I try not to look back. However, this summer marks the 30th anniversary of the Americans with Disabilities (ADA) Act. So, I let myself peruse my memories a bit.
I didn't know I had MS until I had had it for decades. I was 40 when I was diagnosed with RRMS in 2014, and I have used a wheelchair ever since.
Sometimes life throws you unexpected curveballs that unknowingly turn out to be priceless life lessons. A silver lining is how I think of my MS and what I often tell people when they ask about my diagnosis.
Back in 2016, I woke up and the left side of my face was numb. I did not feel like Jenny. I felt like a completely different person with a numb face and a throbbing head. I trusted my gut and went to the emergency room after a few days of sitting on these symptoms. After a quick workup, they dismissed me quickly and said I needed to rest, take a day off work, drink plenty of fluids, and that these symptoms would subside quickly. I did as I was told, but still did not feel like me...
Coming to terms with having a chronic, incurable illness like MS doesn’t happen immediately. It takes some time to reorient yourself to a different reality – to be able to accept that things have changed. Acceptance of a new normal, of peacefully coexisting with the new limits an illness has placed upon your life, is not instantaneous.
For me, the road to the uneasy peace I’ve tried to make with my course of relapsing-remitting MS has not traveled in a straight line. Despite all the reading and researching I’ve done, despite how much my awareness of the disease has been raised, I still have my blind spots. There are times when I am in denial about what living with MS means...
Is it possible to look presentable with MS?
Being young and having MS comes with a lot of challenges. One of which is the ability to be trendy/well-presented whilst battling weak limbs, pain or hands that don’t always work...
I pulled into one of the several, empty handicapped parking spaces after seeing that none of the unmarked spaces were available. This particular lot was, by my estimation, the best place to park on the university campus for me to preserve my dearth of energy.
I would be teaching two classes located on the opposite ends of the campus. I’d have a 10-minute break in between – a break that would not long enough for me to get from one building to the other in time. Once inside the second building, I would have to strip off layers of clothing due to the intense heat and humidity inside the room, which trigger my MS-related heat sensitivity. Following the three-plus hours of instruction, I would walk back across campus to my car and gird myself for a more than one-hour commute home in gridlock city traffic...
Drag and drop is a function that makes our computing lives easier. But what if that function is part of your everyday physical life? In other words, your foot drags and drops, and you fall if you’re not quick enough to catch yourself. This condition is called “foot drop,” and it’s a common symptom of MS that compromises mobility.
It triggers fear of falling and has potential to cause serious injury. Fortunately, there are devices that can help mitigate foot drop and keep a person upright even during exercises like running. One of these is the ankle-foot orthosis (AFO). And for those living with MS, like the resilient people we talked to below, the AFO helped them continue their passion for exercise...
Muscle and body aches
Shooting head pains
Loss of taste and smell
These are some of the symptoms of COVID-19...
For many families, summer is all about the outdoors—bike rides, barbecues, lake days or trips to the park.
That’s great… if you have the energy for it...
My isolation started before COVID-19, and I don’t think I understood how isolated I had become until the pandemic, when I have oddly felt more at ease.
You see, I have primary progressive multiple sclerosis and, as of last summer, after major emergency surgery, the added limitation of an unexpected ostomy bag. A double whammy. And I am over 65. Even without COVID-19, my life had slowly become smaller and smaller, and it got harder and harder for me to do the things that I love and that define me..
Last month, we celebrated World MS Day on May 30.
We stand "connected" with our MS family throughout the world by raising awareness for this disease. But this month, America is hurting and managing the impact racism is having on our country...
Now that I’m retired, there are so many things I want to do. Among them is learning how to draw. I am fascinated by the ability to create portraits, landscapes, bowls of fruit and so much more from a humble charcoal pencil, and I’ve always wanted to learn how to do that.
I signed up for a drawing class, put on by a local recreation department. It was raining ferociously on that first day as I got out of my car and approached the building in my walker. It was pretty obvious from a distance that the main entrance had stairs in the front, and I assumed there was another, accessible entrance. But as I got closer, I realized that the stairs were the only way into the building. The door was also closed, and there was no sign or anything else saying what to do if you had questions or problems...