Multiple Sclerosis Centers of Excellence
Living with Multiple Sclerosis
Dave Anderson -- Hennepin County, Minnesota
MS came into my life in 1981 when my left side suddenly went numb. Two days later, the feeling returned and I continued with my life unaware of what this numbness might mean. My next, and most severe symptom, was optic neuritis in 1990 when I suddenly lost the vision in my left eye. Thankfully, steroids allowed my sight to return. My eye doctor mentioned that my loss of vision could possibly be an indication of MS, which I chose to ignore. All was quiet again until 1996, when I experienced entirely new symptoms. This led me to a neurologist who confirmed the diagnosis of Relapsing-Remitting MS.
My reaction to this diagnosis, I would learn, was common. My emotions went full spectrum and were mostly negative. I felt that my future had been snatched away, just when I was at the peak of my career in computers and the Internet. It was a tough road and it took me a couple of years before I saw that life with MS could be “okay” – not great – but “okay”. The rock-solid support of my wife, Marian, was key in making this possible for me.
Soon after my diagnosis, Marian and I went to the National MS Society (NMSS) office in Minneapolis where we met a wonderful woman, Jeannie, who guided us through the realities of living with MS. I have taken advantage of the many NMSS resources available, including self-help groups, seminars, weekend retreats, and much more. I highly recommend using the services of the NMSS as they can offer valuable support and information.
Being involved in the Internet at work, I naturally sought out information on the web. I was looking for a way to talk to others who were newly diagnosed to see what they were doing to manage their MS. I was fortunate to find MSWorld.org and became a frequent visitor to this site.
Over the 11 years I’ve been using MSWorld, I became a volunteer and now serve as Vice President. It is an amazing group of 30+ volunteers with MS who manage the website. There are more than 30,000 registered members from around the world. MSWorld is a free service that is there to help people with MS, and their loved ones, when the need is most urgent.
I receive outstanding care for my MS at the Minneapolis VAMC. I have also been fortunate to be able to volunteer for a number of programs; including training sessions on using the web-based program MyHealtheVet and facilitating a 6-week course for people with chronic health conditions to help them better manage their illness.
It is my belief that our attitude has an effect on our health. Once I decided to learn how to take charge of my MS, I knew it was up to me to stay as healthy as possible, albeit not perfect, so I am able to do the things that matter in my life. I know the medication I take for my MS works for me and I take it faithfully, as prescribed. We all hope for a better quality of life. I found that taking charge of my health has helped me live that hope.
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Update
A lot has happened since my first article for the MSCoE newsletter in 2009.
I’ve been very blessed that my MS has become very stable over the past few years. I’m hoping this is what I can expect from here forward but I’m also not taking any chances. I’ve learned that being proactive about MS and health in general is very important. I get regular check-ups with my neurologists, take my MS medication as directed, keep my weight, and exercise levels where they should be. No magic here, just common sense. We Minnesotans are supposed to be good at that so that’s my story.
On the positive side of this, I feel good and can do what I want to enjoy life. This is quite a change from where I was after diagnosis in 1997 when I took up residence in my “cave”. Those were dark days and I’m glad they are behind us. I’ve learned that my experience with getting an MS diagnosis is pretty common, and we all have to learn in our own way how to make this work for us.
I remember being told by my neurologist that someday you won’t think about MS every waking moment. My response was, “Yah, right!” I really didn’t believe him when I was busy taking inventory when I woke up each morning to see what worked today and what didn’t.
One thing I did for myself and for my wife was to seek out the guidance of a talk therapist to learn how to come to terms with my feeling of loss of our future. I really did feel that my life as I knew it was over. Dealing with depression and fear of the future is something that professionals can help with that family members cannot. An outside perspective was what I needed to begin planning again.
One of the things my therapist had me do was to put together a list of what I wanted to be doing in 5 years, without considering MS as a factor. It seemed like wishful thinking at the time but looking back, I see the value. I still have that list and I have looked at it a few times. The good news is that the things that truly mattered to us did happen although it took closer to 10 years to happen. Looking forward seems to be a therapeutic endeavor as opposed to being “stuck” in the fears of the present. Seeking help with emotional issues isn’t a weakness. I’ve learned that it’s just another medical problem that trained professionals can treat. I’d encourage any of you struggling with the emotional side of MS to seek help.
I recognize that my story may be quite different from others as everyone’s MS is unique. I just hope my story can give you a bit of inspiration that, as I said in my first article, life with MS can be “okay”.
