There is a really
good article on The Patient Experience website. I want to share part of it with
you.
“We all know that Multiple Sclerosis
(MS) is a disabling set of symptoms; some of us know this better than others.
People who have no experience of MS often do not realize the impact these
symptoms can have on people’s lives. People with MS will either disappear from
public consciousness or be mistaken for someone displaying erratic behavior,
and there is ample evidence to show how people using wheelchairs are either
ignored or talked down to.
One of the difficulties for the ‘public’ to understand MS is
that people display a variety of symptoms which do not manifest in all in equal
measure, so some people display very few visible symptoms; others are severely
disabled within a few years and the range of disabling symptoms range from
physical to cognitive and emotional. It is difficult for people who do not
suffer from cognitive impairment to understand the impact this can have on the
life of the person afflicted by it. This article aims illustrates what it is
like to live with constant ‘brain fog’, sometimes known as ‘cog fog’ but
medically described as cognitive function impairment.
Loss of memory is
often one of the first sign that something is wrong, but there are others and
different people may have none, one or many of these problems. If you are
unlucky enough to suffer a range of cognitive function impairment the impact on
your life and that of those who know you, can be devastating. In spite of being
an intelligent person you might lose the ability to perform complex tasks such
as map reading, mathematical calculations and list making for example. You
might have problems multitasking, or planning and executing a simple project
such as cooking a meal. But the effects of ‘brain fog’ do not stop there:
people can have difficulty expressing their thoughts and emotions, meandering
around a subject, struggling to find the correct words to express themselves.
They may constantly repeat themselves either through faulty memory or
uncertainty about how clearly they communicated. Often repeating the same
things as a way of checking their thoughts. They describe their distress at not
being able to make a decision; they talk about not being able to formulate
their thoughts, of living in a kind of fog that makes it difficult to ‘see’ the
problem and consequently the solutions to problems. Sometimes the confounding
problem might be a simple question such as: “would you like a cup of tea?”
People with ‘brain
fog’ can also be hypersensitive to environmental factors such as light, heat
and sound. Hypersensitivity can make it difficult to cope with irritants that
others cope with easily. Bright lights and sudden noises, small irritants cause
disproportionate reactions which appear irrational and unwarranted to
onlookers. To understand communications, problems and propositions as well as
learning new tasks takes longer and may require many repetitions of the process
before it is mastered.
At the same time people
suffering from ‘brain fog’ can lose visual perception which has a double
effect: they can appear clumsy because they will not see obstacles, especially
small ones like wires and protruding shelves for example. But poor visual
perception also makes them unaware of body language and other clues that inform
about other people’s responses. This collection of symptoms has a profound
effect on social interaction with friends and family.
People who suffer from cognitive function impairment are
subject to different but as devastating disadvantages as a person with physical
disabilities because employers, family and friends may perceive the sufferer as
a difficult or incompetent person whereas their behavior is something they
cannot help. These hidden symptoms lead to low self-esteem, depression, and a
devastated and lonely life.”
I know this seems like a long blog for me, but this is a
very important and often misunderstood part of what most of us with Ms
experience. This is not a once in a
while thing………….it is an everyday thing.
What seems like a normal, average thing to do becomes a major
accomplishment.
Sometimes it is all I can do to remember how to comb my hair
and brush my teeth. I have sat on the
bed in the morning and just looked at my shoes and socks and wondered what to
do with them. Not every day, but many
days. I try to write this blog each day
to keep my mind working, but some days it is all I can do to make a complete
sentence.
I know most people relate these types of mental functions as
having to do with Alzheimer’s or dementia in older adults. To a degree, that is true. But there are countless numbers of MS
patients in their 20’s and up who go through these same things. It makes for some very frustrating days for
all concerned.
Brain Fog is a fairly good name for what this
involves. For me, the mental thought
process is more like blown away….…maybe Hurricane MS seems like a more
appropriate name!!
1 comment:
Janie, I'm very fortunate that this has not been one of my symptoms. I stressed about it so much, thinking that it would happen. My neurologist sent me for a neuro-psych exam to establish a baseline, and I saw that my fears were not substantiated by the results.
I feel badly for you and others who go through this because I watched as my mother went through the same process with dementia. She was an extremely intelligent and talented person, but within a very short time, she lost it all.
I try to keep my brain exercised by writing, reading, and doing puzzles. So far it's working, but all it takes is one little lesion and I could lose it, too.
Thanks for the thorough explanation -- it helps me to understand what's happening.
Peace,
Muff
Post a Comment