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

Posted on November 15, 2013 by MSAA

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

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.
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.
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.
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.
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:

https://msaablog.wpengine.com/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/

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

Posted on November 13, 2013 by MSAA

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

Life with MS and Cognitive Issues: You Never Know What to Expect

Posted on October 18, 2013 by MSAA

By Jeri Burtchell

Ever since telling my family and friends I’d be writing a blog post for MSAA on the topic of cognition, they have been ribbing me. The irony of the most absentminded person they know writing about memory loss is too amusing to ignore.

All kidding aside, cognitive issues can be a serious and bewildering symptom of MS. One that can creep up stealthily and impact every area of your life–and it’s more common than you might think.

My reputation for forgetfulness goes back a long way, predating my diagnosis of Relapsing-remitting MS in 1999. I’ve had memory problems for as far back as I can recall. However, how far back I can recall is debatable.

I start each day with my cognitive cup full. In the stillness of a quiet house at 5 a.m., I approach life hopeful for a day filled with accomplishments. Morning is when I do my best thinking. But I know what’s coming and I prepare in advance.

As surely as the sun crosses the sky, I’ll begin my descent into a foggy, cognitive swamp by midafternoon. Having a plan that helps me get through the day without being overcome by frustration is kind of like having a little set of crutches for my brain.

A huge dry erase board serves as my calendar. Using multicolored Post-it Notes, I translate my life’s chores, celebrations and obligations into a color-coded explosion of reminders. When a fleeting thought of something important lands briefly on my conscious mind, I grab it and quickly trap it in a sticky note. The important thought is added to my calendar, displayed like a butterfly on a pin board.

Green Post-it Notes are work–related and sprinkled all over the board. Yellow is for appointments and domestic duties; pink reminds me to pay the bills. Orange is for anything related to the kids, who have so many extracurricular activities that even a fully functioning brain would have trouble keeping up.

Although it all sounds good on paper, in reality, I’m grasping at straws. I frequently find myself herding well-intentioned sticky reminders from left to right in a multicolored cattle drive across the calendar as accomplishments go unfinished.

So why does this happen when I’m determined to plan out my day? Well, because of websites like Facebook and Pinterest. Or it could be as simple as someone asking me a question that leads my brain astray.

“Jeri, do you know where the phone book is?” my mother asks.

“No, Mom, let me look around.” I reply.

Fifteen minutes later, the Great Phone Book Hunt has yielded nothing, I end up Googling the number for her instead, and whatever task I was working on has slipped to the bottom of the cognitive swamp, totally forgotten.

Thankfully, even though my family members tease me, they are my safety net as well. Intuitively, everyone seems to have found their own way to help me stay on track.

My mother, who will be ninety next month, is an expert in the art of the gentle reminder. She keeps her own lists of what I should be doing and gives me a subtle nudge if she sees my memory falter. She does it with such finesse that a politician would be impressed.

The kids and grandkids know that telling me something important once is not enough. I need daily phone calls, texts, or emails to refresh my memory about picking them up at school or taking them to practice.

Although nobody gets angry when I come home from the grocery store without the bread or milk, there might be some exasperated eye-rolling when I explain that I forgot to even look at the list.

I once had to mail a package with only fifteen minutes to spare. I jumped in the car and raced straight there only to get out of the car and look around puzzled. I wasn’t at the post office. I was at the grocery store on the other side of town. Daydreaming about what to fix for dinner had apparently determined my route. Rather than obsess about how I could possibly have done that, I decided to make the best of things. I went grocery shopping.

Living with cognitive symptoms of MS can be challenging. It takes planning and teamwork to pull off a day that, for anyone else, would seem routine and uneventful. Failing at that now and then can be frustrating, but I try to keep things in perspective. As long as I haven’t forgotten to feed my family or pick someone up who was waiting for a ride, then I can forgive myself the other slips.

Living with cognitive problems isn’t all bad – in fact, there is an upside. I can read a good book several times and the ending still surprises me. I forget arguments as soon as they are over, so forgiving takes no effort. I could probably plan my own surprise party!

And even though my family might rib me about my memory from time to time, the simple act of everyone doing their part to help out seems to have brought us all closer together. I’ll have to jot a reminder to thank them for that – if I can remember where I put my Post-it Notes.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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