The New Initiative About MS and Brain Health

This blog post is Sponsored by Celgene. All opinions and thoughts are my own.

 

I’m excited to tell you about my recent activities. Not only does it have to do with multiple sclerosis but also about a new perspective that I believe is important for the MS community. I’ll begin by saying it centers on brain health, MS, and the symbiotic relationship between the two.

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After thirty-three years of living with this disease I was thrilled to see that a new perspective about MS is finally here, namely, the MS MindShift. Believe me when I tell you that if I didn’t believe in the message of MS MindShift I wouldn’t invest my time and energy in it.

This new perspective focuses on the critical role the brain plays in multiple sclerosis and how we can create better brain health for ourselves by keeping our brains in good shape.

How can we do that? Read on.

Between living with MS for such a long time and celebrating my 60th birthday this year, I became a willing student by inhaling new information on how to maintain my brain health.  As I read through the MS MindShift website I felt I was following my New Year’s Resolution of self-care and became excited to learn a new thing or two (or three, or four…)

Listen to this! Did you know that MS is more than a white matter disease?  Or that a decrease in grey matter affects MS more than previously thought? Did you also know the volume of grey matter can help predict long-term disability? Neither did I! Check out the website to learn some fascinating and useful information.

Now back to my activities.

I recently, along with my MS colleague and buddy Caroline Craven (The Girl with MS), were fortunate to spend two glorious days being interviewed in Liberty State Park (Jersey City, NJ) and Manhattan about the new MS MindShift initiative.

We answered questions (along with Dr. Barry Singer) about why we think it’s important to talk about the critical role the brain plays in MS, what lifestyle changes we can make to achieve optimal brain health, and we shared our personal MS journeys with many people from the media and also with interested visitors to the Liberty State Park event.

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Staying socially active is one of the ways to keep your brain healthy, so I guess when Caroline and I hugged our brains were very happy!

I felt like a rock star with paparazzi (translate: media outlets) snapping photos, videotaping, and Instagram storying (is that a phrase?) me. I was asked questions about the areas I spoke about above. It was so gratifying to see such a collective interest in learning more about MS and how the disease manifests itself in our bodies. After living in what I refer to as the “Dark Ages of MS” when there were no approved MS medications, no internet and no patient voice speaking up for our community it was music to my ears  to have such a deep interest about MS and the MS MindShift.

As you look at the photos in this post, the happiness I’m feeling is palpable.

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What I learned from the website translated into my new self-care program for better brain health. It includes the following that will help me do that:  

There’s a new kid in town and its name is the MS MindShift. Do yourself a favor and check out their website. I know you’ll be glad you did.

The MS MindShift

 

How to Improve Your Cognition and Have Fun at the Same Time (Giveaway)

How do you know if the cognitive issues you're experiencing are a sign of aging or are the result of an illness? Do any of these scenarios sound familiar?

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According to the Cleveland Clinic:

"Almost all of us become aware of changes in memory and cognition (thinking) as we get older. We begin to have difficulty recalling names of people and places, notice that our mental processing has slowed, and that learning is more difficult. We find that certain functions (for example, eye-hand coordination) are also slower."

According to The National Multiple Sclerosis Society (NMSS) more than half of those living with MS develop problems with cognition, and in some cases it’s someone's first symptom. Here are a few that are most likely to be affected:

As a writer and someone in her late fifties I look for ways to keep my cognitive skills intact.

I'm a voracious reader, and in my work I stretch my brain power by researching unfamiliar medical terms. I play several games of Words with Friends, but I'd like to find some new brain games.

That’s why I was thrilled to hear from the people at Posit Science who directed my attention to a recent study by researchers at NYU’s Langone Medical Center about BrainHQ, an online brain-training game that was created to test memory, focus, attention and much more.  

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Photo Credit: BrainHQ

The study consisted of 135 patients who were assigned randomly to either brain-training or computer games and trained for an hour a day, five days a week for 12 weeks. While both groups were found to improve in overall cognitive measure, the brain-training group had nearly three times the gain as the computer games group.

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Photo Credit: BrainHQ

The study went a step further by asking patients to self-assess improvement in cognition performance. The brain-training group reported 56.7 percent improvement compared to the computer games group’s 31 percent.  

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Photo Credit: BrainHQ

The study was published in Plos One Neurology in an article titled “Cognitive Function in Multiple Sclerosis Improves with Telerehabilitation: Results from a Randomized Controlled Trial.” It is believed to be the largest study to measure the impact of brain training on cognition in MS patients.

“This trial demonstrates that computer-based cognitive remediation accessed from home can be effective in improving cognitive symptoms for individuals with MS,” said Leigh Charvet, PhD, the study’s lead author.

“The remote delivery of an at-home test and findings of cognitive benefit may also be generalizable to other neurological conditions in which cognitive function is compromised.”

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OMG! That's such great news!

I spoke to Henry Mahncke, PhD, and CEO of Posit Science, whose excitement about BrainHQ was evident over the telephone. He was proud that BrainHQ found a way to increase processing skills and memory by taking science out of the lab and into the homes of patients.

Dr. Mahncke added that he hopes there’ll be a time when doctors and nurses point their patients to BrainHQ as a way to improve brain function. This recent study has brought his dream closer to fruition.

“We are encouraged by this publication of results by independent researchers in yet another clinical population,” said Mahncke. “With the assistance of other researchers and investors, these results will play a part in our plan to bring digital therapies to market after obtaining appropriate regulatory approvals.”

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Photo Credit: BrainHQ

You can learn more about BrainHQ here. Their games are easy to manipulate and fun to play. Giving your brain a regular workout is a gift you give yourself. So keep your brain active and give it a try!

I’m thrilled to offer 5 readers full access to BrainHQ for one year! To enter leave a comment below. Contest ends at midnight on August 1st. Winners will be announced on Wednesday, August 2.

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I'm thrilled to be nominated for a Patient Leader Award from WEGO Health. Please take a moment to ENDORSE me, then scroll down the page and click the ENDORSE button. Winning would help me spread the work I do for the MS community to a wider audience. Thank you!!

 

(NOTE: A portion of this blog post was previously published in my column, Making a Difference, at Multiple Sclerosis News Today.)

Four Simple Ways You Can Create Better Brain Health

In 1981 I was in a serious car accident that I don’t remember. After an oncoming car crashed head-on into ours I passed out. When I finally woke up I was lying on a stretcher with my girlfriend hovering over me. Her facial expression was a mixture of I’m so happy you’re not dead and don’t worry, everything will be all right.  

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The deep gash in my forehead required sixteen stitches, and my parents admitted me to our local hospital for the doctors to run tests. Although I had a serious concussion I was released a few days later after the test results were negative.

Six years later I was diagnosed with Multiple Sclerosis.

Multiple Sclerosis is a disease of the central nervous system that disrupts the flow of information between the brain and body. One of those disruptions can be a change in cognition; approximately half of people diagnosed with MS develop problems with it. Memory, attention and concentration, information processing, verbal fluency, visiospatial functions (visual perception) or executive functioning (prioritizing and planning) can all be affected.

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After my diagnosis I got busy with life. Marriage, motherhood, writing and volunteering were my priorities. I didn’t have time to think about what was going on in my brain. Of course there were obvious physical ailments manifesting from my disease. But after awhile I didn’t think about them; they simply became part of who I was.

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According to The National Institutes of Health:

“Aging causes changes to the brain size, vasculature, and cognition. The brain shrinks with increasing age and there are changes at all levels.” 

The website Psychology Today goes a step further by saying:

“We now know brain function need not decline with age, at least for people who stay healthy and mentally active. By the way, research shows that a lifetime of vigorous learning helps prevent or delay Alzheimer’s disease.”

Concussion. Disease. Aging.

I guess I’m living with the trifecta of possibilities why I sometimes can’t remember a name, what I ate for dinner last night or what I was just about to say. My brain has been shaken and stirred, and is aging every second of every hour of every day.

Enter Ruth Curran, a blogging friend I fell in love with after meeting two years ago. Ruth has been my guru for inspiration and information on brain health. She's an expert on the subject as an author, speaker, entrepreneur and brain game creator.

She’s also a brain injury survivor.

Ruth has more grit than most people I know. After a serious car accident she spent 18 months struggling to complete sentences and thoughts. After feeling frustrated she decided that she needed to do something to regain her quality of life. So she went back to school to get her Master’s degree in cognitive psychology!

Ruth discovered through her own personal experience (plus she struggled while both of her parents suffered from cognitive decline) that cognitive puzzles can help people regain some cognitive control.

That catapulted her to create her incredible website Cranium Crunches.

After getting to know Ruth's story and her work I realized that some of my cognitive difficulties may be a result of my concussion. (NOTE: Today a concussion is defined as a traumatic brain injury.) I doubt I’ll ever know if my brain blips are from age, disease or injury.

We all want to avoid losing brain power as we age. What's the solution for staying brain healthy?

Here are four ways I’m waging a personal war against brain dysfunction. I want to age gracefully and keep my brain cells as healthy as possible. Are you waging your own war?

Games, puzzles and teasers: I enjoy spending time on Ruth’s website, Cranium Crunches. It’s a fun and easy way to keep your brain in shape with amusing games and teasers that are so pleasurable. And while you’re there tool around the site to learn other ways you can keep your brain healthy.

Learn a new skill: Stretching your brain means learning something new, something that’s unlike anything you’ve learned before. My latest addiction is Periscope, a new and exciting app owned by Twitter that allows users to stream and watch live video broadcasts. The user has the ability to ask the broadcaster a question by typing a message in real time. I’m trying to learn all about Periscope (and gather up my courage) so I can begin creating my own broadcasts.

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This is my Periscope profile

Crossword puzzles on the go: I’m currently playing seven separate Words with Friends games on my iPhone. Since my phone is always with me the puzzles are easily accessible no matter where I am. It’s a great way to keep my mind active.

A study from the Archives of Neurology “.. found people who kept their brains active most of their lives by reading, writing, completing crossword puzzles, or playing challenging games were a lot less likely to develop brain plaques that are tied to Alzheimer’s disease.” ~CBSNews.com (January 24, 2012)

Reading: I've always been a voracious reader. The best way to keep our minds active is to read, read, read. In my line of work I do a lot of research. Much of it is medical jargon so I’m learning new terms every day. Reading, processing and storing new information has a positive impact on our brains.

“Neuroscientists have discovered that reading a novel can improve brain function on a variety of levels. The recent study on the brain benefits of reading fiction was conducted at Emory University. The study titled, 'Short- and Long-Term Effects of a Novel on Connectivity in the Brain,' was recently published in the journal Brain Connectivity.” ~ Psychology Today

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Check out Ruth’s new book, Being Brain Healthy: What My Recovery From Brain Injury Taught Me and How It Can Change Your Life. As Ruth says it’s “..about taking what is right in front of you and using it to nourish your brain and enhance your life.”

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