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.Continue reading
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.
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!
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!
It is that time of the year when people are enjoying the summer by traveling and exploring different destinations. Fatigue, bathroom issues, and walking difficulties are a few of the many challenges individuals with MS tend to encounter while traveling. Having MS should not deter you from traveling, it just means that your travel might need a little more detailed preparation and planning. It is important to note that individuals with disabilities have rights that are protected by the Americans with Disabilities Act (ADA) which prohibits discrimination and makes sure that accommodations are provided to such individuals whenever needed. Here are some tips to keep in mind that will make your travel experience relaxing and hassle-free:
Carry necessary medical paperwork: It is important to have a doctor’s note that details your MS diagnosis. Get all your prescriptions filled in by the neurologist. Carry medicines in daily pillboxes. Also, keep the contact information for your doctors saved on your phone in case you need to reach them in an event of an emergency.
Cooling products: Cooling vests, hats, pillows, and scarves are great to carry especially while traveling to places where the weather can fail to cooperate.
Rent mobility equipment: Mobility equipment like rollators, scooters, wheelchairs, walking aids, etc. can easily be rented. Renting equipment will avoid the hassle of carrying heavy gear. In many states, you can also have mobility equipment delivered right to your doorstep.
Air travel: While traveling by air, ask for wheelchair assistance while boarding and deplaning. Take advantage of early boarding procedures and seating accommodations. Use elevators and travelators (moving walkways) in the airports whenever possible.
Go with a travel buddy: Having a reliable travel partner can make your travel stress free. It will give you peace of mind just to know there is someone to give you a helping hand whenever you need one.
Seize every opportunity that comes your way and do not let MS stop you from experiencing the joy of travelling. There will always be some unexpected hiccups along the way but planning your travel ahead and knowing your rights will ensure that you have an unforgettable and memorable time.
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 reading
Are you planning a trip soon? Sure, getting to the destination is beautiful and all but what about all the planning that goes into the trip? Between the research, packing, reservations, and cost, traveling can be exhausting. Nothing beats an amazing vacation, but how do we make sure we are prepared for it all?
If you are anything like me, you will most definitely forget to pack something (and end up looking like a tornado tossing around the luggage to find it). Traveling with MS can be easy when you are prepared and have a contingency plan.
Here are some tips that can make your trip run as smoothly as possible.
- Depending on your destination and needs, it may be a great idea to request a doctor’s note listing your medications and any specific medical needs you need accommodations for.
- Bring the necessary storage devices, such as a cooler for injections, a needle clipping device, and storage must-haves.
- Consider your medication dates if you take a DMT. For example, work around your infusion date.
- Call the hotel in advance to verify the hotel has a refrigerator in the hotel room, or request a refrigerator for your room if you have medication that requires refrigeration.
- Bring a list of your providers’ contact information just in case.
- Bring extra medication in case you accidentally misplace it or damage it.
- If you are traveling by air, you may contact the Transportation Security Administration (TSA) for additional information and to familiarize yourself with the Air Carrier Access Act (ACAA) that protects against discrimination.
- Find MS support when traveling abroad by visiting the Multiple Sclerosis International Federation directory.
Knowing what to expect when traveling can ease your worries. Multiple Sclerosis doesn’t have to weigh you down. Don’t let anything stop you from taking that dream vacation you have always wanted. Plan, prepare, and enjoy the trip!
Ahh summer-time. The (arguably) enjoyable weather brings about endless possibilities for outings, adventure, and quality time with friends and family. For many, the summer months indicate vacation and travel arrangements to sunny, tropical destinations. As appealing and worthwhile as a good getaway may be, these plans can also lead to uninterrupted thoughts about what to pack, what needs to get done, what to budget, feelings of guilt for leaving behind responsibilities, and an endless list of anticipated items. However, what many of us don’t think of packing is our well-being. Ensuring you are feeling your best self and are preparing in a way that will care for your mental health is just as essential as any other travel equipment.Continue reading
Summertime is here and that means backyard barbecues, lounging on the beach or by the pool, outdoor fun, and leisurely walks. For many folks, these activities are enjoyable activities in the summer months. However, if you have Multiple Sclerosis, these activities on hot summer days can be challenging.
Exposure to warm temperatures can cause an exacerbation of symptoms for heat-sensitive individuals. It may feel like your world narrows during the summer season, but there are many ways to stay cool and reclaim the carefree feeling of the season.
Bring the beach to you! Sitting on the beach in the blazing sun may be the last place you want to be if you have heat sensitivity. So how about getting the “beach vibe” while still being cool at home? You can create the full scene right in the living room of your home. Grab a beach chair, turn on some feel-good music, and sit back and relax in the AC. Nowadays, there are a plethora of candles that have scents that smell just like the beach. They are so realistic, you’d swear you’re smelling the same thing!
Cook-in instead of a cookout! Bring your friends and the barbecue to the comfort (and coolness) of your home. Chop up some bright, fresh fruit and mix up some frozen yummy drinks. Order takeout instead of cooking by the stovetop, or perhaps one of your friends is a grill master and enjoys grilling up some goodies.
Enjoy the cool, late summer nights! One of the best parts of summer is the longer days and the cooler evenings. Take advantage of the breezy summer nights and sit outside. Watch nearby fireworks, or simply just sit and listen to the sounds of summer.
The summer months can be a challenging time for heat-sensitive individuals. The key is to plan ahead and do what makes you feel the most comfortable. Get creative and make your summer experience your own. Make this your best summer yet!
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 reading