When I was diagnosed with multiple sclerosis way back in 2001, I learned that that MS primarily affected women who were between 20 and 40 years old. Then, and now, MS affects two or three times as many women as men. Those statistics made it easy to pigeonhole the condition as one that mostly mattered to women of childbearing age.
But recently we’ve heard about several young men such as Jack Osbourne and NHL goalie Josh Harding who have been diagnosed with the MS. The latest news is that NASCAR star Trevor Bayne has been diagnosed...
Have you ever run across the “Know-It-All”? You know, the guy or gal who has done, seen, tasted, smelled, tried, succeeded at (hardly ever failed – at anything), read, studied and/or experienced whatever topic might be at hand? And have you noticed that these KIAs (might as well give them a name, right?) have opinions about a subject that are almost always diametrically opposite yours on just about everything? It seems sometimes that these KIAs can only feel themselves to be right by making the rest of us feel like we are somehow wrong.
How about the MS KIA?
The Unspeakable Bits From a Life With MSI believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment.
Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!
Today, we celebrate the 23rd anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA is landmark civil rights legislation that resulted from the intense and selfless activism of individuals and groups including the National MS Society who fought for their right to receive equal treatment and access. Because of their activism, today, the rights of people with disabilities are protected in several areas including education, employment, public services such as public transportation, public accommodations (restaurants, hotels and retail stores) and telecommunications. Since the ADA’s passage, great strides have been taken to improve the quality of life of people with disabilities and to allow them to more fully participate in and contribute to mainstream society.
Even before I was diagnosed with MS in 1987, I personally witnessed others benefit from this statute. Prior to the ADA, in my role as a health center professor and teacher at the University of Florida, I saw how difficult it was for “students” with disabilities to mainstream in medical training. After the passage of the ADA, other faculty members and I developed teaching and diagnostic aids to help students work hard to complete their dreams of becoming health professionals. We used translators and transcribers; we developed augmented stethoscopes and other diagnostic aids; and our school upgraded buildings to make them physically accessible with ramps, automatic doors and elevators. In 1986, when I started experiencing symptoms of MS (fatigue, numbness and motor deficiencies), I was able to continue my work as health center professor, teacher and researcher due to accommodations made by my University.
“I feel pain when I see young people in wheelchairs.”
This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy.
I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.
The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm.
To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.
Every mom wants to do the best she can to care for her kids and keep them safe from harm: We make sure our cars are equipped with proper safety equipment like anti-lock brakes and strap them lovingly into child seats and seatbelts to protect them in case of an accident. We make sure they are wearing a helmet when learning to ride a bike. At home, we hide the dangerous chemicals and put away the knives.But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.
I have on occasion thought about moving away from Connecticut, where I have lived for 30 years, and returning to my home state, Maryland.
But whenever I start reviewing all the things I love about Maryland, I remember all the things – the people, places and experiences – I would miss if I left my current home.
You might call my wife, Kristi, and I a “Hollywood” power couple. I spent six years in the 80s (of my 20+ years in the industry) working on one of the most popular sitcoms of all time, “The Cosby Show.” Kristi is a professional voice-over artist, best known as “the voice of time” on the Food Network’s “Iron Chef America.” But… we no longer live in Los Angeles. In 2007, seeking a place that was quieter, slower and more family-friendly, we packed up our four kids in the car and moved to Spokane. Since I had been diagnosed with multiple sclerosis in 1997 and the LA heat had the potential to exacerbate my symptoms, we were also seeking cooler weather – we found it!Immediately after my diagnosis, I took up video editing (a “sitting” profession) out of fear that I’d be dependent on a wheelchair within the coming year. I still do some editing and contribute to three video companies, but more and more I’m focused on raising my kids, fishing and speaking about what it’s like having MS at various local National MS Society events. I am not dependent on a wheelchair – I’m proud to say that my MS has been successfully controlled by treatment.
I never considered myself an MS activist, but the lobbying efforts happening in Washington, D.C., to keep MS research funding in place along with my own personal experiences dealing with MS since 1999 has made me reconsider. I need to become more involved with the issues that all people with MS face every day—issues that range from building accessibility to health insurance coverage to the complex web of Social Security Disability, Medicare and Medicaid.
I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIG infusions after I experienced complications with one of the other infusible drugs. She ordered it, but my health insurance denied it on the grounds it was not an approved treatment for MS. I appealed; they denied it again. My doctor appealed with supporting documentation and they still denied her request. Many people have used IVIG for MS. Some other insurance providers cover the cost, but not mine. So I called a local TV station with a large news staff, some of whom are dedicated to consumer advocacy issues. They have started an investigation on my behalf and are considering a story on the bigger issue of who is really making our healthcare decisions. Stay tuned! This experience and my boldness made me realize that activism has many forms. You don’t necessarily have to go to Capitol Hill to be an activist—you just have to fight for what you believe in and need. Go to nationalMSsociety.org/appeals for more information on health insurance appeals.
Dealing with the Social Security Administration is a whole different ballgame, but they also need to level the playing field. I was denied Social Security Disability Insurance (SSDI) three times because at the time of my application I did not have enough working quarters immediately prior to my total disability. Even though I had dozens of years of continuous employment during which I paid into the system, I was penalized for being a stay-at-home mom. The rules and regulations must be changed to address the realities of those with MS who cannot rejoin the active workforce in order to establish their eligibility for SSDI. Loopholes in the Americans with Disabilities Act still allow businesses, municipalities and even our healthcare system to pay lip service to the goal of providing disabled citizens meaningful access to public spaces. This is one thing we can all do something about. Complaining has its benefits. Squeaky wheels sometimes get greased. We people with disabilities must, as a class of citizens, speak up even when we think no one is listening. We must. Or else the drugstore will remain closed to me and anyone else who requires an automatic door. The local government office where handicapped parking tags are issued will remain inaccessible because of concrete stairs and the absence of a ramp or elevator. Even the front door to a local MS clinic will only open to patients with the help of others. So as a group, let’s advocate for each other, by advocating for ourselves. Become an MS activist, like me.
Learn more about self-advocacy at nationalMSsociety.org/selfadvocacy.