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.
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 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 readingBy Stacie Prada
It’s hard to stay motivated to do everything I think I should do to be healthy and live well with Multiple Sclerosis. It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue, and a bit of resentment that I even have to deal with MS demotivate me.
Demotivation can also come from unlikely sources. A few years ago, I saw a physical therapist for hip pain. I described the fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it. I was very flexible and fairly strong. My habits supported my fitness level.
Accurately, the physical therapist told me I had plateaued with my exercises. I needed more strength training to address the hip pain and improve my fitness level. I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, but I also stopped doing my minimum daily fitness regimen.
I took good information, and I mentally warped it into nonsense. Because my previous minimum daily routines weren’t enough, I concluded they weren’t worth doing. I justified that I was still active and exercising, I just wasn’t doing it daily.
Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense. In reality, I squandered good habits that were helping me. After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and my movements are less painful.
Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me.
The motivation that comes from excitement works better than fear. I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished.
My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving.
My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving.
Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up. I want to remember how much my body has done for me and continues to do for me and set a goal that excites me. It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset,
I’m eager to do what’s good for me, and I’m happier overall. It’s a win-win!
*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/
By: Stacie Prada
Generations offer connection with those before us, with us and after us.
When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha. It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.
Continue readingBy: Stacie Prada
An estimated 2.8 million people worldwide are living with Multiple Sclerosis, and some choose to use social media. They share their experiences, and they allow us to see their vulnerability for the betterment of all. Social media can be cold and hurtful, yet it can bring us community and kinship. It’s an individual decision to participate or avoid it. It’s scary and risky to put ourselves out there, and we need to support those who are willing to share.
I’m grateful for individuals living and speaking their truth. Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them. I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause. We need to protect our vulnerable peers, and I hope we can do this with compassion. We are better for the myriad of voices and experiences. Suffering alone is misery. Knowing we aren’t alone helps us get through the tough stuff.
Continue reading