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...
1993 was a normal year. I was a 20-year-old classically trained opera singer with a normal life. I was a tall female, and it always seemed like I was getting the short end of the stick in relationships. I didn’t know it, but another short end of a whole new stick was heading my way.
In December, my left arm went numb. Blood tests, an MRI and a variety of other tests were performed. Brain cancer and Lou Gehrig’s were offered as possibilities, but nothing certain. Advice was to observe and watch. For two years, there were no additional symptoms, which put me in the persistently uncertain world of “no news is good news..."
You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability?
These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you...
When my three kids were little, we often whiled away long car rides by playing something called The Name Game. It worked like this:
Someone would say the first and last name of either a real person or a fictional character everyone in the car knew, which meant we had a lot of Star Wars and Harry Potter references.
Have you ever seen social media accounts of people who are super-busy, who seem to be moving, networking and taking pics of every glorious moment of every day? As I scroll through Instagram, Facebook and Twitter, I often wonder when our culture decided that being perpetually on-the-go and always clutching a long to-do list are quintessentially American values.
It doesn’t seem to matter what form this flurry of activity takes. It can be anything from a gym workout, a 20-mile bike ride on a lovely trail, a hiking or kayaking excursion amid vivid scenery, images taken from the stands at a children’s event or game, attending a Pinterest-perfect party, or visiting the new, artisanal, farm-to-table restaurant during its opening week. The pressure is on to keep yourself busy, busy, busy...
“I can’t do that I have MS”
“I would never manage it”
“I’d love to do it but I just couldn’t”
“I’m too tired to exercise”
This is what I used to say to myself for at least 5 years after my diagnosis...
It first started with a limp while carrying my one-year-old daughter on a hike to Calf Creek Falls in southern Utah in 2000. After years of searching for an answer as to why my walking and fatigue were getting steadily worse, in 2015, I received a diagnosis of primary progressive multiple sclerosis (PPMS). Wow, finally I had an answer. Today, I am no longer able to walk on my own, and I utilize a wheelchair much of the time.
My progression is most likely very familiar to many with PPMS. It started with that limp, then went on to needing one cane, then two canes, then a walker, then a rollator, and finally, the wheelchair. Ah, the wheelchair. That’s what I most want to talk about. For years I resisted it even as my ability to enjoy the things I love to do and people I like to see faded into a past life. My wife would say, “Steve, use a wheelchair if you need to. It would make things so much easier.” But pride got in the way. Finally, I gave in. And what a difference it has made...
Dizziness is the bane of my existence. It’s my most persistent and irritating MS symptom. It’s led to a long list of restricted activities: amusement park rides, drinking caffeine or alcohol, cartwheels, reading on a road trip, certain yoga positions.
Obviously, none of these activities are essential. But even with strict adherence to my self-imposed “dizziness avoidance rules,” I still have those days when I can’t escape that woozy, cloudy feeling that I call “dizziness” (because nothing else describes it quite as well)...