Text of my presentation:
Good evening. My name is Aaron Cohen, and I was diagnosed with MS somewhere between 1976 and 1978. Aaron, you ask why don't you have a precise date for when you were diagnosed? Things were done differently back then, but we'll get to that in a moment.
First, I'd like to thank Kelly for inviting me to speak this evening, and I'd like to congratulate all of you for coming out to support her and all of us with MS. Now, we always need to start out a presentation with a joke. I took a presentations seminar back in my AT&T days, and the instructor demonstrated this by telling a joke that’s absolutely not appropriate for tonight. If you want to hear that joke, see me later.
A man rushes into the veterinarian’s office, holding and obviously dead parakeet. “Doctor doctor, please help my Petey. I found him lying perfectly still in the bottom of his cage. The doctor replied, “I’m sorry sir, but your parakeet is obviously dead and there is nothing I can do.” Well, that didn’t satisfy the grieving pet owner, and after much begging and pleading the doctor agreed to take another look. He laid the parakeet down on the examination table, and brought out a big black Labrador retriever from the kennel. The dog walked over to the examination table, sniffed at the bird and walked away. “The dog says the bird is dead.” Having still not convinced the pet owner the vet brought in a Siamese cat that walked back and forth across the table several times before jumping down and running back to the kennel. The doctor said, “the cat agrees that your parakeet is dead.” Finally convinced the man asks the vet what he owes. The vet says, “that will be $1000.” “A thousand dollars protests the man, that’s an awful lot to charge for telling me that my parakeet is dead.” “Well, says the vet, the office visit was $100, and the other $900 was for the CAT scan and the lab test.”
What do you know about MS? You probably know more than I knew when I was diagnosed. When you leave here this evening I hope you know a lot more, and have a better appreciation for why we must cure MS now. I could give you a lot of facts and figures about MS and a long list of symptoms that characterize the disease. I could tell you how the National Multiple Sclerosis Society was formed 70 years ago in March 1946 by Sylvia Lowery and 20 leading research physicians with the goal of understanding MS and finding a cure. I could tell you how it took 47 years before Betaseron – – the first definitive therapy for MS reached the streets. We could talk about the progress since 1993, or the fact that between 1946 and 1993 another 3 1/2 million people contracted the disease. But your eyes would soon roll back into your heads, your minds would wander, and even I would be bored. Instead, I will tell you a few stories.
In the early 60s, I must've been about nine years old, I had my first exposure to multiple sclerosis. My parent's good friend, Sy Zinderman had contracted MS. Uncle Sy was in his late 30s, father of three young children, World War II veteran with a promising career ahead of him. We were visiting, children playing in the living room and adults sitting around the table in the kitchen drinking coffee. I observed uncle Sy battle a full arm spasm while the other adults watched with growing concern. It seemed like his arm and just taken complete control. I was horrified. No one actually talked about MS. It just wasn't something that was spoken about. A few short years later Sy could no longer live at home, and was admitted to the VA hospital for care. In 1971 he died, completely bedridden and unable to take care of himself for several years. During those years my parents visited. My father was always agitated when he returned from those visits although he tried to hide it. When I was a teenager he said to me that being confined to your bed unable to take care of your basic bodily functions was no way to live. He was sure that his friend Sy regretted having not taking his own life while he still had the physical ability to do so.
That was the sum of everything I knew about MS when I was diagnosed. MS was listed by the insurance companies as a fatal disease, and doctors did very little to dispel the specter that diagnosis with MS was an eventual death sentence. Doctors, you see were scared of MS. They didn't understand it, couldn't predict its course or outcome and had nothing to offer the MS patients except possibly a course of steroids during an exacerbation. As a direct result of the efforts of the National Multiple Sclerosis Society, we know more now, that knowledge is deeply embedded in our medical education system, and there are a plethora of treatments available especially for the newly diagnosed. BUT THERE STILL IS NO CURE.
Every year my wife Laura asks permission from friends and acquaintances with MS to include their name on a list of people for whom her team walks on the team web page and letter to sponsors. This year I asked her to add Sy Zinderman’s name to the list
My own diagnosis spanned several years, and was handled much differently than it would be today. It took several years because even if the doctors I saw for various reasons were informed enough to suspect MS, no one wanted to be the one to actually utter those words. It didn't really matter they figured, there was nothing to be done anyway. They temporized by telling me nothing, and hoping I would go away before it needed to be confronted. My timeline went something like:
· 1974 - tingling in my left arm and hand - University Health Services had no wisdom for me. "Let us know if it gets worse.".
· 1975 - Optic neuritis (small blind spots in my field of vision). The ophthalmologist Health Services sent me to opined that it would probably go away over 6 months, but it might not. Nothing much to do for it if it did not get worse. Today, optic neuritis gets you an instant referral to a neurologist, and an MRI. MRIs were not used to diagnose until the mid 1980s (first one in 1981)
· 1976 - referred to a neurologist who did a lumbar puncture (spinal tap). He found white blood cells in my spinal fluid, and suspected MS. I was not told. I was 23 years old and married. My parents interceded and decided that Laura and I didn't need to be burdened with this information. It was tentative, devastating, and there was no treatment. My symptoms eventually went away. I was willfully clueless, and just happy that the headache from the spinal tap went away.
· 1979 - I had some gait problems. Limping on my right side. My internist had done graduate work in neurology and sent me in to his mentor at Columbia Presbyterian for what was going to be several days of testing and evaluation. By the time I had checked into the hospital my limp had mostly resolved. The doctor sent me home. He told me before I left:
o If the symptoms had gone away there was nothing to treat. If they came back we could treat it with a round of steroids.
o I had MS. There was no telling if I would ever get symptoms again, but his years of experience told him that it was MS. (Now my parents tell me that it had been suspected).
o It was not necessary to inform anyone, especially at work. Some insurance providers were pretty aggressive about striking people with MS from their rolls.
o Get plenty of rest. Avoid stress. Cut back on my extracurricular activities. Conserve my energy.
I did as directed. Following the last bit of advice thankfully only lasted a few months.
A few years later my doctor sent me for a CAT scan. I had to go to NYC. When I got there the scanner was down. I went back three weeks later. My head wouldn't fit in the machine--never got a CAT scan.
Keep in mind that the reasons this is handled so differently today is the direct result of money given the NMSS over the years, and used by them to sponsor:
· public education demystifying MS
· education of medical professionals
· and especially—basic research. Grants for basic research from the National Multiple Sclerosis Society come with the stipulation that all research must be shared in order to expedite the creation of knowledge in the race to find a cure.
I am a very lucky man. Despite the obvious disabilities MS remains mostly an annoyance. A royal pain in the ass to be sure. I’m not looking for your sympathy; sympathy in more than a small quantity is not empowering. I am however looking for your help and participation. Just by being here you are helping spread awareness about MS. Every dollar counts, and more importantly, every person who donates even a single dollar is now someone who “gets it.” If everyone here could ask just three other people to make a small donation, the impact would be tremendous. Think about it.
Let me tell you why I say I am a very lucky man.
· My wife of 41 years continues to stand by me. I worry her constantly, but her steadfast help makes many things possible that I couldn’t conceive of doing alone. This is very important. The divorce rate is especially high for people with MS
· For every deficit, I have a strategy.
· When my oldest daughter was born, my only goal was to live long enough to see her bat mitzvah. I now have three married children, and four grandchildren.
· I’ve never missed a day of work because of MS. My scooter and I take New Jersey transit bus to New York City twice a week to one of my clients
· I have had an active volunteer life (so much for resting at home), participating in community organizations and leadership.
· I have suffered no cognitive deficits, and everyone is very understanding if I fall asleep in an after-lunch meeting
· I work out at the gym twice a week, once with a trainer and once alone.
· My wife and I enjoy long walks and bike rides with me riding on my hand powered tricycle.
The thing that bothers me most about having MS is the amount of time I must spend thinking about things that other people take for granted. From always knowing where all the restrooms are, to strategizing on how to get the cup of tea from the counter to my easy chair without making a mess.
I’d like to conclude by thanking each and every one of you for participating in this great fundraising event. Both your participation and your contribution helped the National Multiple Sclerosis Society in its efforts to support, educate, and most of all find a cure for MS. Please talk your friends about the fun you had and what you learned at this event. Post about it on Facebook; tweet about it. Help us push back against ignorance, and work toward a world free from MS.