MSAA strives to be a leading resource for the entire MS community by improving lives today through vital services and support. We could not accomplish this without the help of our volunteer board members. MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission. With our ongoing series, Meet the Board, we hope to introduce you to our wonderful volunteer board members! Continue reading
In a recent article posted on MultipleSclerosis.net, author Kim Dolce describes her first appointment with her neurologist upon receiving her MS diagnosis. The doctor began questioning her history of childhood illnesses—and this caused the floodgates to open. She realized she had been living with MS for decades. Suddenly, the pains she suffered in her legs at age 8, and the loss of balance that caused a bike crash at age 12 made sense.
Looking back, she could see that these previously inexplicable problems were no longer inexplicable. This disease had been part of her life all along.
Learning this doesn’t necessarily change her treatment plan, but it does bring Dolce some clarity along with some peace. Her past makes sense.
We recently posted her article on the MultipleSclerosis.net Facebook page, and asked if you related to her experience. More than 100 of you reacted to the post, and many of you commented.
Here’s what you had to say.
“I can remember the aching legs from age 8.”
For many of you, Dolce’s article brought clarity to your own pasts, making sense of events and experiences that otherwise went unexplained. Because you didn’t receive the diagnosis until much later in life, you went through childhood and early adulthood with pains and aches that didn’t fit with what the doctors said. At the time, the pain brought confusion and frustration.
“I was diagnosed at 59, but when reading the above article, I can remember the aching legs from age 8 or so every night, sobbing my heart out and the doctor telling my mother that it was growing pains. That could very well have been the first sign that I was a candidate for MS!”
“I fell often before doctors knew what the problem was.”
“I’ve had undiagnosed symptoms for 40+ years.”
Unfortunately, this scenario seems all too common: That many of you lived with symptoms for decades. As challenging as the physical symptoms were and are, the problem was exacerbated by the not knowing. There’s no community of people to relate to if you don’t know what you’re dealing with. Often, there’s less empathy for problems that don’t come with a diagnosis. Many people find it hard to understand or relate to pains and problems that aren’t named. And only when there is a diagnosis can people understand what is happening to you.
“I’ve had undiagnosed symptoms for 40+ years. I was only recently diagnosed in 2016.”
“I was diagnosed back in 1987 couple flare-ups then and one about 25 years ago. Nothing since but extreme bouts of fatigue!”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening.”
Although getting the news of your diagnosis is never easy, for some of you, the diagnosis was a turning point that brought some relief. The diagnosis meant that you now knew what you were dealing with. There was suddenly a map—a direction that others had taken, so at least you knew how to handle this place called MS.
“Wouldn’t have helped knowing early in because there was no treatment. Soon as I was diagnosed, I began treatment, which helped immensely.”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening with my body. I may not like the diagnosis, but I can now get the proper treatment for my future.”
We want to say thank you to everyone who participated in this ongoing conversation about MS. We hope that this post, as with every other one we share, serves in shedding light on the experience of living with MS, and fosters a sense of connection and community among readers.
By Lauren Kovacs
Aside from eating lots, being merry, and not worrying about the summer heat, we try and keep some traditions. Napping with a cozy blanket, of course, is a given. As my boys have grown, some Christmas traditions have changed. Some changed for the better, others I miss, and some result in teenage whining.
For a family photo, I have had the boys make Continue reading
By Stacie Prada
I love family traditions. They’re unique to each family, and they bond us to each other. Sometimes it isn’t until we’re older that we realize there are other ways to celebrate. It’s also not until we talk to each other that we realize traditions we love may not be universally liked.
Throughout my youth, Santa always included an orange in the toe of my Christmas stocking. As an adult, I feel like Continue reading
“A candle loses nothing by lighting another candle.” – James Keller
It’s crazy to think it’s December and that 2018 will soon draw to a close. December brings so many wonderful holiday traditions. Each is celebrated by cultures, families, and communities around the world of differing faiths and backgrounds. This year, I Continue reading
Do you love candy canes? I know I do! It’s a candy cane time of year. Once the pumpkin spice rolls out of here, it’s time for peppermint. If you are looking for a yummy candy cane treat then this holiday recipe is for you. Share with neighbors, family and friends. It also makes a great gift idea, too. Continue reading
By Alene Brennan
In the midst of the holidays, with all of the shopping, decorating and parties, there is a moment when all is well. A moment when the chaos quiets and I am reminded of the true meaning of the Christmas holiday. It’s a moment that I’ve treasured since childhood and now living with MS, I treasure it even more.
It arrives Continue reading
This is a quote from one of my all-time favorite Christmas movies, The Santa Clause. When I heard the quote again this week watching the movie for the millionth time, it got me thinking. What does this really mean? For purposes of the movie plot they’re talking about it in terms of jolly old St. Nicholas and the happenings at the North Pole. But I started to think Continue reading
The holidays can be a joyous time of celebration and cheer. But they can also be stressful and challenging. When it comes to expectations of what should be done throughout the holiday season, financial limitations can be especially difficult. For those who could use some extra holiday help Continue reading
MSAA is very proud to present our 2018-19 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS), like Terry (below) who is an Illinois artist with multiple sclerosis.
We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.
|Terry Grzelso – North Barrington, Illinois
About the Artist
“Over the years, a variety of crafts and hobbies like lettering, detailed baking, and furniture refinishing filled my free time. As I’ve slowed down considerably, attention to my immediate surroundings and nature have provided new learning perspectives. I have found enhanced spiritual connectedness. New learning and artistic endeavors have truly supported my quality of life.”