The Decade of the Brain and Possible Progression?
When I was diagnosed in 1986 my parents wanted me to get a second opinion. We drove into Manhattan to meet with a highly recommended neurologist who took a look at me and my MRI. He quickly came to the same conclusion that I had multiple sclerosis.
At the time the school of thought was that your first two years of MS would be your map of how your MS would be for the rest of your life.
Our New York City neurologist went on to say that we didn’t have much to worry about because Newsweek and other publications were declaring the 1990’s the “Decade of the Brain.” A cure would be found in the next five years, he proclaimed, and that would be that.
According to The Library of Congress:
“From 1990 to the end of 1999, the Library of Congress and the National Institute of Mental Health of the National Institutes of Health sponsored a unique interagency initiative to advance the goals set forth in a proclamation by President George Bush designating the 1990’s as the Decade of the Brain: “to enhance public awareness of the benefits to be derived from brain research” through “appropriate programs, ceremonies, and activities.” To achieve this public recognition, the LC/NIMH Project on the Decade of the Brain sponsored a variety of activities including publications and programs aimed at introducing Members of Congress, their staffs, and the general public to cutting-edge research on the brain and encouraging public dialogue on the ethical, philosophical, and humanistic implications of these emerging discoveries.”
I believed what my doctor told me. I was young and naive and believed whatever I was told. There were no approved medications. There was no internet to rely on. I was lonely, scared and tucked my small bottle of hope away on a shelf for future use.
I was counting on a cure
My relapsing-remitting MS went on as discussed with sporadic weakness, numbness and dizziness. The symptoms came and went. Came and went. Came and went. What stayed was the numbness on my right side. It felt, and continues to feel, like someone wrapped two thick ACE bandages around my right foot and leg and has been unwrapped for the last 25 years.
I’ve changed neurologists a few times over the years. My latest one is young, a woman and highly skilled. She looks at the “whole” person, which I love. How am I feeling? What’s new? Would I like a prescription for massages? Do I have any more questions?
Is that aging or MS?
These days my 57 year old body is changing in ways that are expected yet unexpected. Overwhelming fatigue (more than usual.) Is that aging or MS? Bouts of incredible dizziness. Aging or MS? Bladder issues. Aging or MS? Stomach issues. Aging or MS? And so on.
My new neurologist insisted I get 3 MRI’s to cover our bases. I hadn’t had one in over two years.
Results from MRI’s feels like we’re trying to solve a mystery by piecing clues of a baffling and intricate puzzle together. Only this time the puzzle is a debilitating disease that’s incurable, unpredictable and insufferable.
I wanted to hear "everything is fine"
Between a mistake with the imaging center and getting my doctor on the phone I waited on pins and needles for the results. I longed to hear, “Everything is fine. No need to worry.”
I can live with a numb leg. I can live with dizziness, weakness, fatigue, and sometimes a cognitive blip. I can always make lemonade out of lemons.
And I can live with the category of having relapsing-remitting MS.
But this time was different. This time I heard “may have progressed.”
What did she say?
I made her repeat it. May have progressed. MAY. That’s a tricky word. I asked her to explain what she meant. The thing is that after sticking a needle into my body for over 20 years I’ve had a few days here and there when I’m too tired to inject or I simply forget. Maybe subconsciously I’m simply sick of sticking myself with needles. Maybe I’m tired of fifteen minutes of not feeling well afterward. Maybe I’m disgusted with the dimples, bruises and bumps left behind.
I remembered reading this from The National Multiple Sclerosis Society (much to my dismay):
“Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.
Transition to SPMS
While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS.”
I am grateful for medications. I am blessed to have a grant that helps pay for them. I lived in a world with no choices. I’m thrilled that the MS community now has options.
I am praying that having MS for 30 years means I’m out of the danger zone.
I get tired of it all sometimes. My neurologist understood that and gave me options.
For now I’m sticking with my current medication (pun intended) and doing my best not to be too tired or forgetful at the end of the day. It’s the best I can do for now, to do whatever it takes to make sure that, hopefully, nothing progresses.
I have hope and I have prayer
Please remember that we all have MS differently. We all react to medications differently. We finally have choices (depending, of course, on your insurance plan.)
My choice is to do my level best to stay as healthy as possible in my 50’s, 60’s, 70’s, 80’s and beyond with the medication I am on combined with a healthy diet, moderate exercise and positive living.
It’s all about quality of life. The Decade of the Brain is now! Take care of YOU and I will be happy, dear readers. Do the best that you can within your abilities.
Bless you all.
How many specialists did you see before finding "The One"?