Ask the Expert – Cognitive Issues

Posted on September 1, 2022 by MSAA

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Barry Hendin, MD

Question: What strategies can you recommend to help with cognitive issues?

Answer: First, let’s define cognition. Simply, it is all of the processes involved in learning, remembering, and expressing knowledge. It involves how we perceive, how we think, and how we convey knowledge verbally and nonverbally.

Although many people with MS, and at all stages of MS, express cognitive symptoms or problems, they are generally mild in nature. The most common complaints that I hear involve difficulties in memory, multitasking, learning new information, and processing speed.

Some cognitive changes may be due to MS itself. Often, however, the problems are due to, or are compounded by, other factors such as poor sleep, medication effect, pain, or depression. The first strategy, therefore, is to assess the contribution of mood, pain, medications, and sleep – and then treat them appropriately.

Continue reading →

Ask the Expert – Numbness and MS

Posted on June 29, 2022 by MSAA

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: Does new or increased numbness indicate a worsening of MS, and is this symptom typically permanent, or can it subside on its own?

Continue reading →

Stress Management with Chronic Illness

Posted on April 26, 2021 by MSAA

By Moyna John

It was November 2019, and my life was extremely challenging. I was struggling to find a balance between working and parenting my two-year-old toddler. I questioned myself at every turn. Being a first-time mother, I was very unsure of myself. Plus, I was still experiencing a case of post-partum depression. I was not handling all the stress well. Weeks later, I woke up with blurred vision in my right eye – this was the beginning of my symptoms. By the end of December 2019, I was diagnosed with multiple sclerosis (MS). I am sure that my high stress levels led to my initial MS symptoms.

Stress is something that everyone experiences. But managing a chronic illness can add even more. Unchecked stress can lead to various physical and mental symptoms. Some of these symptoms are chest pain, anxiety, headaches, depression, high blood pressure, and panic attacks. Stress management can provide healthier methods to cope with stress. Here are some stress management tips that I use.

Take care of your body.

You only get one body in this life; it’s essential to take care of it. Your body will give you signs when you are overly stressed. There are many different ways you can take care of yourself. Exercise is a great way to relax your mind and body—the endorphins from exercise can relieve stress and pain. I bought an exercise bike for my home. I try my best to exercise at least 30 minutes a day. Also, a well-balanced diet is another way to take care of yourself. Since my diagnosis of MS, I switched to a gluten-free diet. I have found that this diet has helped reduce my symptoms. Before making any changes, consult with your doctor first.

Relax your muscles.

I have noticed that my body gets taut when I am stressed. During overly stressed moments, I experience muscle spasms. One way I keep my muscles loose is through massages. COVID has prevented me from going to a spa to receive a massage. I purchased a massage gun, and it is a game-changer. It can be painful sometimes because of the intensity of the massage gun. Another quick way to relax your muscles is taking a hot shower/bath.

Grounding techniques.

According to Dr. Sarah Allen, “Grounding means to bring your focus to what is happening to you physically, either in your body or in your surroundings, instead of being trapped by the thoughts in your mind that are causing you to feel anxious.” My therapist recommended trying grounding techniques when I feel stressed or anxious. I have found these techniques to be very helpful for calming myself down. Here are the following techniques I do:

Deep breathing
Take a sip of cold water
Focus on listening to my surroundings
Recite lyrics to one of my favorite songs
Think about everything I am grateful for
Countdown backward from ten

Finding a hobby.

A hobby is an excellent way to occupy your mind. Find something that interests you or keeps your hands busy. My hobby is coloring; I have found a color by numbers app for my phone. Also, I purchased a paint by numbers kit that comes with an easel, paint, paintbrushes, and canvas. I think these kits are great because you get everything all in one; something to occupy the mind and hands and beautiful pictures that look lovely once completed.

Life is full of stressors, and chronic illness can only make it more challenging. Stress management strategies can help reduce stress-related symptoms and maintain a quality of life. Be mindful of taking care of your body through exercise and a well-balanced diet. Grounding techniques can be helpful for self-calming. Plus, finding a hobby can occupy your mind and keep you relaxed. Overall, stress can be detrimental to someone with a chronic illness. Remember to keep your health a priority!

*Moyna John is a multiple sclerosis advocate and freelance blogger. She is passionate about adding representation within the MS community, creating space for Black MS warriors, and empowering modern women to live a purposeful lifestyle outside of chronic illness. Visit her website or follow Moyna on Instagram.

You Are Not Alone – Anxiety and Depression in MS

Posted on October 28, 2020 by MSAA

By Doug Ankerman

It is not easy.

Of all symptoms one can experience with multiple sclerosis, I find anxiety and depression to be the most challenging.

For foot drop — I wear an AFO. Heat tolerance — I put on a cooling vest. Balance issues — I use a rollator. But for anxiety and depression, there is no aid. No clunky piece of equipment to help you through. Continue reading →

Slow Change and Sudden Shifts: Zooming Out to Gain Perspective

Posted on September 16, 2020 by MSAA

By Stacie Prada

Slow change can be really tough to handle. Its gradual and persistent nature can disguise itself as normal and stable. Only when it reaches a threshold or shifts might we feel the results.

I’ve been living with multiple sclerosis unknowingly and knowingly for almost thirty years, and in the last 12 years I’ve known lesions in my spinal cord are the root cause of pain and my body malfunctioning. I know my body is damaged from MS, I sense where it’s going, and yet Continue reading →

The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

Posted on December 29, 2014 by MultipleSclerosis.net

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
‪I sleep with ice packs all year long here in Michigan.
This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
My feet always feel cold even though they’re warm especially when I’m in bed .
I get really cold then I get really hot. It’s off and on.
I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not – is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

You Know You Have MS When…

Posted on July 25, 2014 by MultipleSclerosis.net

People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
The simple task of washing your hair is exhausting
Your kids think that all you do is sleep and that you’re sick all the time
You are so tired that you cry, and no amount of sleep helps
Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
You are tired or fatigued all the time, and you can’t find the energy to take a shower
Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
Feeling well-rested is a thing of the past
You must have a plan B, C, D, etc.
You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
You’re the only one in the room saying, ‘Is it hot in here?’
When 70 degrees feels like you’re standing inside of an oven
When you can’t do any outdoor activities due to the heat
When summer heat hits the triple digits, and you can barely breathe
Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

You can’t play with your kids or take a walk with your husband
You fall over when standing still
Your upper body starts to walk, and your legs don’t get the memo in time
You don’t even realize it when your legs go out from under you
You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
You just tip over when standing still on level ground
When you wake up one morning, and you’re paralyzed on one side of your whole body
You keep tripping up over nothing
You are always dropping things
You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
Your hands are asleep and they don’t wake up
You are eating dinner and your arm suddenly jerks and your food goes flying across the table
You walk like you’ve had a few cocktails, but you haven’t had a sip
You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
You have to stop mid sentence because you’ve lost your train of thought
You take the dog for a walk around the block,and your legs feel like they are encased in cement
You walk like you are dancing to Michael Jackson’s “Thriller”
When your knees are locked as though there’s a magnet holding them together
When you go from 0 to pee in two seconds flat
You have to hold on to walls because you lack balance
You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
You can’t stand without assistance
Your head goes one way and your legs another
You have to look at your hand and tell it to move
When you can’t pass a field sobriety test while sober
Despite only being 41, you walk like your 76 year-old mother
You have to lean your elbows against the shower wall to wash your hair

Your mind isn’t as sharp as it used to be

You lose your train of thought while mid-sentence
You walk into a room and forgot why you went in there in the first place
You have the hardest time trying to say what you want to say, and your words come out making no sense
You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
What was the question?

Pain and numbness become a part of everyday life

Your feet feel like they are on fire or you have frostbite
You are numb and tingly and have burning sensations all over
You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
You feel like you are being stabbed, and you have a tingling feeling all over your body
You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
You “feel” noises that go straight to the bone with subsequent weird pain!
Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

When everyone assumes you are normal and they say, ‘Let’s go – get with it’
Your friends and family think you are fine because you look the same, so they think you are just being anti-social
You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

April Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on April 4, 2014 by John MSAA

MSAA is very proud to present our 2014 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

April Artist of the Month:
Carolyn Bowlus – Los Osos, CA

“I grew up in a family of amateur artists, so it seemed natural to try my hand in the art world. I dabbled in acrylics and watercolors with a few art classes along the way.

When I was diagnosed with MS in 2000, I had visual and migraine issues which now come and go. When I am in remission I go back to my art hobbies with great enthusiasm. It is something I have to look forward to during the “down” times.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Carolyn Bowlus and spread awareness of MS and MSAA.

February Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on February 7, 2014 by John MSAA

MSAA is very proud to present our Art Showcase – celebrating the work of artists affected by MS.

February 2014 Artist of the Month:
Lucinda Mierek – Anderson, SC

“My art has changed because of my fatigue and loss of concentration. My images used to be tight and are now loose. The content was edgier and is now more mainstream. However, my color use is getting better possibly because I’m losing my vision and am trying to compensate. I need more energy to do my art and haven’t figured out how to get it.

Even with my problems I feel fortunate. I still walk, drive, and tend to my yard.

My daughter and I still enjoy our time together. She pushes me to do more art. She seems to be my biggest fan!

‘Pretty Petals and Peaches’ is acrylic on matte board. It is very loose in comparison to the detailed older work of mine. I like the color usage of my “MS era.” I have learned to take life a little less intensely and use color more intensely. My work has changed for the better.”

MSAA’s Next Art Showcase for 2014

Thank you to all of the artists who were part of last year’s Art Showcase for artists with multiple sclerosis. The wonderful artwork and personal stories have been inspirational to many who have visited our online gallery and who have sent and received online art cards, celebrating the lives and talents of people living with MS.

MSAA will soon debut the 2014 Art Showcase in March as part of MS Awareness Month. So, get ready for some new artwork and stories to enjoy! As before, each month we will share with you an Artist of the Month with a new online card that you can send to friends and family to spread awareness of MS, while showcasing the wonderful talents displayed by artists with MS.

You still have time for one more look at last year’s collection! Then, get ready to enjoy the many new works to be featured in MSAA’s 2014 Art Showcase.

Check out the complete MSAA Art Showcase online gallery of artists with MS.

How do you treat your MS?

Posted on January 24, 2014 by MultipleSclerosis.net

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease. Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by multiple sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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Featuring Barry A. Hendin, MDMSAA’s Chief Medical Officer

By Moyna John

Take care of your body.

Relax your muscles.

Grounding techniques.

Finding a hobby.

By Doug Ankerman

By Stacie Prada

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer