Tuesday 24 May 2016

Guillain-Barre
Matt Seinberg

This has been a very difficult summer for us, starting with trying to make vacation plans, which I've written about before, and having my mother-in-law Liz come down, with what turns out to be a not so rare virus, called Guillain-Barre Syndrome (GBS).

My daughter Michelle had to write an essay for her college English class and she decided to write about GBS; and what she has learned and observed about it. Her teacher's comments were, "Very nice, I hope she continues to improve," and "You've learned a lot about her illness."

I decided to let Michelle and her essay tell you about GBS. I hope you learn as much about it as she did.

“In mid-July, my grandmother, Liz, was diagnosed with Guillain-Barre Syndrome (GBS), which is a disorder that occurs when the body's immune/defense system mistakenly attacks part of the nervous system, which is caused by a virus. This leads to nerve inflammation that causes muscle weakness and other symptoms such as numbness and tingling in the hands and feet, and sometimes around the mouth and lips. Muscle weakness can also occur in the legs, feet and arms and the sides of the face, causing trouble in speaking, chewing, swallowing and not being able to move the eyes. Back pain can occur as well.

“As time elapsed, she experienced pains and emotions she had never felt before. This was all part of the disease, and she felt trapped inside her own body. The healing process takes time and patience. The first and most important treatment done is plasmapheresis, which filters anti-bodies out of the bloodstream. This was done almost every day over a week and I could see improvements after each one.

“The healing process includes speech and physical therapy to help her talk and walk properly. Getting her to eat was very difficult, considering that she was having trouble swallowing. She had to eat pureed food, which she hated, and was only able to drink thickened water.

“In the past few days, I have noticed and experienced new sights and thoughts on how this disease is treated. Yesterday I witnessed a physical therapy session given by two nurses. These nurses stretched her leg muscles to the point where they hurt. This eventually will make the muscles stronger so my grandmother will be able to walk again.

“I also examined the way they gave these lessons without equipment, just hands and voices. They communicated in such a great way that my grandma felt more support and care than she did the actual stretches. In the past few days, these evaluations and determinations have given me a new way of noticing details. This experience has led me to learn more about this disease; how it's treated and cured. I've used my senses to help my grandmother the best ways I can.

“I've noticed changes in the way she now eats, speaks and communicates with others. I've learned that I can't take people for granted, because in the blink of an eye they could be in a life or death situation.

“In the last few days, I've seen how her eating habits have improved dramatically from a honey consistency pureed food to almost solid foods. She has received swallowing and throat exercises for as long as she has been in the hospital and rehabilitation.

“All of these exercises are putting her towards the road to recovery and I hope that one day soon she will be able to do all the things she was able to do before she got GBS.

“Less than 4000 people come down with GBS each year and because this disease is so uncommon, it is often misdiagnosed and there is no logical reason for how and why it can affect someone. GBS isn't from genetics and it is very uncommon for two people from the same family branch to share this disease.

“Overall, this experience has shown me how important is to be there for your family to always keep your eyes open for details for why something is the way it is, and why it is that way.”

GBS has affected our everyday lives. My father-in-law, Mort, comes over for dinner three or five times a week now, along with spending more time with all his grandchildren. Michelle goes to see Liz as often as she can, mostly after school and before work. My wife Marcy visits at least four times a week.

I'll try to visit on Fridays around lunchtime with Michelle, just so we can encourage her to eat.

The next step in Liz's recovery is to come home and have a live in aid to help her with therapy so she can get back to having a normal life.

Can life ever be normal again after going through an experience like this?

Matt Seinberg lives on Long Island, a few minutes east of New York City. He looks at everything around him and notices much. Somewhat less cynical than dyed in the wool New Yorkers, Seinberg believes those who don't see what he does like reading about what he sees and what it means to him. Seinberg columns revel in the silly little things of life and laughter as well as much well-directed anger at inept, foolish public officials. Mostly, Seinberg writes for those who laugh easily at their own foibles as well as those of others.

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