PROFILES IN COURAGE
» Norma & Wayne
A local neurologist first diagnosed me in November 1999 who told me that I had ALS. He was very cold and unfeeling at that appointment. He told me to go home and get my affairs in order, that I had about 2 years to live and that in 6-9 months I was going to be completely disabled. I was stunned!
My primary care physician then referred me to Dr. Mitsumoto for a second opinion in December 1999.
When I came to the ALS Center at Columbia I found a very different attitude. I was greeted by smiling faces and found a sense of hope. The team approach to treating the whole person has helped me accept this illness and given me tools to handle its effects.
Meeting with the physical and occupational therapists as well as the counselor have helped with my daily issues and my emotional stress.
The fact that the center offers clinical trials as well, gives me the hope that I need as I continue to live with ALS. The Center helps me keep going and living life to it's fullest.
In my experience, over the nine years I have battled ALS, the sole measure of a hospital is the culmination of knowledge, love and caring the doctors and nurses bring to their jobs. That is why I put my life in the hands of people at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia-Presbyterian Medical Center.
I was first diagnosed in November 1998 by Dr. Rowland who referred me immediately to the center, where I have been a patient ever since. The quarterly visits offer me and my family continual help in so many areas. Besides the medical and clinical care, regular conferences with the PT and OT staff have been invaluable in terms of helpful advice. Most valuable as well are referrals to other resources, to say nothing of the comfort and support and wise coaching the professional staff has always offered.
My name is Ray Kelly from Washington, Maine, and I was diagnosed with ALS on September 29, 2000. Because Maine has few neurologists with expertise when it comes to ALS, my neurologist wanted us to check out 3 ALS Centers: New England ALS Center, Boston, and Columbia. After a lot of research and some personal recommendations, the ALS Center at Columbia became our first choice.
Our experiences at The Eleanor and Lou Gehrig MDA/ALS Center have all been positive. Thanks to the speech pathologist, I learned that a palatal lift might help make my voice more understandable. Indeed, it has. Thanks to the physical therapist, I have obtained a very comfortable, lightweight neck brace. Thanks to Dr. Mitsumoto, I know about the importance of maintaining my weight and the future benefits of a peg tube and has answered my questions regarding current research trials and medications.
An example of the dedication and compassion of the ALS staff happened last winter when we drove from Maine to NYC only to hear that an imminent huge snowstorm was closing everything down in the city. The ALS Center and the hospital had to close EXCEPT for us. Incredibly, all of the medical specialists including Dr. Mitsumoto were there for us.
ALS takes its toll on patients' emotions, but our visits to Columbia have always given my wife and me an uplifting experience.
In January of 1997 Wayne went to see a neurologist at Columbia, having been referred by his primary physician. In a relatively short time, it became clear that Wayne had ALS. He was referred to Dr. Lewis Rowland and the ALS Center sometime in the early spring of 1997.
During the next few months we attended the ALS support group. From the lectures at the support groups – and also from individual conversations with professionals at the Center – we received much valuable information about ALS and living with it. Indeed, looking back, it is difficult to see how we would have survived without this help as the Center's resources have been invaluable.
— Norma & Wayne
The trouble with many leaders is that they lack one or more of the necessary characteristics of leadership. One person is an excellent administrator but lacks people skills. Another is a charmer but a cad. Still another is compassionate but completely disorganized. When a man or a woman comes along who has all the required characteristics of leadership, then we have a George Washington, an Abraham Lincoln, a Martin Luther King, a Mother Theresa.
In this profile I would like to celebrate two leaders who have it all: Dr. Mitsumoto and Mrs. Maura Del Bene. Not only is Dr. Mitsumoto a brilliant doctor and researcher, in my case he recognized immediately that my emotional and physical survival depended in large measure on my continuing to paint my watercolors. So when I told them that I was losing my ability to move my hands and thus to paint, he immediately said, “ Well then, you can paint with your mouth.” He sent me to the Helen Hayes Rehab center where sure enough I learned to paint with my mouth. At a recent reception for Michael Beier, a great man, a friend, and unfortunately an ALS patient, Dr. Mitsumoto showed his compassion for me by giving me no less than four big hugs. Talk about morale boosters!
While we are on the subject of morale boosters, this is Maura Del Bene’s specialty – though of course she is also a brilliant researcher, nurse practitioner and administrator – and an art promoter to boot. It was she, along with Sandy Green, who arranged to have an art show for artists with ALS whose work also is part of the Permanent collection in the MDA Gallery of Art Headquarters in Tucson AZ. My paintings, several of them done with my mouth, were displayed at the art show held in N.Y.C. Three hundred people attended the show. Again, talk about morale boosters! Perhaps what I appreciate most about Maura is that on her day off she met with my wife over coffee and discussed with her matters pertaining to the life of a caregiver of a husband who was about to undergo a tracheotomy.
This is why I – and all my friends and relatives – love these two great leaders and why they occupy a high place in my personal pantheon. I am sure that some day they will occupy a high place in heaven for agreeing to be the compassionate hands of God on earth. God bless them both.