MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. We share these artists’ inspiring stories and beautiful artwork with you each month as our Artist of the Month. We celebrate AnnaMarie Prono as the October Artist of the Month this month. AnnaMarie is from Forest Hills, NY.Continue reading
By Stacie Prada
When the kids return to school, traffic patterns change and I may follow the school bus on my morning commute to work. There are fewer tourists in my town and fewer colleagues away on vacation. Stores and ad campaigns feature school supplies and products useful for students going back to school. “Back to School” season is a terrific annual reminder that learning doesn’t end after finishing school. I consider how much lifelong learning I’ve done and hope to attempt, the possibilities grow, and I’m motivated to plan more.Continue reading
Emergencies occur daily, and they can range from mild inconvenience to life-shattering events. There is tons of information available for being prepared for emergencies. Lists of what to include in emergency kits are thorough and excellent for helping each of us have what we need in case of emergency. Pages dedicated to people who are medically vulnerable and disabled are wonderful for listing what to consider for ourselves and those we care for.Continue reading
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.Continue reading
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 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.
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!