By Suzanne Marriott
Living with MS can be challenging, but planning for an emergency while dealing with MS can be overwhelming, and sometimes “The best-laid plans of mice and men often go awry,” to loosely translate Robert Burn’s poetic admonition. That’s what happened to us when I thought I had planned for every contingency and possible emergency before we headed off on a trip from our San Francisco Bay Area home to San Diego for a little R&R.
By Chernise Joseph
If you’re reading this, I know you are already familiar with some type of ‘emergency’, perhaps fortunately or unfortunately depending on your perspective. Multiple sclerosis in itself has thrown us into a world of constant emergencies, however planning for them is an entirely different ball game that can (and will) make life so much easier.
Let me tell you a little story of my experience with emergencies in the last eighteen months or so. Last year, I took a ‘sabbatical’ and decided to sell everything, leave my home in Texas, and drive over a thousand miles up to Yellowstone National Park. No, it wasn’t because of the show–I hadn’t even heard of ‘Yellowstone’ until I started working there. I just wanted a fresh start and I had never been. Seeing The Tetons in person had been on my bucket list since high school, so it was true nirvana to stand in front of mountains that looked like screen savers.
MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Sue Lawrence-Reeder as the August Artist of the Month. Sue is from Monmouth, ME.
By Suzanne Marriott
` Two roads diverged in a wood and I –
I took the one less traveled by,
And that has made all the difference.
Robert Frost, The Road Not Taken
My husband, Michael, had MS, but that didn’t stop us from doing the things we loved, and the most important was travel. The challenge was learning how, not if, we could do it. Of course, we had to make many changes and accommodations in order to maintain this lifestyle.
When Michael was still walking, using his two hiking poles for balance, we bought a small, used RV and traveled up the coast of California, our home state. It was summer and I was free from my job as a teacher. As my husband’s caregiver, I made sure our little home on wheels was well stocked with all the things we would need, including all the paraphernalia that MS required.
But the day we were to leave, it was too hot and Michael realized he couldn’t drive in that heat. So our first accommodation was to embark on our trip in the evening, when it was cooler. As a former truck driver, Michael was used to driving at night, so off we went, enjoying the moonlight and a dearth of traffic.
With advance reservations secured, we stayed in California state parks in the parking areas authorized for persons with disabilities. This meant we were close to the toilet and shower facilities. All states have qualifications for their state parks’ disability status which provides many advantages, such as park-use discounts. For California information can be found at https://www.parks.ca.gov/30959.
There came a time when Michael could no longer walk. His HMO provided him with a power wheelchair, and we bought a used van with hand controls and a wheelchair ramp. Having the van meant that Michael was able to continue driving even as his disability increased. With some seat switching, I could also drive when needed. Soon we begin taking advantage of sightseeing closer to home. Living in the San Francisco Bay Area, this included the wine country, San Francisco itself, and the nearby coast and parklands. Sometimes we made longer trips, staying in motels and inns with accessible rooms. As always, the key was preparation and planning ahead.
For Michael and me, travel was something we refused to give up. The challenge was always figuring out how we could continue doing the things that we loved and what modifications we needed to make. Travel allowed us to continue having joy and fulfillment in our lives. If you’re thinking of travel, remember, it takes determination, creative thinking, and planning ahead. So go for it. And have fun!
By Stacie Prada
My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that included overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods that disrupt my daily routines, and that means day trips solidly allow. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.
Continue readingMSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Alfred Haymond as the July Artist of the Month. Alfred is from Altadena, CA.
When asked, what’s his ardent fascination with black & white photography – Alfred Haymond readily explains, “There is just something so quaint, therapeutic, and very nostalgic about the medium.
Originally from Los Angeles, Alfred is a self-taught yet accomplished photographer whose approach is described by him as simply, “observational photography, the art of finding those mundane occurrences happening all around us and visually documenting them.”
Diagnosed with MS in 2011, Alfred decided to take a daring leap, going beyond a mere hobby to sharing his work with the greater community. Alfred reflects, “I had received some life-altering news at the time and figured I should do something meaningful with my photographs rather than let them just sit in boxes out in the garage.”
The vintage architecture, rural landscapes, intimate pictorials, street photography, and fleeting scenes of Americana are the stories poignantly and continuously told through the lens of his camera.
To see more about Alfred and the rest of our artists, please visit our Art Showcase
Featuring Barry A. Hendin, MD
Question: What types of speech problems may be caused by MS and what can be done to improve these issues?
Continue readingBy Suzanne Marriott
It is known that exposure to heat causes a worsening of symptoms in people with multiple sclerosis. This was certainly true for my husband, Michael, who suffered from MS. Our first experience with hot weather was when he was first diagnosed and was waiting outside his doctor’s office for me to pick him up in the car. Unfortunately, I got confused trying to figure out the correct exit from the parking garage and he was left standing outside in the warm afternoon. When I finally picked him up, he said, “Why did you do this to me?”
We hadn’t realized that the heat would affect him. We’d both thought that he’d be better off waiting for me to pick him up than walking all the way to the car. But he had weakened considerably in that short period and had been afraid of falling down. He later apologized to me, realizing I hadn’t meant to abandon him to the heat, but we had learned an important lesson that day, one we never forgot.
Continue readingBy Stacie Prada
Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish? When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?
Each season or time of year has a different set of inherent challenges that aging and multiple sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges.
Continue readingBy: Suzanne Marriott
I remember when my therapist reminded me that my husband was often in survival. She was referring to the most basic of human needs as defined by Abraham Maslow in his Hierarchy of Needs.
Continue reading