical intervention. I see my pulmonologist once a year and in between email him or my GP with any questions. The Visiting Nurse Association has been extraordinarily helpful. For example, they found a nutritionist to develop a recipe for my food. My VNS nurse practitioner visits every 6 to10 weeks to monitor my blood pressure, write prescriptions and arrange semiannual blood work. I maintain flexibility and range of motion with physical therapy three times a week. Otherwise, I try to ignore my condition as much as possible to minimize its intrusion on our lives. Our house does not look like a hospital. We keep equipment to a minimum; most of it is on my bedside table. I get up and nicely dressed every day. I don't spend the day in bed. I go out to movies, plays, the opera and ballet, museums and occasionally shopping (happily I can do most of that on line). I have many friends who visit. We have guests often for dinner. I keep my husband company; I see my children as often as possible. I correspond by email with family and friends every day. 2. Some biog. details: Where you were born and raised, family life, values, major influences. Interests/hobbies? Were you athletic? I’m 63 and was 53 when I was diagnosed. I was born in Washington, D.C. during the War. Both my parents were working at the Pentagon. After the War, we moved to Winnetka, Ill. My father was from Chicago, and he returned to the bank in Chicago where he had been working. I have one younger sister, two years my junior. She is a professor at St. John's College in Annapolis. I went to public school in Winnetka. Education, art and music were very important to my parents and shaped my values and interests. Both my parents were active in many civic and cultural organizations. From their example, I've always felt it was important to give back to the community. My mother also had a career in the 1930s when working on Wall Street was unusual for a woman. My mother was a strong influence on my choosing a career for myself. I went to Wellesley College and then immediately on to Harvard Law School. After law school, I moved to New York City and practiced law continuously for over 30 years in a variety of settings and built a substantial practice for individual clients. I also served on many not-for-profit boards, including four of the schools my children attended, Planned Parenthood of NYC and WNYC, the City’s public radio station. I raised our three children, managed our homes and arranged our social life. I loved travel, plays and ballet. I exercised but wasn't that athletic. I had very little free time. I came from the generation of women who felt they should manage everything.
3. Did you and Chris meet at Harvard? How long have you been married? And how has your relationship evolved since you were diagnosed with ALS? Christopher and I met in 1966 on our first day of Harvard Law School. There were 28 women in our class of 550, so women were noticeable. It was definitely before the time when women were common in the profession. Christopher and I were just friends our first year and only began dating seriously our second year. We married in 1971 after we had both moved to NYC, where we were working for firms. So we have been married 37 years. I'll talk about Christopher and ALS when I talk about the family in the next question. 4. How old are your three children, and do they live nearby? Isn't one of your children writing a book about dealing with ALS? Feel free to share how your illness has affected the family, starting with Chris. ALS both brings you closer together and tears you apart. It shatters dreams and because it progresses you just get used to one stage when you are already declining into the next. Ii think it was hardest on Christopher. All the things we had expected to do together we could no longer do. The strong independent person he relied on to do everything was suddenly dependent and weak. He hates change, and everything was always changing. We had to move out of the house he had grown up in and where we had lived for 25 years. Gradually his home was invaded by the people needed to take care of me. He began to study ALS, and, without a science background, he has become very knowledgeable. And, as you know, he was instrumental in founding the Packard Center and was its first Board chair. But the time while the disease progressed was hard. My kids, now 33, 31 and 27, were amazing from the start. They were funny, helpful and giving. They wanted to absorb as much of me as they could. In turn, I wanted to be as open as possible so they would know that they meant everything to me. We spent a lot of time together and laughed a lot. They became my hands, doing all of the big and little things at home that I could no longer do. But each of them struggled to come to grips with this devastating illness. Elizabeth, our oldest, began her MFA in 2001, and her book-length thesis was about ALS and our family. She still hasn't decided whether to publish it. It's a little too personal still. Margaret, our middle child, who had always been a runner, threw herself into marathons. Partly it was therapy because running made sense when nothing else did, and it was also her way of dealing with ALS. Between 1999 and 2003 she organized five marathon teams whose members raised money—over $600,000 for ALS research. Margaret had always been a good runner, but over time she became an outstanding runner. She placed 31st in the U.S. Olympics women's marathon trials, having trained while doing her first year at Columbia Business School. Our son, Chris was in high school when this all began, but he became the rock everyone leaned on. The children were always close but became even closer. They took care of each other. Our oldest Elizabeth, the writer, is married and lives in Brooklyn. She is a senior editor at Allure magazine. Margaret, our middle child, is also married and lives in Boston while her husband finishes grad school. She is a special assistant to the chief operating officer of the Boston public schools. Our son Chris is in the middle of a joint law and master’s degree in international relations. For now he is at SAIS in Washington, but later this year he will be moving back to New York to finish at Columbia Law School. We see all of them often. I was officially diagnosed in May 1998, but I had been having symptoms of muscle weakness for almost a year before that. It began in my legs and feet, and I had foot-drop, which meant occasionally and unpredictably I would trip myself and fall on my face. The falls occurred with increasing frequency, and my GP sent me to a neurologist at Columbia Presbyterian, who suggested we see a specialist to confirm the diagnosis. Dr. Rowland, head of Columbia Presbyterian's neurology department, whose specialty was ALS, confirmed the diagnosis six weeks later. Two weeks after that, I saw Jeff Rothstein. I was only vaguely aware of ALS when I was diagnosed, but I quickly learned all about it. It felt very surreal because at the time, other than an occasional fall, I felt completely normal. It seemed inconceivable that I would soon be unable to move, speak or breathe. 6. What brought you to the Packard Center? Describe your experience at Hopkins and how you went on with your life afterwards. After I was diagnosed in May 1998, Christopher did a lot of research about ALS online. The ALS community is small, and it wasn't hard to find out that Jeff Rothstein was one of the leaders in the field. We decided to seek another opinion from Jeff. When we called for an appointment, we were given one right away; no lengthy wait. When we arrived at Hopkins everyone was so helpful. Jeff saw us on time. He had a plan of treatment. Jeff was also about to start his small phase 2 trial for an Eli Lilly drug. I agreed to be part of the trial. For over a year, until the trial was terminated, I made at least monthly trips to Baltimore. The care and concern from Jeff, Lora and everyone else at the clinic buoyed my spirits every time I went. I have fought hard from the beginning to preserve my life as much as possible. Unfortunately, ALS is all about loss—loss of movement and all the limitations that result from it. 7. You joined the Packard Center Board of Directors in 2002. What compelled you to join? As you know, Christopher, on behalf of the Kornfeld Foundation was instrumental in establishing the Packard Center, along with Bob Packard, who was diagnosed shortly after I was (we were introduced by mutual friends). After the initial shock of my diagnosis wore off, we began to think about what would be most helpful. In December 1998, Hopkins hosted a dinner for participants in the Eli Lilly trial. The desperation and fragility of the participants was in marked contrast to Jeff's vigorous and exciting research update. It was then clear to me that only supporting efforts to find treatments and a cure for ALS would ever give patients the hope so necessary to help them withstand this disease. I worked with Christopher at every step in designing the Packard center structure. I joined the board in the hope that, as someone with ALS, I could give voice to the concerns of ALS patients and could also be an advocate for the importance of the work of the Center. 8. What do you foresee for the Center in this era? The Packard center has established itself as an innovative model in collaborative research, which has established it as the leader in ALS research. But it could do much more. I aspire to helping it find more substantial donors so that that research can be expanded on while a new drive is made to find and test new therapies. With the amazing tools that have been developed in the past 10 years, new treatments can be developed and tested much more quickly if only the center had substantial funds available. 9. Do you still have a role coordinating trusts and estates for Bryan Cave? Are you still able to serve/advise on any boards? Without being able to move or speak, my professional life became impossible, and I retired in 2002. I have continued on the board of WNYC, New York's public radio station, where I've served on the board since 1993. I communicate by email, conference calls and occasional in-person meetings, as I do with the Packard Center. 10. You've been on a ventilator for the past six years. Would you mind telling us how you reached that decision and how you've coped since? I went on a ventilator because I simply was not ready to die. I did so knowing that at some point I might be ready to choose to go off the ventilator. This is borrowed, even stolen time, and I vowed to make the most of it for my family and friends and for myself. I lead a full life, going out, seeing family and friends, reading and corresponding. I am grateful for every moment of this time. 11. I understand you have an extraordinary caregiver (in addition to Chris). I believe his name is Joel and that there are several others involved in your care. Please fill me in on how that's worked out. I do have an outstanding team and am fortunate that many have worked for me a long time, which is great considering burnout in this profession is high. We have found everyone but one person (she was referred by a friend—she was a home health aide with no experience with ALS) by advertising. Generally we do not hire people with much experience, although health care-related experience or interest is a prerequisite. Most are young. We train them. Experienced caregivers show new people the routine and gradually allow them to step in. I have also written out several memoranda about problems that come up and how to solve them. The routine is simple and repetitive so we have had good success training people. There are very few people who are experienced with the extreme disability of ALS so we have had no choice but to do it ourselves. Joel was our first advertising hire 5 years ago. He came to work for us shortly after he graduated from college. While working for us he went to nursing school and is now the nurse coordinator at the ALS clinic at Beth Israel Hospital. Now he only works one day a week helping me manage the staff and doing many special projects. He, like everyone else, has become my hands and voice allowing me to continue to live as I would like. As the 10th anniversary of my diagnosis approaches, we have all thought about this odyssey and why now it feels serene and stable. Two reasons occur to me: First my condition is stable. I can't deteriorate more, and I'm not in danger, thanks to the vent. Second, and most importantly, I've largely removed the issue of caregiving from my family and friends, which means I can concentrate on being wife, mother and friend to them. That sounds small, but in fact it's huge because it transforms relationships. 12. When did you get the eye-gaze computer and how has it improved the quality of your life? I got ERICA in December 2004. It would be an understatement to say it has transformed my life. My speech was the last of my functions to go, and I could speak, although with increasing difficulty, for over 1 1/2 years after, I went on the vent. By early 2004, speech had become a huge effort and it was increasingly difficult to understand me. That was a very difficult dark time. When you can't communicate, you become an invisible observer. I had tried other systems and had exhausted the resources here. I asked Christopher to ask Lora, and she suggested we look at Eye response's ERICA system. That was June, and even though we contacted them immediately, it still took 6 months to get the system in place. Nothing is ever fast or easy for ALS patients. I found the system easy to use from the beginning. However, their technical support is minimal. Fortunately, Joel is very good with computers, and I'm a quick learner. Together we have figured out a way around most problems. I'm what the company calls a power user. Not only do I use it to communicate but I correspond on email, read newspapers, magazines and books and shop. I organize our lives, plan menus, and am able to tell my helpers what I want or need. I'm pretty fast; it's not as good as talking, but it's the next best thing. To be able to communicate my thoughts allows me to be an active participant in life and gives me meaningful independence, no small thing for someone who is totally physically dependent. I know everyone around me is enormously grateful. When it arrived several of my friends cried and said they felt they had me back. 13. What advice would you offer other families dealing with ALS? I don't have advice because everyone deals with the challenges of ALS differently. But if an ALS patient wants to go on living, I am an example of how it can be done. Reported by Judy Minkove |
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