Learning how to live with MS takes time. Only through experience can someone learn which things in their environment trigger an MS flare. Many of these triggers can come as a total surprise.
To find out more about your experiences, we reached out on the MultipleSclerosis.net Facebook page and asked the community to fill in the blank: “I was surprised that ______ causes my multiple sclerosis to flare.”
More than 400 people responded. Here is what they shared.
Art that resonates with me changes depending on where I am in my life, how I’m feeling, and what I’m facing. Some things I loved at certain points in my life I love because they spoke to me at that time. I think if I were to first see some of them today, I would not connect in the same way as I did back then. I have some pieces that spoke to me during dark times that I chose to let go when times changed and they no longer brought me solace. Others have endured through life changes and still resonate.
Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.
To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”
More than 150 people responded. Here is some of what they shared.
Joy seems to morph. Be open to fluid change. The changes in MS will make you see the ebb and flow. Ride the wave. The current might bring you to a hobby you would never try.
Yah yah, flowery language aside. Embrace the change, people. Try to at least. MS is about trying. Try on many faces until it fits. It is kinda like jeans. You try on several pairs. If your butt looks good, buy them. If you can do it and like it, try it. But, remember to rest and don’t get hot.
Try a new hobby. If MS changes, try another. If it is not for you, try another. The list is endless. No tests or grades. Maybe try something outside the box.
Often the statement is said, “MS took from me…(fill in the blank)…” Multiple sclerosis takes a lot physically and emotionally, and it is frustrating and depressing. There’s no getting around the ongoing loss and grieving process of living with a chronic and progressive illness. It deserves acknowledgement and shouldn’t be minimized or dismissed.
Being optimistic and living well with MS demands immense resilience and coping skills. It also benefits from accommodations and adaptive technology. While often described and prescribed for work and personal grooming, accommodations that support ongoing participation in hobbies are especially joy-inducing. They help reduce or perhaps delay some things on the long list of things that MS took from a person.
Accommodations are crucial for how they can make an activity rewarding and fulfilling instead of a reminder of how much we can’t do anymore. Thinking about what makes an activity difficult will help determine which accommodations would be useful for an individual.
Featuring Barry A. Hendin, MD MSAA’s Chief Medical Officer
Question: How often is an MRI recommended, and is it still needed when symptoms have not worsened?
Answer: Although there is a wide variation in the use and frequency of magnetic resonance imaging (MRI) testing in neurological practices, it may be helpful to begin by considering why we get MRI scans for people with MS.
Visits to the doctor are part of living with multiple sclerosis (MS). Whether you go routinely or once in a while, it is an ordeal. When you get to the office, you encounter challenges. We wondered what would make the visits better.
To learn more, we turned to community members on the MultipleSclerosis.net Facebook page. There, we asked you to answer this prompt: “Fill in the blank: If I could make the doctor’s office more MS-friendly, I would ____.”
I’m not a betting man but if you have multiple sclerosis, odds are in your favor you suffer from foot drop. Foot drop is that draggy, MS hex where your foot never seems to clear the floor for a normal step. It hinders your balance and can make you prone to falls.
The most popular way to beat foot drop is wearing an ankle foot orthotic or AFO.
AFO’s aren’t cheap (what medical device is?), so it would seem an AFO should have more uses than just preventing foot drop.
That’s where I come in.
After much research, here are some other ways your AFO can help around the house…
Spring is a time of fresh starts and emerging from winter. Spring is a season, a mindset, and a promise of better days ahead. Lately, spring for me is the overreaction my arms and legs give for a slight touch. Reflexes that have always overreacted to the tap on the shin or elbow are now exaggerated to a point that seems almost comical for the physical threat they pose to anyone within reach.
Spring now correlates with spasticity and spasms for me. The energy and movements my limbs release are disproportionate to the touch that triggers them. A limb’s quick return to original position and residual spasms mimic the vibration and cartoonish boing of a spring as it comes to rest.
My spasticity isn’t what I anticipated from the descriptions I’d researched over the years.