During MS Awareness Month, MSAA has been releasing a variety of programs and resources for the MS community. This year, we focused on the theme “Life with MS: Different Stages of the Journey” with programs related to: Pediatric MS, Young Adults with MS, Family Planning and MS, and Aging Well with MS. These topics explore the journey of the MS community and their life with MS from diagnosis and throughout their journeys.
For most, the new year comes with excitement of what’s to come. For those of us who battle MS, the new year comes with its fair share of worries, challenges and anxious thoughts of what the new year may bring. We reflect on our past year, perhaps your MS got worse, and you’re worried it won’t get any better, or maybe you are finally considered “stable”, and you’re concerned it is too good to be true and you will get worse. However you choose to look at the new year, we all worry one way or another. I am here to tell you that you are not alone.
Continue readingThe holidays can be a stressful time of year for anyone, but for those living with MS, it can be even more stressful. Things that may seem like a simple and even fun task, like baking, may be a daunting and time-consuming one for us with MS. When you’re dealing with a chronic illness, you must learn to take it easy on yourself. Give yourself some grace, even during the holiday season.
I’ve made some changes in my life to lessen my holiday anxiety and lighten the load a bit. For example, not putting so much pressure on myself to make dozens of homemade cookies or desserts. I use easy recipes that do not involve a lot, like this one I share with you below. It is one of my favorites and a crowd pleaser to boot! Spoiler alert: no one is going to care, or even know you made a boxed cake, I promise. 😉
Continue readingBy Emily Gordon
I remember the day like it was yesterday. September 24, 2012. I remember the smell of the room. I remember what the ring of the phone sounded like when I got the call in the MRI waiting room. I was 22 years old. I had just graduated from college. I was working at an NBC affiliate news station, living out my dream of being a sports reporter. It was all happening for me, or so I thought.
It turns out that a lot was happening in my brain and spine as well. It was a crisp fall day, and my favorite day of the week: Football Friday! I had been assigned to cover three high school football games that night. It was my very first game of the season. I was confident in my scripts; live camera hit and tag out. The live camera hit came and I looked up at the scoreboard to recite the score, then turned back to the camera and forgot what I had just looked at, a second ago. Luckily, I recovered from that fumble (ha) and recovered fine throughout the rest of the night. However, that slight hiccup had my mind racing. Why did that happen? Is this normal? Am I sick? The intrusive thoughts would not stop coming.
Continue readingBy Emily Gordon
The change of seasons is exciting for most, but for those living with MS, it can be a daunting time. The weather is getting chillier, which means for some of us, our spasticity is kicking in. The extreme fatigue can reach an all-time high, and cognition can begin to suffer.
The colder months ahead can cause a bit of stress regarding the uncertainty of your health. Tremors, numbness, tingling, trouble with balance, issues with cognition… OH BOY! It can be nerve-racking to have to think about all these things. I have picked up a few things throughout my 10-year MS journey that have helped me manage these symptoms.
You could find it more difficult in the coming months to get moving. Daily movement is not only good for your body, but it is also great for your mind. Take time to enjoy the season! Get outside for a walk if you are able and take in the beauty of autumn and the colorful foliage. Or stay indoors and do some stretching and/or yoga. An MS diagnosis does not mean you need to stop living. It is a time to START living. Enjoy the little things in life!
Every morning I meditate. I take 10 minutes before everyone in my house wakes up to just BE. Be still, be present with my thoughts, set my intention for the day, and be mindful of my emotions. Living with a chronic illness – can bring rough days, be mindful of these rough days and feel what you need to feel, whether it be frustration or sadness.
It is so easy to fall into a rut. I have used the “I’m too tired” statement one too many times. The truth is yes, I was tired, however, I have learned in this journey that being “too tired” and not doing anything will only make you more tired. Fatigue is unfortunately a big part of battling MS. I know my limits and sometimes I do have to say, “I’m too tired” and rest. But on the days my body and mind can afford to get ready, put some makeup on, get dressed and have a wonderful time are always the times I am glad I pushed through my fatigue.
Write down when you are experiencing a new symptom and talk to your doctor about it immediately. Be conscious of even the slightest change in speech, mobility, or balance. In 2020, my infusion center had to shut down due to the pandemic. I was behind on my disease-modifying treatment by 2 months. I woke up one morning and was unable to swallow, move the left side of my body, or speak. I spent two months in the hospital and 12 weeks (about 3 months) in rehab teaching myself how to walk, talk and write again. MS is completely unpredictable and changes in your health can happen overnight. Take it from me. Be your own patient advocate, since after all, no one knows you better than well… you!
MS has been a part of my life for a decade. It has certainly never been easy. This disease is extremely unpredictable. I will leave you with a saying I use when I am having a rough day.
“It is not about the cards you’re dealt, but it’s about how you play them.”
PLAY WISELY.
By Joe Sperlunto, Donor Experience Manager
The spooky season of goblins, ghosts, and ghouls is upon us, and Halloween lovers everywhere are stocking up on candy, making costumes, and decorating their homes with cobwebs, jack-o-lanterns, and giant skeletons (ok – that last one is just my colleague Jen here at MSAA). Such a fun time of year brings family and friends together over all sorts of activities and events – all great opportunities to hold a Do-It-Yourself DIY fundraiser for MSAA!
MSAA’s DIY fundraising platform helps you turn any Halloween event into a (fun!)d drive for MSAA’s free programs and services. When you register your fundraising event on our platform, you can create a customizable and fully shareable fundraising page to promote your event and collect donations. Creating and sharing your page will be the easiest part of planning your DIY fundraiser – the real fun is deciding what kind of event you want to do! For inspiration, check out some of our ideas below:
Everyone loves a Halloween party at the end of October – and you are already planning one! If you are having a Halloween party, you can encourage guests to donate to MSAA. We would be more than happy to provide MSAA-branded swag and literature for your party, and you can even incorporate some of our other ideas below.
Trunk-or-treating has become widely popular in communities looking for a safe alternative to trick or treating. Partner with a local community center, park, or business with an available parking lot, and get a group of friends together to decorate their cars and fill their trunks with candy. Parents who bring their children can donate to MSAA, while you provide a safe and fun activity for kids in your community.
A costume contest can be a wonderful time on its own, or a fun added element to any Halloween-themed event. People spend hours creating costumes for Halloween – give them an opportunity to show off! You can set a minimum donation to enter the contest. Assemble a panel of judges and incentivize your contest with fun spooky (or sweet) prizes!
The return of chilly weather in the Fall sends many of us to our pantries and ovens. If you are an experienced baker who likes teaching their craft or hobby to others, why not host a Halloween baking class in your home?
Walks and runs are a classic DIY fundraiser. Make it a costume run, and you have a Halloween 5K! Our DIY platform makes it easy to create fundraising teams and pages for your runners – it is one of the most popular DIY fundraising events – and we have lots of run/walk related swag we can share for your event.
Organize a house decorating contest in your community. Like a costume contest, you will need to assemble a panel of judges and ask participants to donate to MSAA to enter the contest. As a bonus, participants could include a haunted house tour element with a suggested donation to MSAA!
While the month of October is Halloween season, the needs of the MS community persist all year. MSAA is there for people with MS, their families, and care partners with free programs and services, including cooling and medical equipment, MRI funding, a toll-free helpline, and award-winning online tools and resources. If you have ever thought of hosting a DIY fundraiser for MSAA, Halloween is a terrific opportunity to do. For resources or more ideas for your Halloween event, contact Joe Sperlunto, Manager of Donor Experience, at jsperlunto@mymsaa.org – I would love to help you plan a fun and spooky Halloween event to support MSAA’s free programs and services!
By Emily Gordon
Being a parent with or without a chronic illness is challenging. When you add in the constant worrying about staying healthy for your family, it can be even more challenging. As a new mother to a little girl, I find myself wondering how to keep everything in order. Laundry piles up, bottles need to be washed, dinner needs to be made, and sometimes I feel as though there is just not enough time in the day to get it all done.
I am not an expert on time management, but I have found a couple things that tend to keep me organized, less stressed and keep me on track with running my family’s household.
