Keep Moving

By: Stacie Prada

If you can’t run, then walk, if you can’t walk then crawl, stretch, or flex. Just keep moving.

Living an active lifestyle can be a challenge in the best of circumstances. Add living with multiple sclerosis symptoms such as fatigue, foot drop, and heat sensitivity, and it’s generally frustrating and takes more effort to stay motivated. Factor in adverse weather conditions, and it’s a huge undertaking to override the urge to be sedentary.

With MS, it’s common for symptoms to act up when the body temperature increases. That’s why hot weather is one of the many obstacles to staying active. When I was still learning how MS affected my body, it was scary when a jog led to body numbness from the neck down and an inability to control my feet reliably. Over time, I learned to differentiate between heat and exertion-induced pseudo-exacerbations that would subside within an hour or so after I cooled down and disease-progressing exacerbations that last much longer.

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Remaining Active in the Summer Heat

Exercise and staying active has so many benefits such as improved mental health and wellbeing. However, for many, the extreme summer weather we have been experiencing can make it hard to stay active. Heat sensitivity is a common problem among people with multiple sclerosis, often aggravating common symptoms.

Here are helpful tips on ways to keep your body cool and remain active this summer!

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To Drive or Not to Drive With MS

Living with multiple sclerosis (MS) changes many things in life. The impact of symptoms on the body makes certain tasks more difficult. For example, driving becomes more challenging as MS progresses. 

We recently asked the MultipleSclerosis.net community, “Has MS altered your driving habits?”

There were many insightful replies about how MS impacts whether and how a person continues driving. Some respondents still drive, and others do not. Here is some of the community’s perspective in their own words.

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Ask the Expert: Urinary Tract Infections

Featuring Barry A. Hendin, MD 

MSAA’s Chief Medical Officer  

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: Are urinary tract infections (UTIs) more common in MS, and what are the symptoms and treatments?

Answer: Yes, urinary tract infections are more common in people with MS. Multiple sclerosis is often associated with bladder dysfunction and bladder dysfunction is often associated with urinary tract infections. The most common bladder problem associated with infections is urinary retention, which is incomplete emptying of the bladder. This creates an ideal incubator for bacteria to grow. Patients who catheterize may also be at an increased risk, particularly if not careful with their bladder technique.

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Advice for Friends and Family Supporting Someone Receiving an MS Diagnosis

When a loved one receives a diagnosis of multiple sclerosis (MS), learning how to support them is vital. To learn what type of support people living with MS most value, we asked the MultipleSclerosis.net community:

“What advice would you give to friends and family who want to support someone receiving an MS diagnosis?”

The community shared lots of helpful insights!

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Infused

By Chernise Joseph

I wanted to do some corny joke like, ‘Yep, that’s me! I bet you’re wondering how I got here,” for the photo from my infusion on Friday, but it seemed a little too double-edged… badumtiss. No? That’s alright, infusion jokes are never funny unless they’re mixed up juuuust right. Ha, okay, in all seriousness – my multiple sclerosis said hello to me on Friday. Well, I suppose it always says hello, but it likes to do it in unique ways sometimes like in the form of an 8-hour infusion. Whew! You read that right. Eight hours of beeping, vitals, tubing, fluorescent lights, too-cold rooms…

I used to hate infusion days. They were long, yes, but they were mostly scary to me. I didn’t know what to expect, nor did I really understand just how important what I was doing was. Of course, I had done as much research as a 23-year-old with a humanities degree could do, but my brain still felt frazzled. What if I spontaneously combust? What if I grow an extra head? What if I’m patient zero for the zombie apocalypse? It was all I could think of going up to the infusion, during it, and even after for a while.

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Ask the Expert – Mobility

Featuring Barry A. Hendin, MD 

MSAA’s Chief Medical Officer  

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: What types of exercises are best to help with mobility and walking issues in MS?  

Answer: A number of different exercises can improve and maintain walking and mobility skills along with safety. Many of these exercises can be learned through formal physical therapy or through online programs. They can include exercises focused on range of motion and flexibility. Alternatively, they may focus on strengthening through resistance training. Some exercises are directed toward general cardiovascular health and others focus primarily on balance. Although any of these forms of exercise may be useful, specific exercise for an individual should focus on an individual’s exact needs. 

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MS is Like a Fingerprint

Multiple Sclerosis (MS) is a complex and often misunderstood diagnosis that affects millions of people worldwide. Despite its prevalence, there are many misconceptions surrounding MS that can impact the lives of those living with the condition. Although I personally do not have MS, I’ve worked closely with individuals over the years who live with MS, and I’ve learned and observed firsthand the challenges they face and how unpredictable the disease can be. A saying I’ve heard that stuck with me is, “Multiple sclerosis is like a fingerprint”. This saying speaks to the fact that every person’s journey with MS is unique and looks different for every person. There are so many misconceptions surrounding MS and I’d like to dive into what I wish others knew about the disease with the hope of fostering understanding, compassion, and support for those navigating life with MS.

  1. It’s Not Just Physical: One of the most common misconceptions about MS is that it only affects physical health. While MS does manifest with physical symptoms such as tremors, weakness, and mobility issues, it also impacts cognitive function and mental health. Symptoms can include brain fog, memory changes, and mood fluctuations and these aspects of MS are less visible and frequently overlooked.
  2. Unpredictability: Living with MS means living with uncertainty. The course of the disease is unique from person to person, and symptoms can fluctuate unpredictably. This uncertainty can pose many challenges in day-to-day life. In what feels manageable one day could become overwhelming the next.
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We Are More Than Meets the Eye

Multiple sclerosis is often a misunderstood diagnosis. Many people are unaware of the complexities of the disease, and those with an MS diagnosis frequently become advocates, whether they realize it or not. The resilience of those with an MS diagnosis never ceases to amaze me. Not only do they have to learn about the disease and all its intricacies, but they often must educate those around them about it as well. I wish people knew that those with an MS diagnosis are truly courageous, and every journey is unique.

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Prioritizing Self-Care

By Stacie Prada

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the season’s demands. I know I need to be even more attentive to my health than usual to best navigate the next couple of months. Yet most years I put commitments and other people ahead of my needs. It leads to overwhelm and exacerbates my MS fatigue.

Self-care is an individual decision and responsibility, and it’s within our control.  So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money, and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line?

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