You Know You Have MS When…

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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 ____”?

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

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

 View of Puget Sound by Carolyn Bowlus

“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.

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

MSAA is very proud to present our 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 MSAA Art Showcase submissions.

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

 Pretty Petals and Peaches by Lucinda Mierek

“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.”

Read more

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

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.

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How do you treat your MS?

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.

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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.

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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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Sticking to My Resolution for Better Health and MS Symptom Management

By: Matt Cavallo

I’ll admit it. The holidays were not good to my waistline. My pants are tight and hard to button, and it is uncomfortable to reach down to put on my socks and shoes. At the end of the summer, I weighed in at 190lbs. I just got off the scale and I was exactly 211 lbs. With the weight gain, my New Year’s resolution was to start exercising more and eating less.

The extra weight is a problem for me and my MS. That 21 pounds has definitely made a difference in the way I feel. At 6’2”tall I don’t look that much heavier, I feel like a completely different person. The extra weight also seems to increase weakness and tingling in my legs. Also, my energy levels have dropped and my fatigue has increased. I find myself waking up later and later to walk my dog and the walks are becoming shorter. It is already halfway through January and I am not making progress on my goals.

I was talking with my wife who told me that it takes 21 days to change a behavior. Often with resolutions, we start with the best of intentions, but don’t stick with it long enough to change our behaviors. This has been the case with my diet and exercise resolution. I started out strong for the first couple of days, but have regressed to my old ways.

However, my old ways are not good enough for me. In living with Multiple Sclerosis, it is important for me to take charge of the areas of my health that I can control, like diet and exercise. If extra weight is going to make my MS symptoms flare up, I need to fight through the fatigue and get control. To do this, I am going to create a Wellness Journal. This journal is going to track my daily exercise routine and food intake. The reason for keeping these journals is to keep myself accountable. If I keep a record of my progress everyday then I will be more likely to stick to my resolution. New Year’s doesn’t have to be the only time of year we reassess life and develop goals.

Successful Goal Setting Tips

  1. Keep goals realistic: Don’t set yourself up for failure by aiming for something that is completely unachievable.  It is best to start with a small goal and work towards bigger goals as you accomplish them.
  2. Create a plan that works for you: Figure out exactly how you can accomplish your goal and write down specific actions that you will take.
  3. Stick to your plan: Since changing a habit takes about 21 days, perform that habit every day to make it a conscious part of your day.
  4. Keep a daily journal: Write down what you do every day to hold you accountable.  This will also help you identify obstacles that may be holding you back.
  5. Don’t give up: Even if you slip up on your journey, forgive yourself and start fresh they next day.

I am also going to post my 21 day journey on my personal blog at www.mattcavallo.com/blog. By making my journey public, I am holding myself accountable to all of my readers, as well. My hope is that my story will also motivate others struggling with sticking to their New Year’s Resolutions or any goals for that matter to get back on track.

 

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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2010 – An MS Relapse for the Holidays Part Two – Recovery

By Matt Cavallo

As I sat in an infusion suite chair to treat my holiday relapse, I started to feel really sorry for myself.  I wasn’t sure what I had done to deserve this MS fate. I thought about my young boys and how unfair it was to them that their dad was having another relapse. I thought about the additional burden that this relapse was putting on my wife, having to care for two toddlers on her own.  All this was happening during the holidays, just two months after I had gone through an anterior cervical fusion. To top it off, I was experiencing these uncontrollable emotional outbursts, or PBA as my neurologist called it, which were embarrassing me to the point of not wanting to go out in public.

Then my thoughts changed. I knew at that moment that instead of feeling bad for myself that I was going to have to reach deep down and pull myself together for my wife and kids. My wife is a stay-at- home mom and I am the sole provider, so I knew that if I didn’t get my act together, our quality of life as a family was going to go downhill and fast. I needed a plan.

Steps to Recovery

  1. Be honest – During this relapse, I had convinced myself that it was every factor besides MS. I let the symptoms go on for too long and they were affecting my home and work life. I was going to have to be honest with myself and others about what I was experiencing and that it was related to my MS.
  2. Reduce additional holiday stress – The holidays add stress to an already stressful life. If I had to go food shopping or present shopping, I would go at off hours like late at night to avoid the stress of a crowd. I made lists to prioritize my tasks and would check items off the list. For a list of more ways to reduce holiday stress, check out Angel’s Holiday Hustle Blog.
  3. Gain control – When my emotions began to get the best of me, I would take a break. MS emotional outbursts can come on at any time. A good way to manage emotional outbursts is to remove yourself from the situation, take deep breaths or find a distraction. My favorite distraction is to walk my dog.
  4. Do not take on too much – I have a habit of overdoing. During the 2010 holiday relapse, I learned to enjoy the simple things. Holidays are about spending time with family and friends;try to relax and enjoy that time without overdoing it.
  5. Talk to your doctor – I waited too long to see my doctor. If you are experiencing symptoms, you should contact your doctor as soon as possible.

As the calendar turned to December in 2010, I was feeling like the worst was over. The medicine had run its course. I was feeling back to my normal self. Gone were the emotional outbursts, weakness and fatigue. I was back to normal at work and home life now returned to the joy of watching my boys. I didn’t bother with the stress of trying to compete for deals on Black Friday or hanging Christmas lights from the rafters. Instead, I realized that the true meaning of the holidays was to be there in good spirits for the ones you love. As Thanksgiving 2013 approaches, I am thankful for everyone in my life and continue to enjoy simple stress-free holidays with the ones I love.

Happy Thanksgiving, everyone!!!

References:

http://blog.mymsaa.org/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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2010 – An MS Relapse for the Holidays Part One – Relapse

By Matt Cavallo

In November of 2010, I was still recovering from neck surgery. My neck had been a problem since 2005, when Transverse Myelitis made my spine swell up. The swelling pushed my vertebrae and discs out of alignment. Eventually, just the stress of daily activities caused a piece of vertebrae to fracture causing severe stenosis of the spine. My neurologist told me that if I didn’t consider surgery that there was a pretty good chance that I might become quadriplegic.

I worked for a Neuroscience clinic at the time and was friends with the neurologists at the clinic. I had them each independently look at my MRI films. All of them agreed with my neurologist- surgery was inevitable. I had my cervical spinal fusion surgery in early September of 2010.  In order to prepare for the surgery, I had to stop taking my MS medicine.  I was also instructed to stay off my medication after the surgery while my body was recovering.  During my recovery period, I became less concerned with getting back on my medication and continuing treatment. I had hit my breaking point, and I just didn’t feel like fighting anymore.

As the calendar approached Thanksgiving, I started to become symptomatic. I hadn’t been on any MS treatment for ninety days and was noticing increased fatigue and weakness. At the time, I attributed my symptoms to working fulltime while enrolled in a Master’s program along with raising two boys, ages three and one, who weren’t exactly allowing for a full night’s sleep.

While the weakness and fatigue were troubling, I also started experiencing uncontrollable mood swings. I would break into hysterical laughter at inappropriate times and then break down and start crying and become inconsolable. I am not a person who typically shows intense emotion, so these kinds of outbursts were completely out of character for me.

Still, I didn’t think that anything was seriously wrong with me. I thought that the lack of sleep with a teething one-year old coupled with my ongoing recovery from spinal cord surgery was why my emotions wer running rampant. Then I started forgetting tasks at work that I typically would complete automatically. I was also dragging my leg and having problems with vision in my right eye.

During the week of Thanksgiving, the clinic was slow. The nurses had become worried about me. The day before Thanksgiving, we had very few patients and my practice manager called my neurologist and got me an order for an MRI. I was resistant. I attributed my symptoms to the stress that I was experiencing at work and at home, saying that having to prepare Thanksgiving dinner tomorrow was the cherry on top of the cake. Still, she persisted and took me over to radiology at the hospital and got me a follow up appointment with my neurologist the following Monday.

My MRI studies came back with my lesions glowing like lights on a Christmas tree. I was defeated. When was MS going to let up? Now, I had to tell my wife on the day before Thanksgiving that I was having yet another relapse. However, when I talked to her about it, instead of crying, I started to laugh uncontrollably. During Thanksgiving dinner with her family, I was having emotional outbursts and crying about how beautiful the Turkey and potatoes looked. After dinner, Jocelyn talked to me and she wanted me to talk to my neurologist about my emotions, along with my other symptoms.

That following Monday, I found myself in the familiar chair of my neurologist’s office. He confirmed that I was having a relapse. He prescribed three days’ IV Solu-medrol to help with the exacerbation. I told the doctor that I was having these weird emotional outbursts and was concerned that the IV steroids would further complicate my already emotionally unstable state.

He told me that it sounded like I was having something called Pseudobulbar affect or PBA. According to a Healthline article, “Pseudobulbar affect (PBA) is a condition in which you suddenly start to laugh or cry. The reaction isn’t triggered by anything—like a funny joke or sad movie. You just burst into laughter or tears without any real cause, and you can’t stop laughing or crying.” He wanted to stay on course with the treatment because the PBA seemed to be related to my MS relapse, but to call him if I started to feel out of control.

Tune in for my next blog to find out how I was able to recover from my holiday relapse and strategies I used to gain control of my emotions and stress levels.

Reference:

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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The Neuropsychological Evaluation for People with Multiple Sclerosis: Part II

By Dr. Lauren Strober

For many individuals, medical testing, especially testing for cognitive changes, may cause fear or anxiety.

How scary of a process is it?  For some, undergoing cognitive testing when one has already noticed a decline is very intimidating – many fear that noticing a change is not as scary as confirming there is an actual change.  But, like anything, knowledge is best and with MS, knowledge is the best way to tackle a variable, unpredictable disease.  Moreover, more often than not, individuals find that they are doing better than they think and that although there are some weaknesses, they also still have their strengths. Again, knowledge is power.

As far as the process itself, a full neuropsychological evaluation can last anywhere from three to five hours and is typically divided over a few days.  Cognitive testing can be extremely tiring and that is not just specific to MS.  Many patients report needing a nap after!  But, most neuropsychologists are aware of this and will offer breaks and other accommodations to make the experience as painless as possible. After the evaluation is completed, you will receive written and verbal feedback as to how you did and what the recommendations are based on your individual cognitive profile. Such feedback and knowledge of one’s abilities and difficulties can be very empowering and assist individuals with taking the right steps in assuring that they can tackle their MS and its symptoms head on!

If you feel that you can benefit from cognitive testing and/or are noticing changes in your thinking, do reach out to your neurologist or a neuropsychologist in your area today.

*Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS.  She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

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The Neuropsychological Evaluation: Allaying Your Fears and Recognizing its Value for the MS Community Part I

By Dr. Lauren Strober

Many individuals with multiple sclerosis (MS) will begin to notice the subtle cognitive changes typically associated with MS.  Individuals may report being more forgetful, unable to multitask as well as they used to, or feeling as if their thinking is slowed down.  Some may say, “I feel as if I am just not functioning on all four cylinders.”  They would be right. In fact, anywhere from 43% to 70% of individuals with MS suffer from some degree of cognitive dysfunction.  Most often, it is slowed thinking or problems with memory that are most noticeable and known to have the greatest effect on day-to-day functioning – this can be anything from preparing a meal for the family, doing everyday tasks, or even successfully doing one’s work.

When cognitive symptoms begin to interfere with such tasks and one’s overall quality of life, it is best to consider speaking to your neurologist about undergoing a neuropsychological evaluation.  A comprehensive neuropsychological evaluation consists of a battery of cognitive tests assessing language, attention, verbal and visual memory, processing speed/working memory, and executive functions (e.g., planning, organization, reasoning) as well as a full psychological evaluation assessing things like mood, anxiety, sleep, and fatigue.  These latter factors are known to also play a large role in cognition and are, fortunately, reversible with effective treatment.  For instance, while slowed thinking is common in MS, consistent poor sleep or depression can also lead to cognitive disturbances during the day and further compound existing cognitive disturbances. Thus, proper identification of one’s current cognitive abilities as well as factors that can affect cognition (such as poor sleep) is the first step in taking appropriate steps in managing any cognitive changes associated with MS.

So, when is a neuropsychological evaluation right for you? Again, if you are noticing changes and feeling that they are beginning to impact your daily functioning and quality of life, you should consider having a neuropsychological evaluation.  This is particularly important if you are employed and/or are a student and can benefit from some recommendations and strategies as to how best maintain your job or schooling, while working to your strengths and minimizing reliance on your weaknesses. Formal documentation of such cognitive difficulties can also assist with obtaining appropriate accommodations at work or school.  Finally, some recommend completing a brief neuropsychological battery such as the Minimal Assessment of Cognitive Functioning in Multiple Sclerosis (MACFIMS) at the onset of one’s illness so that there is a baseline to which patients can better monitor the progression of their illness and cognitive changes associated with such.

If you think neuropsychological testing might be helpful for you, stay tuned for PART II on Wednesday to learn more.

Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS.  She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

 

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Losing My Mind Part Two: Overcoming an MS Cognitive Relapse

By Matt Cavallo

In my last bog, I was in the throes of severe MS cognitive relapse. My short term memory was shot. My word association was gone. Everyday situations confused me. I was a danger to myself and those around me and yet I couldn’t comprehend that something was wrong with me. It took an intervention by my wife, Jocelyn, to get me to schedule a neurologist appointment.

The neurologist immediately sent me for MRI studies. Fitting for the holiday season, the contrast dye administered during the studies lit up the active brain lesions on my films like a Christmas tree. It was recommended that I started a course of treatment immediately.

I found myself isolated in an infusion clinic, depressed that MS had caught up to me again. I was scared. This relapse had affected my ability to work. I had missed time with my mobility and vision relapses, so I was afraid that this would be the final straw at my company. I couldn’t afford to lose my job, not around the holidays. Not because of MS. I also needed to get my mind back. In order to do so, I needed a plan. Here is what I did:

  1. Get a doctor’s note: I had my neurologist write a letter to my boss explaining my limitations. I also had the doctor talk with my wife to help convey my situation.
  2. Meet with your boss: I dropped the letter off at the office and had an honest conversation with him about my relapse.
  3. Create task lists: I got a notebook and listed the things I needed to do each day. I would cross things off the lists as I accomplished them.
  4. Leave sticky notes: I put sticky notes around the house that said “TURN OFF”, “CLOSE ME” or “FLUSH”.
  5. Keep your mind active: I found that reading, writing, crossword puzzles, Sudoku’s or any kind of thinking activities helped with my word association, recollection and memory.

It was early January 2007 and I was two months past my cognitive relapse. Things were becoming crystal clear again in my mind. I was back at work and benefited from a slow holiday season. My boss made accommodations for me and kept me on light duty until I was able to perform all the tasks of my fulltime job. I had made some delicious holiday meals without burning down the house and was able to have an intelligible conversation.

Jocelyn comes home from work, smiles and says, “I’m pregnant!” She grabs me and hugs me in the joy of all we had to overcome to conceive. I knew then that I was going to have to work harder than ever because I never knew when MS was going to strike again. So I set goals for myself that I wanted to accomplish and set out to accomplish them, despite the cognitive issues.

I dusted off an incomplete first draft of my memoir and spent hour after hour writing the story of my MS. My wife and I worked on it together. The writing and the conversations I felt helped rebuild my cognition and my mind was coming back with each page I wrote. Finally, the goal of being published happened in June of 2012 on my seventh anniversary of my MS diagnosis.

During that same month, I graduated with my Master’s in Public Health Administration. I had returned back to school to better understand the health care system to help make a difference in the lives of patients like me. I graduated with a 3.98 GPA, which was the highest in the program.

To realize these goals despite the challenges I’ve experienced with MS is incredibly meaningful. I cannot control what MS does to me, but I can do the best I can with what I’ve got. With my Master’s degree and published memoir, I have accomplished things that I never intended on doing prior to MS. Whatever your goals are if you set your mind to it you will be surprised at the results. If I can do it, you can too!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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