When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).
Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.
To find out more about the MS community’s experiences, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What is one thing about MS that you wish people understood?”
The lessons that living with MS has taught me are abundant. I have lived with this disease since I was in my very early 20s. Some of the most pivotal years of a young person’s life. I had big dreams of being a sports reporter. I did seven internships throughout my college career at Penn State University. The truth was, I was just downright hungry and would do whatever it took to be able to say, “I made it.”
My last year of college was a pretty exciting time for me. I had just finished an internship with the B1G Ten Network. The show I helped produce won an Emmy Award, and I had just landed a new gig straight out of college for an ABC affiliate in Harrisburg, PA. I was about to take on the biggest news story living in the sports and news world at that moment. Penn State was amidst a horrible scandal that rocked the nation. I was assigned to cover the courtroom news for this story. I spent eight weeks living in a trailer parked in a Walmart parking lot close to the courthouse. I was doing live shots next to CNN, Fox, ABC, and ESPN. I was on top of the world, or so I thought…
Going back to school is filled with excitement, and possibly fear. Depending on what grade or level of schooling you’re about to enter. I know the feelings of starting a new school year but have not yet experienced it from a parent’s perspective, until now. And boy, is it tough.
As I pack up my little girl to go to her first day of daycare, I can’t help but think to myself how is she going to feel without me? Will she think I abandoned her? Will she know that I am coming back? I know every parent has a feeling of extreme guilt when dropping their child off at a place that is unknown and possibly scary to them, even if it is in their best interest. Here are a couple things I did to calm myself down, stay present, keep my thoughts organized, and most importantly STAY POSITIVE.
Individuals living with MS face a lot of uncertainty. Coping with the unpredictability of MS can affect one’s quality of life. There may be times when you might be going through a relapse or flare up and you may experience MS-related symptoms. It is good to equip yourself to handle such emergencies. Here are some things to keep in mind that will help you to have control over such situations and put your mind at ease:
Emergency information: Have contact information of family, friends, and health care providers whom you can call in the event of an emergency. Keep a list of all medications with their dosages and a copy of your medical history in an accessible area in your home.
I remember it like it was yesterday. It was 11:27 AM on a Saturday morning. I asked my Husband if he wanted to have a bagel for breakfast. I opened my mouth, and the words would not come out as much as I tried. It was one big stutter. Oddly enough, I did not think much of it. Looking back now, that was a not-so-smart thing to do on my part. I went on with my day as per usual. I went to the grocery store, and when I went to the cashier to check out, I reached for my wallet, and I could not grip it. I was so embarrassed as change spilled all over the floor. I had experienced this before when I was first diagnosed, but it was on the right side of my body, not on the left. I managed to get out of the store and into my car loading up a small number of groceries that I had with just the right side of my body.
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.
It’s that time of the year… travel season! Traveling is an exciting way to broaden your horizons, whether it be a day trip, visiting friends, or exploring a new city. The thought of traveling while having MS may be intimidating, but with plenty of planning and preparation, a fun-filled vacation is at your fingers tips, in spite of MS.
An MS diagnosis does not have to stop you from seeing the destination you’ve always wanted to visit. There are many ways to make traveling with MS less stressful and more accessible. Before traveling, have a conversation with your doctor and talk about any health concerns and how to plan and renew any medications you need to take with you.
If you’re traveling by plane, notify the airline ahead of time if you require a wheelchair or any specific accommodation. The airline can arrange transportation throughout the airport to your gate and can assist with expedited access through security.
When it comes to hotel accommodations, research the hotel ahead of time to ensure they have handicap-accessible rooms and an elevator. Consider booking a room on the ground level if you have limited mobility. Depending on how your medication is stored, confirm with the hotel if the room has a refrigerator so you can store any medications that require refrigeration.
Take time to research and plan your daily activities beforehand. You want to hit all the top sites that interest you and make the most of your trip! Write down the places you would like to visit and ensure these locations are handicap accessible or have elevator access. It’s important to incorporate rest breaks into your agenda so you do not overexert yourself and become fatigued. Don’t forget to hydrate too! Especially in warmer climates, overheating, and dehydration can be risk factors. Pack water bottles, and cooling devices, such as a cooling vest, to prevent overheating.
So, take that vacation you’ve been dreaming of and make it a reality! Don’t let Multiple Sclerosis stop you from traveling. With planning and preparation, anything is possible. At the same time, know your limits and plan accordingly. Enjoy and HAVE FUN!
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!
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.
