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Dazed and Confused: The Cognitive Issues That Come With My Multiple Sclerosis

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This post will not outline my adventures with medicinal marijuana nor make reference to Cheech or Matthew McConaughey. This post is about the cognitive issues that have turned my life upside down. The cognitive issues that saw me transform from a successful business woman with her own consulting company to someone sitting on a couch who can’t feed herself some days. This post is not meant to make you feel bad for me. Its purpose is to provide insight into the things that are invisible. When someone says, “But you don’t look sick” or “But you look so good,” they don’t see the frayed wires in my head wreaking havoc on the way I perceive the world.

I have been highly intelligent my whole life. When I was younger, I thought with such clarity. I had a photographic memory. I could memorize pages and pages of information and regurgitate it on exams or meet someone and two years later tell them what they were wearing when we first met. Then as a teenager, the fog started to set in. I started having attention issues. At first I noticed I had difficulty paying attention to what people were saying to me, and I had to ask them the same thing multiple times because I couldn’t remember them telling me the first time. This caused me great frustration, but I learned to adapt. I managed to get through university on the dean’s list and graduated with honors. My attention issues became part of who I was, and after a while I just accepted them. I still remained highly intelligent and did quite well for myself after graduation.

Fast forward a few years, a thick fog sets in. Doctor’s have diagnosed me with ADHD, low iron, and low vitamin D. Then comes the multiple sclerosis (MS) diagnosis. The clarity that existed when I was younger has evaporated and is replaced with what feels like a cloud covering my brain. Sometimes the cloud would dissipate and I would excel. I could do a lot in one day of clarity. That kept me going at work, and no one had any idea I was struggling to keep my poop in a group. One day the cloud set in and didn’t go away. I would sit at my desk and stare at my screen for eight hours. I’d shut my door so my co-workers couldn’t see me cry. How could I read and edit procedures if I couldn’t pay attention or retain any of the information I had just read? How could I take minutes in meetings if I couldn’t follow along? Going to your boss and telling him you can’t do something because your brain won’t let you is quite difficult. I took great pride in my work. I based my entire career on the way I thought and processed information. Who was I without my career? Who was I if I couldn’t think the way I used to? I finally had to make the difficult decision in consultation with my neurologist to leave the workforce. What was I supposed to do now?

 

I grieved for the person I once was. Letting go of that was not easy. But if I was to get on with my life, I had to let that girl go and focus not on what I can’t do anymore but what I can. I’ve purged my life of things that require a lot of attention and cause me stress. I’ve even stepped down from my role as a director on the provincial Board of Directors for the MS Society. I still have a lot to offer, just not in the same way I did before. These days I focus on my passion for photography. It’s what keeps me going most days.

People have no idea what’s going on inside of my head. They see pictures of me on Facebook having fun and going on adventures. I try to enjoy life as best I can. What people don’t see is me struggle to get out of bed every day. The disorientation that gets so bad, I can’t drive most of the time because I feel like I’m drunk. To the outside world I look “lazy” because I don’t wash my clothes, or cook or clean. It’s much easier to laugh along with them than it is to try to explain. Truth is, I wish I could do all of those things. Some days I sit on the couch or in bed and don’t eat until my husband gets home. It feels like the part of my brain that is responsible for initiating things is broken. I will sit for hours on the couch staring at my phone, and when I realize what I’ve been doing, it makes me frustrated.

I can’t easily switch between tasks. My processing has slowed down. I feel like I live in slow motion, trapped inside my own head. I don’t know what I’d do if it wasn’t for my friends and my husband. Things are much easier when I have an external stimulus to assist me in doing things. Most of my adventures are usually planned by someone else. I love being with people. I’m a social butterfly and interaction with others makes me feel somewhat normal. I joke and say I want a tall, handsome, shirtless caretaker. Although it’s a joke, there is a hint of truth in there. Some days I just want someone to take care of me.

Word finding has been interesting. I used to get so frustrated when having a conversation and not being able to find the word I’m trying to say. Now I find it amusing, and my friends and family are very good at interpreting me. Before writing this post, I had to ask my husband the name of the actor who was in “True Detective,” “Dazed and Confused” and the car commercials people make fun of. He knew right away I was talking about Matthew McConaughey, god love him. At Thanksgiving I was trying to explain to my best friend that I had washed the thing you put on the table that keeps it from getting dirty. “The tablecloth?” she asked? Yes, thank you. My life is like a constant game of charades.

Some days I have a pity party and dwell, but most of the time I am thankful I’m alive and have so many wonderful people in my life. I love living. I love experiencing new things. I may need help a lot of the time, but that doesn’t mean I’m helpless. I have a twisted sense of humor and that helps me get through a lot of what life throws my way. I enjoy making others laugh. Bringing joy to others gives me a sense of purpose. Most of the time I’m dazed and confused, but I always maintain my sense of humor.

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5 Ways I Deal With Sensory Overload From Multiple Sclerosis

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Multiple sclerosis (MS) has a huge arsenal of tricks up its sleeve so that things that seem oddly random or bizarre may go “undetected.” It means that my symptoms may not be the same as yours, or we may have some of the same symptoms and others not. I am guilty of not reporting a whole host of weird and wonderful symptoms, thinking that it’s just a glitch and that it cannot possibly be related to MS. Some of the things that have been going on inside my body and my head have been so “odd,” like sensory overload, that I had been very reluctant to tell my neurologist about them. That is until, one day, a friend of mine told me that it’s my role to “report the symptoms, not to diagnose them.”

So, what is sensory overload? Sensory overload occurs when the brain and nervous system is bombarded with too much sensory input from one or more sensory sources and the incoming sensory messages cannot be adequately filtered or processed.

Three of my five senses are often bombarded when I am out and about, which can be overwhelming. So, like with anything else, I have devised coping strategies to either alleviate or reduce the overload. Smell, sight and hearing are the senses most affected by outside stimuli and if any one of these senses is overloaded for a period of time, I can feel the headaches coming on, and, in extreme cases, a migraine.

Strong scented flowers and perfumes are instant triggers, as are bright and/or flashing lights, cluttered, messy spaces and loud, sudden noises, repetitive sounds or too many different sounds that I find hard to filter. Any of these stimuli are almost guaranteed to put my senses (and me!) on edge.

My idea of hell, therefore, would be a rave party held in a field of hyacinths in the middle of the night.

Obviously, one cannot stop living. There is a lot of living still to be done: people to see, places to go and things to do – you know the drill.

So, the following five techniques are some of the coping strategies I use to help me tackle sensory overload in everyday situations:

1. Earplugs. These can be a real lifesaver when out and about in noisy, crowded places. They don’t drown out all of the noise but they do help reduce the amount of noise and make the noise levels much more bearable.

2. Sunglasses. I carry them with me everywhere. I’ve been known to wear them at concerts too. Indoors, outdoors,  and anywhere where the lighting is just too harsh. A super cool pair of sunglasses are sure to do the trick to reduce the glare and minimize the visual overload.

3. Soft-glow light bulbs. These things are just amazing! Like I seriously freakin’ love them!! All of the high-voltage bulbs in our house have been replaced with the “soft-glow” energy savers. These bulbs give the room a warm, soft hue that is both soothing and relaxing… and, at the same time, you are reducing your carbon footprint. Win-Win!

4. Online shopping. Sometimes avoidance is inevitable. So, for those days when the senses feel particularly heightened and staying in the comfort of your own home is inevitable, online shopping can be a real lifesaver. Swapping a brightly lit, crowded coffee shop for PJs and the sofa doesn’t sound like too bad a trade-off. And it means you get to maintain a certain amount of control over your life. Thank goodness for online shopping – I can still do the grocery shopping, buy the kids’ school clothes and arrange the dog’s groom all without moving my tooshie one inch out of the house!

5. Vicks VapoRub and ground coffee. Intrigued? This is a nifty little trick I read about. There are certain smells that I really struggle with that make me feel nauseous and my head hurt. (Hyacinths would be one such culprit.) So, to save me from publicly displaying my gagging reflex, I carry a tiny container of coffee grounds with me. For the stronger smells, I have a jar of Vicks VapoRub that I can dab under my nostrils to block out the offending smell.

I’d love to hear what coping strategies other MS warriors use to cope with the symptoms of MS.

Follow this journey on Kerry Ann F.

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Fighting to Recognize Myself as Separate From My Illness

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A couple of weeks ago I was throwing myself a massive party.

Total number of guests: one.

Type of party: pity party.

Yes, I was wallowing in self-pity wondering, “Why me?” as I reclined comfortably on the sofa, browsing the internet on some device or other.

 

Fortunately, I came across this quote: “You are not your illness. You have a name, a history, a personality. Staying yourself is the battle.”

And it couldn’t have come at a better time. Depending on my frame of mind, these Pity Parties can last a couple of hours but this quote hit me right between the eyes as I realized…I’m still me! Separate and distinct from the multiple sclerosis. My own person.

I do admit that on the not-so-great days, it is harder to know where I end and the chronic illness begins. But that is a key part of the problem: when the illness becomes so all-consuming that it becomes harder to see yourself as separate from your illness, those are the days you have to fight the hardest. This is not just a physical battle – these are battles that will be fought in the mental arena.

Hence, it is important to stay positive, stay strong, stay motivated even when it’s hard. Focus on the good and, at the same time you acknowledge your limitations, also acknowledge that the illness is only a tiny part of you. Don’t give it more credit than it deserves because…

You are not your illness!

This post originally appeared on Kerry Ann F.

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My Multiple Sclerosis Mask

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Living with multiple sclerosis (MS), I often feel like I’m wearing a mask.

A disguise of sorts, for protection. But sometimes, it’s hard to tell who I’m protecting more – myself or the others around me.

Whether I’m with family, friends or even strangers, I don’t want to show the exhaustion, confusion or pain that is behind my (often) smiley exterior.

The smiles I present aren’t fake – I choose to live my life with joy and enthusiasm.

Life is incredibly precious. We truly are here today and gone tomorrow and I want to leave behind a positive and lasting impact.

I don’t want my children to remember me wincing in pain, friends thinking about how tired I always look or even my former co-workers reflecting that I just couldn’t handle the daily grind of the office.

Pride weighs heavily in this decision. It’s not as much “never let them see you sweat” as I just don’t want anyone to think, myself included, that MS is winning. My ultra-competitive nature has met its match with multiple sclerosis.

Back when I was working, each morning I’d ride the elevator up three floors to my work area. It was a short ride but in those final few moments before the elevator doors opened, I would lower my mask.

Security footage, if it existed, would expose what MS really looks like as I let myself show signs of pain, apprehension and exhaustion.

It’s hard to focus on presentations, month-end reports or metrics when you are worried about another relapse, your next medical treatment or whether you’ll be able to feel your left hand tomorrow.

But the moments those doors opened, I was grinning from ear to ear and doing my best to operate at 176 percent, all with a twinkle in my eye.

Even now post-career, I continue to wear my mask. It’s a 24 hour a day, seven days a week effort.

I do yearn to take my mask off and feel free of multiple sclerosis.

Sometimes, it happens, when I’m not even expecting it.

The other week, I was enjoying a night with old friends. My buddy was telling a humorous story and while explaining it, he started stumbling over his words and, as a result, ended up using the word “superficious.”

We both started to grin, aware of his error but he continued on for a few more seconds before stopping. Then we looked at each other and just started laughing hysterically.

I’m not sure why it was so funny. Maybe it was how hard he tried to sell this non-existent word, or my nonchalant, head-nodding reaction, as if I totally understood what he was saying.

It’s one of those jokes where you had to be there. But, in that moment – as the two of us keeled over laughing so hard it hurt – I forgot I had MS.

The mask was lifted. I was free in that one special moment.

And that’s the primary reason I wear my mask. I know these moments exist, but if I’m too distracted by how hard life with MS is, I’ll miss out on them.  I’ll fall into an emotional and mental abyss, where my thoughts are dominated by this disease.

I’m not alone in this struggle, I know others with MS or similar conditions also wear masks. I can see it during our interactions, when they are talking or even in their pictures on social media. We are acting out parts as we attempt to blend in with others.

Sometimes, this disease pronounces itself in obvious ways. Some are unable to walk, see or even speak clearly. But for many, we struggle with “invisible” symptoms as our immune system wages war on our central nervous system. You wouldn’t know we had MS unless we told you.

To the world, I look, walk and talk just like any other 40-year-old father of two.

I wear the mask because I hope to fit in. I want to survive. I don’t want to live in darkness.

But, in the cruel irony of MS, I need to wear my mask, so I can experience the light.

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Multiple Sclerosis Is Like a Box of Chocolates

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A few Sundays ago, I woke up with a tingling sensation in my left fingertips.

It was irritating but unfortunately, when you have multiple sclerosis (MS), waking up with new or odd sensation is a common occurrence. Life goes on.

The next day, the feeling had spread beyond my fingertips to my entire hand and each finger from trunk to nail.

Soon, my left hand, forearm, shoulder and leg all felt numb.

It was as if an alien life force, from the planet MS, had taken over the left side of my body.

You know that feeling you get when you wake up and your “arm is asleep?”  That’s probably the best way to describe it.  Except, much to my dismay, my hand, arm and leg never woke up.

Eventually, this alien force decided to concentrate all of its efforts to my left hand.

My hand still looks perfectly normal; however, it feels like a heavy weight is attached to it, as I raise it or swing it by my side.

When I open and close my palm, it feels like I’m grabbing a bean bag chair. I can almost hear the imaginary pebbles moving around as I make a fist.

My friend, an orthopedic hand surgeon, suggested some hand exercises to try, which I’ve done on a regular basis.  A few times, the kiddos have even joined me.

But the tingling and numbness remain, now as mere background music in my day-to-day life, but with my left hand mostly useless.

And that’s where I’m at today.

If you are fortunate enough to have two functional hands, imagine getting washed and dressed in the morning with only one.

Showering, washing hair, putting on deodorant, brushing teeth, shaving… no menial task is spared and the experience has become my own little obstacle course.

Then there is getting dressed. Tying shoes and fastening buttons has proved difficult with very little dexterity in my left hand.

Leaving my bedroom, life awaits me…

Per tradition, I always bring my wife coffee to start her day.

My son still wants to play basketball and my daughter still asks me to pick her up and throw her in the pool.

As for myself, writing stories is a major part of my life.

And it even extends to the minor things like signing my name, opening doors, scratching an itch.

But the sun still rises and the world continues to spin, regardless of MS.

So, I do what seems like the only reasonable response: I fight on.

When getting washed in the morning, I accept my limitations and know it’s going to take a lot longer. While putting on clothes, I avoid buttoned shirts or shoes with laces, unless truly needed. While shaving, I’m extra careful to not cut myself.

Getting undressed has proven difficult. My left hand is somehow able to manage putting shorts on, but as for taking them off, I struggle – finding very little success. My solution, a work-in-process, has been to slide them off, avoiding the buttons altogether.

Bringing my wife coffee is still possible but with extra care taken as I walk upstairs, holding the hot mug.

I still play basketball with my son, I just do it mostly one-handed. Thankfully my daughter is still small enough that I can throw and play with her in the pool, using my left hand sparingly.

And, I continue to write…

It’s been frustrating, but I’ve adapted to my new “normal.” I still use my right hand to type, but with my left, only my third finger hunts and pecks away, metaphorically giving the middle finger to MS.

To borrow from, Mr. Gump:

MS is like a box of chocolates. You never know what you’re gonna get.

Or, more directly:

One moment you’re worried about face twitching, the next, you can’t even dress yourself.

One week you struggle with shooting pains, the next, you struggle to type a complete sentence.

One day you are unable to see clearly, the next, your wife has to help you cut your steak at a fancy restaurant because of a numb left hand.

With, MS, you truly never know what you’re gonna get.

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To the 'Robo-Doc' at the Neurologist's Office Who Answers Emails

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Dear “Robo-doc,”

Bless your heart, you know not what you do.

* * *

It’s been a hell of a year so far. Mom’s multiple sclerosis had plateaued for a few years. Yes, she had her share of infections, life-threatening sepsis, a diagnosis of dysphagia (difficulty swallowing) and complete and total loss of the use of all of her limbs, but for the most part, she was as I liked to say, “the picture of health.” Vitals were overall pretty good, she could still talk and enjoyed going on walks (rolls) in her wheelchair and talking to family over Skype. She still had an appetite, and all the important things looked OK.

 

And then 2017 started and it was all downhill. Years of brain damage from MS lesions and epileptic seizures has led to uncontrollable tremors and muscles spasms which, left unaddressed, drove her heart rate and temperature up. We had to sedate her and cover her with ice packs almost every other day. Attempts at treating these tremors involved blood tests, X-rays, CTs, starting supplements of potassium and magnesium, using CBD oil, and most recently, trying a muscle spasticity drug.

On top of all her seizure medicine, this spasticity drug took Mom out for the count. I’m talking complete and total fatigue, inability to talk, inability to open her eyes, and even falling asleep while she was in the middle of swallowing food and pills. Talk about rough!

The thing about chronic illness is that when you’re going through the thick of it like we were with Mom, you’re really relying on your prescribing doctors and care network to be there for you. To be listening, trying to help, Dr. House’ing the s**t out of stuff to help you figure out what’s going on, what’s happening, and what we can do to help Mom out.

Mom’s primary care physician is amazing. She listens, and Mom’s home health agency works closely with her to monitor Mom’s condition, get tests executed and treatment implemented as quickly and successfully as possible. Mom’s neurologist, on the other hand, is another story…

… and that’s what this story is about, or at least, his “robot.”

Mom has been seeing this neurologist for almost 15 years. He is well-acquainted with Mom, me as her caregiver, and our entire situation. We saw him a couple months ago and he was the one to prescribe the spasticity drug. We talked at length about the tremors and spasming, about how horrible they were and how we had to sedate Mom recurrently to control them. We agreed we needed to find a solution to help with the spasms but not knock her out too much. (This wasn’t the first time either – I was in contact with the office throughout the spring prior to visiting them with an appointment).

This is all preface to a message I sent through their online patient portal to let them know what was going on with Mom’s condition. I emailed them two messages as I ran out of characters, the first saying:

After starting Baclofen 10mg 2x a day on 4/26, Mom experienced a significant decrease in her ability to stay awake, eat, talk, you name it. She couldn’t even open her mouth when prompted to take her medicine.

She had a gran mal seizure at 7:30pm on Sat. 4/29, overheated to 101.9 degrees, was giving 4 mg of ativan

We stopped the Baclofen on 4/30 because Mom could hardly function.

We drove back to Austin on May 3rd and 4th. She got car sick the first day and threw up.

Back in Austin, she began to perk up a little. On May 8th she had a 1 min. gran mal seizure in her wheelchair, had 4mg of ativan

On May 10th, she experienced more spasming and non-seizure related tremors

A mobile x-ray was done of her chest and her PCP prescribed Levoquin starting May 12th (for 10 days)

We restarted her Baclofen (but only 5mg 2x daily) on May 10th

Since restarting she has experienced minimized spasming and tremors, heart rate fluctuates

And then I let them know there was more coming in a second email.

Originally, I received this odd reply:

After reviewing the message, it sounds like you are having trouble with your legs and walking, I see that you are asking for an EEG, but, was wondering if you meant EMG to assess the nerves and muscles in those areas?? An EEG would be more geared toward seizure activity. let us know, thanks

Naturally, that does not seem to be meant for me so I reply:

I believe you have replied to the incorrect email – your response seems meant for another patient. Please review, thanks.

Then I get this reply: (I have not touched the formatting, capitalization, anything like that — I replaced drug name.)

in looking at the story, I do feel that [spasticity drug] may be the problem here. you are on quite a few CNS active medications (for your epilepsy) and the [spasticity drug] may be one too many

better off to have some level of muscle spasm than the other problems described

thanks

That is their reply.

And I know, they’ve outsourced this work to a bot, a robo-doc who is scraping for keywords, seemingly lacking emotional intelligence.

It’s obvious to me this is probably not a doctor replying, not a nurse, and by the sounds of it, not anyone with familiarity of Mom’s history or any acknowledgement of her condition and what we are going through. It feels like a slap in the face. Anyone who says “better off what you’re going through than something else” seems to not be a trained medical professional and does not have any sort of understanding of how to work with a patient and caregiver dealing with chronic illness.

If whoever responded had any idea of the havoc “some level of muscle spasm” has wreaked this year! Mom is barely able to exist because of these muscle spasms – her heart rate spikes, her temperature leaps up, she has to be sedated, covered in ice packs, watched for hours at a time and monitored for seizure activity. She can’t eat, she can’t talk, she’s in pain and discomfort and anguish. “Some level of muscle spasm” is not an option.

It’s enraging that they’re outsourcing basic common doctor-patient courtesy/attention/care for God knows what this is. Your email responder may save you money and time, but please know that it limits your contact with patients, delivers bewildering and disrespectful replies like the one I received, and it makes patients feel like they are completely alone in this chronic disease.

But alas, robo-doc, it’s not your fault. You know not what you do.

It’s when the people whom the most vulnerable patients rely on turn on those patients, employ machines and automated messaging to handle their concerns and questions, that’s when I believe we’ve hit a breaking point in healthcare.

I’m flabbergasted, astounded, and oddly amused by this reply I received today. Is it even HIPPA compliant? I feel like I need an answer to what is going on.

Can you care so little for Mom that this semi-developed machine can decide whether or not we continue a prescription? Can you care so little for Mom that her future may be influenced by someone who has no previous medical history or understanding of her situation, her care, or her condition?

Well, I know I won’t let it.

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