If you are reading this, you are using the Internet. If you leave a comment, “tweet” this, or post it to Facebook, you are using social media, which is defined as “websites and applications that enable users to create and share content or to participate in social networking.”
Many people with MS love to get engaged in social media and talk about their MS, as well as hear about the experiences of others. I’m at the 2015 conference of the European Committee for Research and Treatment in Multiple Sclerosis (ECTRIMS) and I was given the task to present a talk to neurologists entitled “How People with Multiple Sclerosis Use Social Media.” I’ll share with you what I told them.
As the 47th lieutenant governor of the state of Illinois, a wife, a mother of three and a person diagnosed with multiple sclerosis, I have a very full, but hectic life. I work every hour that I’m awake serving the people of Illinois.
My MS journey started in 2010 when I suffered an accident while walking. This fall resulted in subsequent MRI and medical examinations that revealed I had MS. At first, I had the blues — as you know, this is not an easy diagnosis to take. My husband was instrumental in helping me push forward by encouraging me to run for Wheaton City Council and to take a teaching position on top of being a trial attorney. With the support of my family and neurologist, I vowed to never let MS stop me...
When I was 7 years old, my mom was diagnosed with relapsing remitting multiple sclerosis, but I never actually realized what was happening to her. I was a young kid with a normal mom who just happened to have MS. However, when I was 15, my mom came home from an appointment with her neurologist, and I finally understood what MS was. For the first time I could remember, my mom’s MS had progressed, and there was no way I could stop it.
No one wants to see anyone suffer, but it is especially hard to know your mom struggles every day with a disease that currently has no cure. My mom has always been – and will continue to be – one of the strongest and biggest inspirations of my life, but realizing what she deals with everyday motivated me to do more. I started asking what I could do to ease the burdens my mom faced. I helped more around the house. I let her hold my arm when she felt unstable. But I still couldn’t change my mom’s MS...
Ten years ago, I never would have thought I'd be 27 years old going to Wal-Mart at 11pm to hastily shop for a cane. I didn't even know the proper hand to hold it with. I found a $12 black collapsible cane that wasn't terrible and I was happy to have something for the next morning's commute. Getting to and from work had become pretty tough; it took 2 ferries and 2 busses with plenty of walking in between.
That first commute with my new cane was a learning experience, that's for sure. Right off the bat I noticed people's glances lasted longer. If my tattoos and piercings didn't get their attention, the cane sure did. I could sense the frustration of people having a hard time getting around me in the crowds. My coworkers on the other hand were super helpful and supportive...
From a young age, I have been interested in the science behind my mother’s multiple sclerosis diagnosis. I knew that I wanted to be part of the medical community. After many years working in the hospital during my undergraduate career, as an emergency medical technician, as well as shadowing neurosurgeons and performing research during my master’s program, I chose the bench (research) over bedside (treating patients). At that time, a majority of therapies targeted symptoms, not the source, of MS, and there were no therapies available to treat progressive MS. So, I have researched neurodegeneration and repair in the brain; specifically myelin repair.
In July, I started as a National MS Society research fellow at Northwestern University Feinberg School of Medicine in the lab of Stephen D. Miller, PhD. In addition to my focus on myelin repair, as a neuroimmunologist, I have the opportunity to pursue selective immune suppression. Ideally, selective immune suppression will lead to decreased (or even absence of) relapses, and myelin repair will mean the ability to repair damage. As neurodegeneration underlies MS, effective disease-modifying therapies need to both regulate the immune system and promote restoration of neuronal function, including remyelination. Soon, I hope to be able to move from pre-clinical therapeutic trials into patient trials – and improve peoples’ quality of life in all stages of MS...
We recently sat down with Dr. Deborah Miller of Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to discuss parenting with MS. Here’s what she had to say:
Tell us about your role at the Mellen Center.
I am a master’s prepared social worker, which means that I have clinical experience working with individuals and families with MS. I also have a PhD in Health Services Research. I do a lot of work in developing measures that assess patients’ reactions to different interventions, as well as their responses to illness. I also develop interventions to help people better manage their MS. It’s been a wonderful combination of having the hands-on clinical experience to understand the issues people are experiencing and the ability to conduct research that will allow us to more systematically manage the issues that people with MS and their families commonly face...
Think back to when you were eight years old. What did you consider awesome back then? And how does that compare to what you consider awesome now?
Certain words or phrases take on different meanings as one journeys through life. I started thinking about this the other day, when I told my wife I needed to find my second wind...
Seven months ago, in the frigid pre-dawn hours of January 5th, two New York state police officers stood in our kitchen. They explained to my husband and me that our beloved, yet very troubled, son had taken his life, and at that moment I forgot I had MS.
Oh, there have been other times since being diagnosed in 1999 that I wasn’t aware of my condition, but it was always lurking, ready to once again take up too much of my thought. On that morning it was the furthest thing from my mind, and it stayed that way as our now family of three stumbled through the next few horrible weeks...
“Do you think a cane would be helpful?” my wife asked after watching me narrowly avoid a fall, and not for the first time. I was diagnosed with primary progressive multiple sclerosis three years earlier, and I was only starting down a path that would, fourteen years later, leave me unable to walk, work, or take care of my own daily needs.
I knew the answer to Kim’s question. However, if I responded with a “yes,” she wouldn’t have let the issue rest until I bought a cane, and rightfully so. But I wasn’t ready to wear that scarlet letter in public – to let everyone I might encounter know that I was weak or feeble. My life had been about achievement – physical, academic, professional – and I wanted to remain that guy...
Intimacy with a neurological disease can make things interesting, to say the least. At 25 years old I never thought I would have to worry about my ability to have sex with my wife. It's not a symptom of MS many people want to talk about. But I am not scared.
There have been many ups and downs (hehe) along the way. At one point I decided to try the pharmaceutical route — you've seen the commercials. Do they work? Yup! But the side effects that I experienced were uncomfortable. My face was a bright glowing red and I couldn't breathe through my nose. It was awkward to be ready to go while feeling so terrible, and Meg could see my discomfort. It was all around bad. I tried taking a much smaller dose which helped a lot, but not enough...
Multiple Sclerosis is a complex disease that has impacted families across the country for far too long. As a United States Senator and as the Ranking Member of the Senate health committee, I believe Congress should be doing everything we can to help the patients and families who are impacted in so many ways by MS. But I also believe this strongly as a family member — because I have seen firsthand how devastating this disease can be.
My father was a World War II Veteran who was one of the first to storm the beaches of Okinawa, and was a recipient of a Purple Heart. Many years later, he was diagnosed with MS...