Living with a chronic illness like multiple sclerosis (MS) can feel isolating at times. While we can be our own support system through self-love and self-care, not everyone has strong family ties that bring support and comfort. Many of us may not have a built-in support system, and that’s okay. The good news is that building one is entirely possible. Know that you don’t have to do this alone.
Continue readingBy Stacie Prada
Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner.
Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps?
Continue readingBy Dr Eva Jackson
Let us take a moment and go back into time. Remember your life before multiple sclerosis. Now stop and take a big breath as you let your memories unfold. You may visualize the days of going to a theme park and riding all the rides, or running on a sandy beach, just having fun. The days before watching your steps to ensure that there were not any barriers that would create a fall hazard or looking at the handicap parking spaces at your local grocery store to ensure that you did not have far to walk.
Now smile, because if you can visualize this, just know that you are not alone. Most of us are very independent people. People who never relied on others when making plans to go places. Independent individuals who very seldom had to go to the doctor regularly or spent days researching healthcare plans because this work was often done by your jobs.
As you think about those days, I will tell you a little secret. I have not been to a Christmas parade in over 5 years. During my last parade, I experienced several falls and sustained a shoulder fracture the next year. The risk is not worth the fulfillment of watching a parade in person.
Now MS has created a need in you to find safety nets in your home, communities, and healthcare. A safety net that you may have never thought you would need. A safety net could be financial, healthcare, family, or community support.
Let’s look at different safety nets and how they may vary for you.
Continue readingLife with MS can be full of ups and downs. Some days you feel strong and independent – others, you may need a little extra support. That’s completely normal. No one is meant to carry everything alone – MS or not.
Having a reliable support system – a personal safety net – can make daily challenges more manageable and help you feel more grounded, emotionally and physically. Whether you’re newly diagnosed or years into your MS journey, it’s never too late to build or strengthen that circle of support.
Continue readingBy Samuel Fitch
When you think of a safety net, what comes to mind? Is it a circus act—a high-flying trapeze artist soaring through the air or someone being launched from a cannon, hoping to land softly?
The truth is, safety nets come in many forms. At their core, they are tools that provide security, comfort, and confidence.
Continue reading
Living with multiple sclerosis can bring about a number of uncertainties – from navigating symptom and treatment options to dealing with emotional and lifestyle changes. While every journey with MS is unique, one thing is universal: no one should have to face MS alone. This is why the Multiple Sclerosis Association of America (MSAA) created My MSAA Community.
Continue readingFeaturing Barry A. Hendin, MD
MSAA’s Chief Medical Officer
Question: What are the symptoms of heat sensitivity in MS, and how is it best treated?
Answer: Heat sensitivity, also known as Uhthoff’s Phenomenon, describes an increase in MS symptomatology caused by overheating. This could be due to external influences, when a person with multiple sclerosis is in an excessively hot environment. Alternatively, this can relate to an internal increase in body temperature due to exercise or infection with fever. Sometimes, of course, it’s a combination of the two when people are exercising in an overheated environment.
Continue readingBy Stacie Prada
Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance. Frustration grows when we meet opposition and live with pain and unmet needs.
Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.
Continue reading
I’ve realized that learning to ask for what I need is an art form. While this may come naturally to some, others may find it difficult to put into words. Advocating for ourselves takes self-awareness, clarity, and practice — but the good news is that these skills can be learned and strengthened over time.
At our core, humans are wired for connection and belonging. Advocating for ourselves and asking for what we need can feel risky because it carries the fear of being rejected, dismissed, or seen as “too much,” “too needy,” or “difficult.” And yet, we all have an innate need to feel heard, validated, and understood.
Continue readingThere are a lot of uncertainties one must face while battling MS, and its symptoms vary widely among individuals. For newly diagnosed individuals, this can be a scary and unsettling journey without knowing what to expect down the road. Below are a few things you can suggest to someone who has been recently diagnosed with MS:
Continue reading