4. iii
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Author’s Note
While I was in my early years of high school, my
mother was diagnosed with Myasthenia Gravis. It
was a confusing time, knowing there was something
wrong, but not truly understanding what was
happening.
I could see her struggling to smile and eat, and hear
her struggling to speak, but for the most part she
looked just the same as she always had. Because
she didn’t look unwell (besides her weight loss and tired looking face) I found it difficult to
comprehend why she no longer felt capable of performing many small daily tasks. Perhaps
even more so at that age, I struggled to understand the emotional impact the illness had on
my mother in her worst moments.
As I’ve grown older, my understanding of and appreciation for everything my mother
struggled through has grown. Often I have wished I could go back in time and tell my
younger self to make more of an effort to help around the house and teach myself how to
care for my mother emotionally.
When the Myasthenia Gravis Association of Queensland (MGAQ) asked me to bring
together a collection of stories about people living with the condition, I was excited to
be a part of the project. I know the MGAQ has been of considerable help to my mother
in the past years, as she has journeyed back to health both physically and emotionally.
Knowing she was not alone, and sharing in the experiences of others who could truly
understand what she was going through, was a great comfort. I am sure that having access
to a collection of stories such as this would have been reassuring not only for my mother,
but also for the rest of my family.
My father is a nurse and was the first person to recognise the source of my mother’s
symptoms as Myasthenia Gravis, so he had a fairly firm medical grasp of what was going
on inside her body and was able to explain much of this to our family. However, never
having felt what my mother was feeling, and watching her deteriorate, was a difficult and
confusing time for all of us. It was one thing to provide physical support, but knowing how
to approach the situation from an emotional perspective was difficult.
Hearing the stories of those who have offered to be a part of this project has been inspiring,
to say the least. It has been my great privilege to put their words and thoughts to paper
and to broaden my understanding of what it’s like to be burdened with a chronic illness.
I found this an excellent opportunity to connect with my mother’s experiences in a way I
was never able to before, and wish now that I had sought out knowledge, reflections and
advice from those with the illness much sooner. I’m so proud of my mother for coming
through the worst of her illness with strength and positivity, holding on to the person she
always was, while using her experiences as an opportunity for growth.
It has been an amazing privilege to be able to use my passion for writing in this way, and
it is my hope this book will offer comfort and encouragement to others like my mother, as
well as family and friends trying their best to provide effective support for their loved ones.
5. 4
Preface
The Myasthenia Gravis Association of Queensland Inc. (MGAQ) is a volunteer run
organisation dedicated to supporting people with Myasthenia Gravis. Since 1992, the
Association has provided support to people diagnosed with a myasthenic disorder and
endeavoured to raise awareness of this condition.
Journey with Myasthenia Gravis is a compilation of the inspiring stories of nine people
diagnosed with Myasthenia Gravis (MG). The book was first suggested to the MGAQ by
Professor Pamela McCombe in 2012.
It is the Association’s hope that reading this collection of personal stories will help people
living with this little-known and often misunderstood condition. Our aim in publishing
Journey with Myasthenia Gravis was also to encourage a greater understanding and
appreciation of the condition among carers, family and friends.
The Association wishes to thank the storytellers – this book would not have been possible
without them. Their time has been freely given to share openly and honestly their individual
stories. For this we are extremely grateful. Imparting the history, experiences and wisdom
gained from these personal journeys with MG will be of immense comfort and benefit.
It should be noted that in providing these stories, the MGAQ is not attempting to make
recommendations or to provide advice.
The MGAQ also thanks the author, Sarah-Jane Fleer, for her tireless efforts to accurately
and compassionately collect, record and recount each person’s words and thoughts.
Without such a generous offer of time and skill, this project would not have prevailed. We
also thank Professor Pamela McCombe for her thoughtful suggestion and for contributing
the ‘Foreword’ to this book.
Finally, the MGAQ acknowledges the Queensland Department of Health, which has
provided the financial support to enable Journey with Myasthenia Gravis to be published.
Myasthenia Gravis Association of Queensland Inc.
PO Box 16, Mt Gravatt, Queensland 4122 Australia
Freecall: 1800 802 568
Website: www.mgaq.org.au
Email: info@mgaq.org.au
6. v
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Foreword
This book provides a window into the experience of nine people with Myasthenia Gravis.
The stories are all personal, and show the different journeys from symptoms to diagnosis
and treatment. But the stories also have common themes: the difficulties (and sometimes
delays) in getting an answer for symptoms, the fear that is experienced, the struggles with
therapy, the loss of previous ways of living, the difficulty in having to ask for help and the
problems with being helped too much.
Thus, this is a unique and valuable document. To a neurologist such as myself, it provides
the lesson that this disease, which is regarded as treatable, has profound and life-changing
impact. For friends and relatives of people with Myasthenia Gravis, these pages will
provide insight into the effects of the disease, and the need for understanding. For people
with Myasthenia Gravis, reading about the experiences of these nine people will show that
you are not alone.
One powerful message is that there needs to be more awareness and understanding of
Myasthenia Gravis. There are other places to discover facts and figures, but this book will
help to improve understanding of the human impact of the disease. The final two chapters
provide heartfelt advice for people with Myasthenia Gravis and their families and friends.
I congratulate all those involved.
Professor Pamela McCombe
The University of Queensland
8. vii
7
Contents
Part One - Stories
Chapter 1 Jo, diagnosed at 50 10
Chapter 2 Geoffrey, diagnosed at 65 12
Chapter 3 Robyn, diagnosed at 47 14
Chapter 4 Catherine, diagnosed at 50 17
Chapter 5 John, diagnosed at 65 21
Chapter 6 Liz, diagnosed at 45 24
Chapter 7 Eileen, diagnosed at 68 27
Chapter 8 Scott, diagnosed at 64 30
Chapter 9 Ally, diagnosed at 20 34
Part Two - A guide
Chapter 10 Advice for those with MG 40
Chapter 11 Advice for friends and family of those with MG 45
Notes 48
11. 10
10
Jo
It has been more than 10 years since Jo was diagnosed with Myasthenia
Gravis. When her symptoms first began, Jo was an active 50 year old,
working in medical administration, with a passion for dancing in her
spare time.
The first signs of her condition were weakness in the arm and facial muscles. When hanging
washing out, she began to find the repetitive motion of lifting clothes above her head
would quickly leave her arms feeling very tired and weak. Although unusual, this symptom
alone didn’t trigger alarm bells. Real concern arose when, for seemingly no reason at all,
Jo’s facial muscles became tired and heavy, leaving one side of her face droopy and difficult
to move, particularly in the eyes, which she struggled to hold open. At one stage her left
eye would be droopy and her right eye would be fine, and then at other times, her right
eye would cause trouble. She compared her symptoms to being like Bell’s Palsy, which was
very frightening.
Jo’s friends and family were equally concerned about the source of these symptoms.
Thankfully for Jo and her family, the process of diagnosis was fast. When confronted with
the inability to hold her eye open, Jo quickly made plans to visit her eye specialist, who
almost immediately recognised the symptoms and was able to tentatively diagnose her
with Ocular Myasthenia Gravis, having had experience with the condition through other
patients. Jo wasn’t familiar with the condition, but it was comforting to have an idea of
what it might be and a name to attach to her previously mysterious symptoms. To ensure
Myasthenia Gravis was the correct diagnosis, the eye specialist directed Jo to hospital to be
tested.ShewassoonconfirmedMyasthenic,justafewweeksaftertheonsetofherinitialsymptoms.
While in the hospital, a woman from a Myasthenia Gravis support group who also had the
condition came to visit Jo and provide support, encouragement and information. Initially, it
was difficult being in the hospital, as most of the nursing staff had not heard of Myasthenia
Gravis, much less had experience nursing patients with the condition. Having a visit from
someone with shared experiences really helped Jo feel more at ease with her situation.
In Jo’s experience over the past years, doctors’ visits have become much easier. As the
research into and teaching of various uncommon auto-immune conditions including
Myasthenia Gravis has expanded, Jo feels the symptoms and treatment of Myasthenia
Gravis seem to be more widely understood.
Chapter 1
12. 11
11
Jo felt it was very helpful to read information about the condition and what to expect.
However, it was interacting with others who had experienced living with the illness that
provided Jo with the most insight into the condition. These interactions have also taught
her how best to cope with and help minimise the severity of symptoms, and provided Jo
with the comfort of knowing she wasn’t experiencing her challenges alone. The support
and guidance she received from her fellow sufferers while in hospital also encouraged Jo to
provide similar support for others who are learning about their condition and what to expect.
There is a warmth, kindness and steadfast positivity evident in Jo’s demeanour in the
face of her difficulties. Although there are days when Myasthenia Gravis makes her feel
like screaming, Jo refuses to let her life be all doom and gloom, trying to always look on
the funny side of life and channel her energy into building something positive from her
experiences by providing hope and encouragement to others.
Jo now has her symptoms under control by persisting with her medication schedule,
focussing on the positives in life and keeping stress to a minimum. She believes stressing
about your situation and illness will only aggravate symptoms and create more problems,
so she tries to always take each day as it comes.
Jo likes to maintain an active lifestyle. She still enjoys dancing without any problems.
Living with a chronic illness has become easier over time. Through her own experience
and the experiences of others, Jo has learned to work around and deal with the condition,
following the guidelines and looking after herself. Making sure she takes her medication
regularly and gets plenty of rest helps Jo keep the condition under control.
Every now and then her eye decides to have a sleep. Jo finds she is particularly sensitive
to bright lights, but she finds a way to not let it interfere. Since she would rather not sit
beneath any bright lights, she just places herself somewhere in the room to minimise any issues.
As well as being involved with others with Myasthenia Gravis, Jo also finds it a great help
to have the support and understanding of family and friends, and thinks it’s important they
stay informed about the condition so they can provide effective support.
“Interacting with others who had experienced
living with Myasthenia Gravis provided Jo with
the most insight into the condition.”
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Geoffrey
Geoffrey is a wonderfully talented and imaginative artist who was
diagnosed with Myasthenia Gravis at age 65. When he first started
showing symptoms of the condition, he was staying with a friend in
regional New South Wales. She had been busy spraying weeds with
herbicides, and Geoffrey helped her remove the poisoned weeds.
He thinks this excessive chemical exposure and some root canal
work may have contributed to the onset of the illness.
At first, it seemed funny to Geoffrey when his speech began to slur as though he was
intoxicated. He and his sister were meeting for lunch, and in the middle of eating, Geoffrey
found his tongue was doing something strange and he was struggling to push the food
around in his mouth properly. As a result of this weakness in his facial muscles, he also
began to lisp a bit.
Geoffrey made an appointment to see his GP, who diagnosed him with Myasthenia Gravis.
Despite having a diagnosis, Geoffrey’s condition quickly worsened. His doctor had directed
him to take Pyridostigmine to treat his symptoms, which was ineffective. Geoffrey felt he
had been given the impression there really wasn’t anything to worry about. He thought that
all he needed to do was take a tablet every day, and that although there was no chance of
a cure, the disease would be well managed. Because he didn’t understand the workings or
potential seriousness of the condition, he wasn’t particularly interested in being managed
initially, and waited too long to seek out more help. He overlooked how important it was
to get proper management until he was really sick.
All of Geoffrey’s facial and throat muscles were dysfunctional, so his difficulties with
chewing and swallowing worsened. Being unable to swallow resulted in dramatic weight
loss, which eventually left him at a low of 45 kilograms.
Beginning to realise the seriousness of the situation, Geoffrey sought the advice of a
physician, who encouraged him to see a specialist. Geoffrey moved to Brisbane and met
with a neurologist, who immediately directed him to the hospital to find an alternative
treatment plan and rebuild his weight.
Being unable to communicate freely at this time was extremely frustrating for Geoffrey,
particularly when he was in disagreement with medical staff about his bladder management
and was unable to effectively assert his needs. Eventually he was able to communicate
what he needed and have the doctor take action on this.
Geoffrey’s large family supported him in the hospital, bringing him things such as healthy
smoothies. Geoffrey was given an unpalatable diet of thick liquids at first, because he
couldn’t safely eat any solid food or watery liquids.
Chapter 2
14. 13
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Embracing the emotional support of family and friends helped Geoffrey stay positive. He
believes that for people trying to assist those with Myasthenia Gravis, love is the answer.
As long as they are actively loving that person, they are assisting them. Love involves being
open, uninhibited, speaking your mind and your concerns, and letting go of your fear of
being exposed.
Six months after his initial symptoms, Geoffrey’s medical management was sorted out
and his symptoms brought under control. He is now committed to six weekly intravenous
treatments to keep his symptoms under control. Geoffrey finds he no longer has any major
difficulties associated with the condition, and is hoping to extend the amount of time
between infusions to see how his body copes.
Geoffrey also experiences occasional flickering around his eyes which he believes is a
result of his Myasthenia Gravis, but hasn’t found this interrupts his life. In addition, he
has experienced occasional small blind spots in his peripheral vision which come and go
suddenly and randomly. His doctor isn’t sure if this is as a result of Myasthenia Gravis, but
it is an occurrence which only started after Geoffrey developed the condition.
Geoffrey has had the flu a few times since having Myasthenia Gravis, and finds it now
takes him much longer to recover from such illnesses, so he tries to take care of his body
with good nutrition and fitness. Geoffrey has always been a very fit and active person.
Despite some of the physical limitations any illness can present, he feels the condition has
not limited his activity levels since being stabilised. Early after his diagnosis, Geoffrey was
advised by a physician to remain active, and he has gladly heeded that advice.
One way in which Geoffrey achieves emotional and spiritual wellbeing for himself is
through meditation and awareness. When faced with physical challenges, it’s easy to forget
we are not our troubles. Geoffrey feels that if he gives his body room to move, while
keeping his mind active in a positive way, it helps him recover and not be weighed down
by his problems. Focusing on his breathing and listening to the way his mind works as
though he were an outside observer helps Geoffrey direct his thinking away from the fear
and conjecture his imagination creates.
Having a creative outlet has also been of great help. Geoffrey sometimes feels like he’s mad,
so he paints to release all the thoughts and emotions going on within his conscious and his
subconscious mind. Painting allows him to explore his own being, seen and unseen, as he
sits back and watches the magic of the creative world of well-being unfold.
“Because he didn’t understand the
workings or potential seriousness
of Myasthenia Gravis, Geoffrey wasn’t
particularly interested in being managed,
and waited too long to seek out more help.”
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14
Robyn
At the time of her diagnosis, Robyn was a teacher aide at a local
school, and a full-time mother of three energetic boys. She didn’t
feel particularly stressed maintaining this lifestyle, but it certainly
kept her busy. She enjoyed camping, four wheel driving, boating and
swimming with her family, as well as riding quad bikes to keep up with
her boys and their father when they went motorcycle riding. When she
wasn’t working or having fun with her boys, Robyn volunteered in her
community, assisting with events and helping with art shows, as art is
a great passion of hers.
One of Robyn’s sons was involved in a three day rugby carnival which required lots of
running from one field to another, making this a big, tiring trip. Robyn had just returned
to work following the carnival when her first symptoms presented. One night she was
eating at a restaurant with her family and was finding it very difficult to chew her steak.
When she was asked how her food was, she responded that it tasted great, but it was
extremely tough, like chewing leather. In hindsight, Robyn realised this wasn’t the case
at all. Rather, it was the great challenge of chewing that had caused her problems trying
to eat her meal. In response to this difficulty with chewing, Robyn thought she potentially
had a problem with her jaw, so she visited a physiotherapist who specialised in treating
temporomandibular joint dysfunction (TMJD).
Soon afterwards, Robyn’s whole body started to feel quite weak, and she was struggling to
smile and hold her eye open. Robyn’s first assumption was that she had suffered a minor
stroke, so she thought perhaps by working through it and rebuilding her strength, that
everything would improve, but it soon became apparent this was not the case. Family and
friendswerealsoconcernedshehadsufferedastroke,andwereworriedaboutthehealthimplications.
Robyn pulled up at work one morning and tried to reach for her bag, but couldn’t lift it.
When she tried to get out of the car, she realised that she didn’t have enough power in her
muscles. She called a friend to help her get out of the car and get to the doctor.
By the time Robyn got to the doctor, she couldn’t walk or talk properly, and she was
crying out of frustration at her inability to perform these small tasks. The doctor gave her
a blood test and told her to go home and rest because there was nothing wrong with her,
putting her symptoms down to stress. When she got home, her symptoms persisted and
she felt sure there was something more serious going on. When her husband got home he
immediately knew something was not right, and took Robyn straight to hospital.
Chapter 3
16. 15
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Robyn was in hospital for five days. A diagnosis of Myasthenia Gravis was confirmed and
a treatment plan was established. After being given Pyridostigmine, Robyn’s speech quickly
returned. She was relieved to have a diagnosis, but was also petrified, because she had to
have a thymectomy (an operation to remove the thymus). Recovering from the surgery was
made especially difficult because of the condition. It was often hard to differentiate between
symptoms resulting from the recovery process and symptoms resulting from the condition.
Robyn’s fear of going through the surgery meant the Myasthenia Gravis initially took a
back seat on the list of things to worry about. As such, Robyn found she underestimated
the severity of the symptoms. She expected to have some discomfort but not for the illness
to interrupt her lifestyle. She wasn’t fully prepared for how intense and over-arching her
symptoms would be.
Myasthenia Gravis is still a relatively new condition for Robyn, and her symptoms are
yet to reach a plateau. She still has ups and downs, and often finds her smile becomes
lopsided, her eye feels wonky and droopy, and that she has lost all power from her body.
This is particularly evident when performing repetitive tasks such as chewing, talking and
doing housework. Lifting things up leaves her arms and the back of her neck feeling like
lead. Sweeping the floors is now an exhausting task which now takes four hours, as Robyn
divides the task with regular rests and swapping between other tasks which use different
muscle groups. Robyn knows her limits and works within those parameters. She believes
it’s important to get plenty of rest. She won’t let anybody make her feel guilty for doing so.
Robyn is unable to work in her previous role but feels that if a more suitable, slow paced
job came up, she may be able to manage it. Although not emotionally concerned about not
being able to work, it bothers Robyn that she cannot contribute financially.
Going out to see people and do shopping also holds its own set of problems. Because the
muscles controlling her bowels are weakened, Robyn always has to be close to a bathroom.
In addition to this, symptoms such as her inability to articulate properly and her drooping
eyes often present themselves to those around her as drunkenness.
She has gained weight, because she is no longer able to exercise as easily or as much as she
used to. She tried exercise sessions with a personal trainer, but found the trainer wasn’t
understanding of her condition. Drawing, which she used to love to do in her spare time,
is also hindered, because it’s hard for her to hold on to a pencil for long periods of time.
Robyn loves the beach, and is still able to watch her sons swim, but has to remain on the
beach and stay well protected from the sun under a beach tent or umbrella, as she is on
medication which makes her very sensitive to sunlight. Robyn always keeps an umbrella
handy in the car.
Living in a very hot climate, Robyn also struggles with the exhaustion this can create. At
home, she has air conditioning in her bedroom so she can rest and escape the heat. Robyn
also spends a lot of time in the pool in summer, as her medication worsens her reaction to hot
weather by giving her hot flushes.
17. 16
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Although there are things Robyn can no longer do and tasks that are difficult to complete,
she has found other ways to occupy her time and bring herself enjoyment. She is a very
positive, bubbly person, and always tries to find the positive side of things. She does much
of her shopping online now, and having items delivered makes the process much easier for
her. She also enjoys spending time playing games, as well as taking time out for herself to
focus on relaxing.
A lasting positive that has emerged from having the condition is that Robyn now feels she
is bulletproof, no longer afraid of anything. She used to be terrified of needles, but since
she requires them so frequently, she has overcome that fear. Robyn is now confident she
can do and handle absolutely anything life throws at her. Her doctor has put her on anti-
anxiety medication, and she tends not to let things worry or upset her, rather just taking
each hurdle as it presents itself.
Robyn is grateful for her family’s support and assistance in everyday life, though she feels
people can sometimes be too eager to help and inadvertently get in the way. She suggests
it’s important for family to be informed about the condition and be sensitive to their needs.
Robyn sometimes finds it frustrating and belittling to be ordered to stop doing a small task
such as the dishes and go to bed instead. Even though she knows this is done out of love
and care for her, it can make her feel powerless and childlike. She feels it’s important to let
those with Myasthenia Gravis do things for themselves sometimes and help them regain
some control over their lives, while remaining open to being asked for help. At the same
time, Robyn feels those with the illness need to learn to accept the help offered to them.
Robyn believes it’s important to research the condition and to remember it’s not just the
person with the illness who is going through it. She has found significant support through
Facebook groups. These forums provide her with a way of connecting with others who
have shared experiences and allow her to ask questions. She finds carers have a lot to offer
in terms of advice and support too.
“Robyn believes it’s important to get
plenty of rest and won’t let anybody
make her feel guilty for doing so.”
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Catherine
When Catherine began showing symptoms of Myasthenia Gravis, she
was working night shifts as an enrolled nurse at a major hospital. She
would work nine hour shifts, drive home, take her daughter to school,
and then finally return home to get some minimal but well needed rest.
She would then collect her daughter from school. This meant she was
only getting five hours of sometimes broken sleep, five days a week.
A couple of weeks before her fiftieth birthday, Catherine was out with her family enjoying
an ice cream, when her speech began to slur. Soon after, she was enjoying a meal when her
speech slurred again. This time the problem lasted considerably longer. Catherine decided
she needed to see a doctor.
Catherine’s doctor sent her for a brain scan to check she didn’t have a blood clot or
tumour. The doctor was unable to diagnose her symptoms, which left Catherine
frightened. Catherine believes it is important to seek other opinions if you’re not happy
with your doctor or specialist.
In the meantime, her symptoms rapidly intensified. She lost a lot of weight because she was
unable to eat properly. When Catherine couldn’t chew, she would try to eat soft foods like
yoghurt and mashed banana. Often, she would put food in her mouth and be able to taste
it but unable to swallow it.
At night while Catherine was at work, she would often lose control of her speech and struggle
to keep her eyes open. Driving home from work early one morning, she had to physically
hold her eyes open and drive with one hand. It was at this point Catherine decided to leave work.
There were some days when Catherine struggled to get out of bed, even just to get to the
toilet. This difficulty in moving left her struggling to drive her daughter to school and look
after the house, so her in-laws came to help. Although at times she felt like a burden, in
hindsight, Catherine now knows it’s vital to embrace help when it’s offered.
Although friends and family were mostly very sympathetic and understanding, Catherine
was embarrassed by her symptoms, constantly feeling the need to apologise for not being
able to speak clearly. On occasion she felt as though people were talking down to her
because they thought she couldn’t understand them. This made her really angry and
damaged her self-esteem.
Chapter 4
19. 18
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Thankfully, three weeks after first showing signs of Myasthenia Gravis, Catherine’s husband
(also a nurse) tentatively diagnosed her. His diagnosis was confirmed by a specialist one
week later. By this time her arms, legs and neck were also becoming weak, she was having
severe breathing difficulties, and when she smiled she looked like she was snarling. The
specialist confirmed her husband’s diagnosis of Myasthenia Gravis, booked her in to have
a CT scan, tensilon test, blood test and to check for a thymoma (a tumor originating from
the epithelial cells of the thymus).
A thymoma was found and Catherine was booked in for surgery. In the meantime, the
specialist put her on Pyridostigmine three times a day, which helped for the first week,
but then her condition worsened. Catherine couldn’t roll over in bed, chew or swallow her saliva.
Unable to drive her daughter to school every day, and with her husband working long
hours, Catherine enlisted the help of her in-laws. They stayed with the family for three months.
Catherine’s specialist had never treated a Myasthenia Gravis patient before, and
was very concerned by her deterioration despite being medicated, so he referred
her to a more senior neurologist who had experience with the condition. This
neurologist immediately admitted Catherine to hospital, where she was put
on Azathioprine and high doses of Prednisone to make her well enough to have
a thymectomy. Catherine’s symptoms were greatly improved after the tumour was removed,
but her health fluctuated a lot over the next 13 years.
She has been hospitalised three times for Myasthenic crises, when she was unable to
breathe properly. Imagining the worst possible outcome, Catherine found it was very
easy to send herself into a panic attack, which compounded her problems. She believes
she made herself more sick by panicking and stressing instead of remaining calm. On
two of these occasions, after she was admitted to the hospital and put on oxygen, her
breathing quickly improved, even though her severe muscle weakness didn’t. On
the third occasion, her condition didn’t improve with oxygen, so the hospital gave
her Intravenous Immunogobulin to avoid sending her to the intensive care unit.
To cope with these frightening occurrences, Catherine tried to focus on her breathing. She
found this to be a calming activity which helped to alleviate her panic.
In recent years, Catherine has required cataract surgery as a result of prolonged steroid
use, and her bone density has to be closely monitored. She was put onto regular treatments
of Intravenous Immunogobulin in an attempt to stabilise her symptoms and wean her off
Prednisone. Since beginning these treatments, almost all of Catherine’s symptoms have
stabilised and now cause her little bother.
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Catherine had always lived a very active lifestyle and played a wide range of sports. After
becoming unwell and experiencing such severe and terrifying symptoms, she didn’t exercise
properly for 10 years because she was so afraid it would make her sick again. As a result
of not having exercised, she became breathless quickly when completing small tasks like
housework and shopping. When this happened, Catherine worried it was a symptom of
Myasthenia Gravis. Eventually, she realised her breathlessness and tiredness were due to a
loss of fitness. She began exercising and started feeling better, both physically and mentally.
The more she did, the less crippling her fear of exercise and her condition became.
Catherine thought she would never be able to walk around the block, let alone jog, or go
to the gym, but all of these things have become possible. There are times when she has to
listen to her body and slow down.
In addition to the constant fear, Catherine found she was often quite depressed, teary
and sensitive, easily upset by small things. She also felt as though her mental faculties
were impaired. This is one symptom she feels still hinders her. Particularly in the early
stages, Catherine found herself very insecure and lacking confidence as a result of her rapid
physical and mental changes. She often felt silly, and having always been very active and
proud of her body, her sudden change in shape as a result of medications and inactivity left
her feeling as though she had lost part of her identity. She suddenly felt as though she had
no control over anything, which added to her feelings of inadequacy.
The longer she has lived with the condition, the more Catherine has learned about different
coping mechanisms and how to use them. It wasn’t until she started exercising again that
Catherine felt as though she regained a handle on her life. Simple exercise and staying
active can have a dramatic effect on well-being. Having physical goals she could work
towards gave Catherine a sense of achievement which helped to restore her self-confidence.
Over the years, she has learned that positive thinking is vital to health. She tries to remember
that things could be worse, and surrounds herself with people who are caring but positive.
Initially, Catherine’s perception of Myasthenia Gravis was that she was going to die from
it. After this fear passed, she felt she would never get better, because she had deteriorated
so rapidly from her first symptom to having every conceivable symptom. However, over
time, Catherine found the more knowledge she gained about the condition, the easier it
became to cope, because she understood more.
“It wasn’t until she started exercising
again that Catherine felt as though she
regained a handle on her life.”
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In addition to exercise and positive thinking, using the internet and sites such as Facebook
as a tool to find support groups was extremely beneficial. Also, being able to ring a help
line was a big aid in the early stages, because Catherine didn’t feel so alone. She was able
to speak to people who had been there, done that and made it through. Having a support
network was an important part of holding on to her mental well-being.
Putting her thoughts down on paper with photographs was very cathartic and an important
coping mechanism. Scrapbooking and journaling allowed Catherine to express her feelings.
This helped her feel she would always be remembered, no matter what happened. It also
gave her a purpose, and was an activity she could do at home on days she felt unwell.
Catherine also kept an up to date and detailed medical journal which included details
about her physical state, medications, treatments and doctors. Due to her husband’s work,
she was required to move interstate regularly. Each time she changed doctors and states,
she was able to hand the doctor a short, chronological medical history. This journal also
allowed her to reflect upon how far she’d come since her last entry and find the positives
in her current situation.
Lack of sleep remains one of Catherine’s greatest enemies in controlling her symptoms.
When she hasn’t slept well or had enough rest, she becomes fatigued very easily. Now that
her symptoms are well controlled by treatments and medications, Catherine’s fatigue is far less
extreme. She uses an e-reader to read at night, helping to minimize eye strain and muscle fatigue.
When she was first unwell and couldn’t walk properly, to help with the depression of being
housebound, her husband bought a wheelchair so he could take her outside and walk her
down to the shops to have a coffee and enjoy the fresh air. The wheelchair also allowed
Catherine to continue to go on holidays.
Catherine has often felt like family and friends were embarrassed to ask about the condition
and her symptoms. This lack of communication made her feel isolated at times. She feels
it’s important for friends and family to show interest in a person with Myasthenia Gravis
and that they shouldn’t decline to ask questions for fear of being annoying or insensitive.
Sometimes, acquaintances gave her the impression they thought it was more of a
psychosomatic problem rather than a physical issue, because a lot of the time she didn’t
go out and see people unless she felt or appeared relatively well. Some of her symptoms
wouldn’t show up until night time, so she would go out in the morning when she was less
tired to avoid embarrassment. When people were dismissive of her symptoms, it was hard to
be around them, and those relationships were difficult to maintain.
At the same time, if someone with Myasthenia Gravis is struggling to speak, they are
probably very tired and trying to talk will wear them out even more. They may also be
embarrassed about the way they sound. Catherine thinks it is important for friends and
family to continue to visit and ask how people are feeling, but to also be considerate when
the person is struggling. It’s comforting to have company, but you may need to be prepared
to do most of the talking.
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John
John was 65 and nearing retirement when he first began showing
symptoms of Myasthenia Gravis. At the time, his work involved fixing
radios and navigation equipment on aeroplanes. He was planning to
continue working for a few more years. However, when he became
unwell, John decided it was a good idea to retire slightly early.
The first symptom John experienced was a droopy left eyelid, but it didn’t droop enough
to really affect his vision. The next thing he noticed was double vision. It felt as though he
was taking two copies of the same photograph and splitting them apart. John does a lot
of walking in the early evening to avoid the hot sun. The first time he experienced double
vision was on one of these evenings, when he realised there were a lot more stars than usual.
Following the trouble with his eyes, John’s speech began to slur. He didn’t even notice at
first, but his family could hear the labour in forming his words, and were understandably
concerned something wasn’t quite right. They thought John had suffered a stroke, because
the symptoms he was experiencing were very similar.
The signs of Myasthenia Gravis which had taken hold in the muscles in his mouth also
made themselves known in a difficulty in chewing and swallowing, making both eating
and drinking not only hard work, but an uncomfortable and dangerous task, for the risk
of choking. Of all the symptoms John experienced in these early stages, the only one that
still really affects him is the risk of choking. Solids don’t bother him, but drinking water
is a struggle.
Faced with these unexpected challenges and the concerns of his family, John and his family
decided to seek advice from his GP, who also theorised John had perhaps suffered a stroke.
Testing for signs of stroke, however, turned up negative, as did other scans.
Chapter 5
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Still having no insight into what was happening inside his body, an appointment was
made at a hospital for further testing. Because John showed all the classic symptoms, his
doctor was very quick to guess what those symptoms indicated, despite it being the first
case of Myasthenia Gravis she’d personally come across. John didn’t know anything of the
condition, and the only association with “MG” in his mind was the car. He had a friend
who had the condition, but it was only one of many health issues his friend had.
John’s son did some research online to find as much information as he could. Although there
was some very helpful information on the internet, there was also much misinformation.
John is now wary of information from the internet, because there is no guarantee it is from
a reputable source. In order to access additional and accurate knowledge, John contacted
a group of people who have Myasthenia Gravis.
John stayed in hospital for two days for testing and monitoring, to ensure no life threatening
complications arose. After the test for Myasthenia Gravis bore positive results, John was
given Pyridostigmine and instructed to take one before each meal. Within a mere half an
hour of his first tablet, John found almost all symptoms were gone or at least minimised,
which he was very happy about. From that point, he and his doctors just had to make
adjustments to get the dosage right. At first, the side effects of this medication were
significant, but over time John’s body adapted and it ceased to bother him so much.
John still found himself at risk of choking on liquids, but quickly learned to cope with this
setback. Around dusk and dawn when there is a fast transition of light, he also found his
double vision would reoccur, so he had to be careful driving, but it didn’t affect him too much,
as his wife was often the driver.
“As Myasthenia Gravis is a rare
complaint, it’s important to be
well versed in the condition and
treatment options, since the person
with the condition is often telling
the doctors what needs to happen.”
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His left eye also wouldn’t look down properly. Instead of looking down to read a book,
he had to bring the book up to his face to read because his left eye was slow to catch up
in the bottom half of his vision. John suspected he had probably lost the strength of that
eye for life, but in time it did slowly come back and allow him to read almost as normal.
For a while, the condition slowed John down while talking. If he spoke for too long he
would find people could no longer understand him, so he would take a break from talking.
John no longer needs to take Pyridostigmine. When he switched from this medication to a
very low dose of Prednisone, all his symptoms desisted except his tendency to choke very
easily. This is a nuisance, but he is virtually symptom-free aside from that.
Not one to dwell on emotional issues, and humble in the face of hardship, John considers
himselfveryfortunate,havingexperiencedwhatheconsiderstobeonlyveryminorsymptoms
which don’t severely affect him in his everyday life. He describes the illness as more of a
nuisance than anything else. Having managed to work out a medical management system
that is effective for his body, leaving him with few symptoms, John considers himself to
have had a relatively easy journey navigating his condition when compared with many others.
John finds he is now considerably less tolerant and easy going. He is borderline diabetic,
which he attributes to a side effect of the medications. He is particularly sensitive to loud
noises and high frequencies of sound. John is sensitive to bright light, but doesn’t have any
serious responses to bright lights in his vision. He feels these and many other symptoms
are more a result of prolonged treatment than Myasthenia Gravis itself. Despite the
bothersome things, John still enjoys an active lifestyle. He enjoys regular walks, just as he
always has done. He feels it is important for those who are newly diagnosed to know that
not all cases are severe or life threatening, and it can often be managed very thoroughly.
John has found great help through friends and family, and suggests people with the illness
ask for assistance when they need it, and not be afraid to tell people how they can help.
He encourages family and friends to also make themselves available for support when
required, but also not to push help on those with the condition, as at times that eagerness
to help can just get in the way. Communication is key in ensuring that people with the
illness are effectively supported and receive the right type of help at the times it’s most needed.
John also feels it’s very important to have the support of a good neurologist. It can be
a long, difficult process at times, since there’s no real forum specifically for locating an
effective specialist, so it’s important to be persistent in the search for good care. He feels
those with the condition should be wary of advice that steers them away from medications
which have proven effectiveness. As Myasthenia Gravis is a rare complaint, it’s important
to be well versed in the condition and treatment options, since often the person with the
illness is telling the doctors what needs to happen.
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Liz
Liz is a veterinarian with a very active, hectic lifestyle. At the time she
first began showing symptoms of illness, she was working long hours
in the country as a rural vet, owning and managing two practices,
while raising two boys.
The first indicator of her condition was breathing difficulties, which saw her admitted to
hospital. By morning her symptoms would desist and the next day she would capable of
returning to work.
A short time later, she moved to Rockhampton. This meant a change in her lifestyle,
working part-time in government and part time in private practice. Liz’s family life and
work were great. The first symptom of Myasthenia Gravis - severe double vision - then
emerged. The double vision was initially diagnosed as being caused by a small pituitary
tumour. It was extremely frightening, as Liz’s immediate concern was that she had an
aggressive brain tumour. To her relief, tests run on the tumour showed it was benign,
completely normal and not uncommon.
After this explanation for the double vision was ruled out, the process of diagnosing the
problem became much more complicated. Liz believes her long term stress levels and
persistent adrenaline-fuelled lifestyle finally caught up with her and took their toll on her
body in the form of an auto-immune condition at this slower period of her life.
It took more than four years and many unpleasant hospital experiences for Liz to receive a
correct diagnosis. She was finally diagnosed through Pyridostigmine testing. Liz had some
previous experience with Myasthenia Gravis as a veterinarian, having treated a dog that
was afflicted with it. However, since she hadn’t yet experienced drooping eyelids, she had
never connected her health issues with the condition. This diagnosis therefore came as
quite a surprise. It was a relief to finally know what was wrong and that it was something
she was familiar with.
Chapter 6
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The hospital began her treatment with Mestinon. However, unbeknownst to the medical
staff and much to their initial disbelief, Liz had the particularly rare MuSK form of the
condition, to which Mestinon is contra-indicated. The hospital had the results of her tests for
three months before finally confirming that Liz had MuSK. When the staff eventually read
the results and found she was MuSK, they tried Intravenous Immunoglobulin treatment.
Unfortunately, Liz reacted badly to this treatment too, so more tests were done and Liz
was given Prednisone. Her condition deteriorated rapidly after taking the Prednisone and
she was rushed to intensive care for treatment. Being no stranger to stressful situations
and medical emergencies, thankfully she was able to draw on her experience and approach
these situations calmly and without panicking
During one of her crashes, her doctors couldn’t determine what was wrong, Liz’s file being
“too thick to read”. It is for the medical profession to remember that the patient can
hear, feel and think during a myasthenic crash, whilst not being able to respond with any
muscular action to speak or show pain.
Seeking out better medical treatment, Liz began travelling to Sydney to see a professor
who had experience in researching and treating MuSK and MG, and working in the
first lab in the world to run the MuSK tests. It was extremely important to Liz to find
someone who believed her description of her symptoms. At this time, Liz was travelling
from Rockhampton to Sydney every three or four weeks for two Plasma Exchanges. She
was given a full exchange one day, and another exchange the next day before going home.
She trialed numerous medications, including Rituximab, Mycophenalate and Prednisone.
Due to changes in the interstate treatment allowance, Liz had to stop travelling to Sydney
for treatment so she moved to Brisbane to be closer for treatments. She is still on Prednisone
in addition to fortnightly exchanges. She finds kinesiology vital, while holistic Chinese
medications help her to remain stable.
Close relationships with friends and family have been essential in helping Liz stay positive.
When coping with negative experiences such as those in the hospital it is important to
accept the MuSK is there without it controlling her life. At such hard times, Liz remembers
she has her sons to hold herself together for. She also finds that in hard times, having close
friends to turn to helps keep her troubles in perspective and stay positive.
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“Find the positive in
the small things of life.
Cherish relationships.”
There are days when Liz feels tired and low, and she has learned to allow herself to be
upset at those times and not afraid to cry. She believes holding emotions in only creates
more problems and rather than a sign of weakness, crying can be a release.
Liz is now fairly stable on fortnightly Plasma Exchanges, no longer having issues with double
vision, though even a day longer than a fortnight without treatment is unmanageable. She
struggles greatly with her breathing towards the end of the fortnight, but will pick up after
her exchange. In the time between these treatments, maintaining her positive state of mind
and keeping busy is essential.
Most people around Liz don’t know she has a problem, and that’s the way she likes it. She
refuses to use her condition as an excuse or a crutch. She considers it vital to have a life
outside the hospital.
Liz decided to open and run her own practice as she had done for 20 years before the move
to Rockhampton. This allows her to earn a living while also determining her own work
hours and break times depending on what she is physically capable of doing.
Liz is adamant in her belief that keeping active helps maintain a healthy state of mind. She
believes a person’s antibody level will determine what they can and can’t do, but what they
do will not designate their antibody level.
As a result of her demanding lifestyle and her treatments, Liz has had two hip replacements.
Reactions to pain relief meant Panadol was her only analgesia apart from local anesthetic
for surgery. The combination of this and her condition means she finds it difficult to
exercise, and so has gained 30 kilograms since becoming sick. She finds it takes all her
energy just to get up and get going at times but a new home with a pool has provided
hopeful prospects.
At first, being very strong willed, Liz was in denial of her condition, not wanting to give it
any space in her mind. Eventually she learned to accept it as part of her life and rearranged
aspects of her lifestyle so she could live with it. She says it can be difficult not to let
Myasthenia Gravis get the better of you until it’s being effectively controlled by treatment,
but once that does happen, it’s important to push its power aside and regain control of
your life.
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Eileen
Eileen was enjoying retirement at age 68 when she first began
showing symptoms of Myasthenia Gravis. She enjoyed spending her
days crocheting, being creative in craft classes, working outdoors in
the garden and going out for regular meals with family.
Eileen’s first clue that something was amiss came when she began to struggle for breath
and felt extremely weak while getting in and out of the car. She had recently had a fall and
damaged her knee, which required her to use a walker. As a result, Eileen already found it
difficult to get in and out of her large car. However, on this day, the task was made even
more onerous by a sudden and severe shortness of breath. Much to her relief, by the time the
car was out of the garage she had managed to catch her breath. Such an occurrence wasn’t
too alarming for Eileen, as she had lived with asthma since the age of 11. In hindsight, Eileen
believes it’s possible some of the more severe asthma attacks she experienced in her later
years may have also been caused or at least aggravated by Myasthenia Gravis.
The following day, Eileen was once again met with a struggle while attempting to pull herself
into the car, but she remained calm, and a short way down the road she regained her breath.
Unusually, this pattern repeated itself, so a few days later Eileen went to see her doctor. After
listening to Eileen’s concerns, the doctor concluded Eileen was having small panic attacks.
The doctor reassured her, saying she just needed to relax, settle down and wait for the
breathlessness to pass. Eileen was comforted by the thought the problem wasn’t caused by
anything more serious than panic attacks, so she carried on with her life as usual.
One evening not long after, Eileen and her husband were on their way home from tea with
their family. As expected, while getting into the car, Eileen once more lost her breath. This
time, however, the problem persisted and was extremely severe. Eileen felt as though there
was somebody standing on her chest, clamping her lungs shut, not unlike the severe asthma
attacks she had experienced in the past, and she realised she didn’t have the strength to get
out of the car. Very frightened, she told her husband to call an ambulance to meet them at
home. Eileen can’t remember much of the events following this, as she lost consciousness.
She remained incapacitated while the ambulance took her to hospital, where staff attached
her to a ventilator. It took around six hours for her to regain consciousness.
Eileen stayed in the hospital for almost a month while doctors ran tests, including brain
scans and a gastroscopy to scan her stomach. Much to her frustration, doctors were unable
to determine the origin of her symptoms and insisted there was no physical evidence of
any problems, instead suggesting the cause was psychological. This was difficult and
frightening, not only for Eileen, but also for her family, who were shocked by her symptoms
and didn’t understand what was happening or how to help.
Chapter 7
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Disheartened by the dismissal of her symptoms, Eileen spent the next few months patiently and
cautiously enduring them without medical assistance. She was understandably quite scared of
a recurrence of the events that had led to her hospitalisation, so she ensured that every time she
got into or out of the car, she did so very slowly and with minimal energy expenditure.
Toward the end of that year, Eileen went to her haematologist for a scheduled visit and
blood test related to her diabetes and anaemia. She told him about everything that had
been happening and he asked what was being done to help the situation. Eileen told
him her doctors had concluded the problem was all in her head, so no action was being
taken. When she returned to the haematologist for her follow up appointment early in the
new year, she was met with quite a pleasant surprise. The haematologist was confident
Myasthenia Gravis was the cause of her problems, informing her it was an incurable but
treatable condition.
Eileen had never heard of Myasthenia Gravis before. Knowing she had a rare and unfamiliar
condition was overwhelming. But it was also a relief to be able to put a name to it, know
it was treatable, and to have a starting point for combatting her symptoms.
Eileen was referred to a neurologist to confirm the diagnosis. He provided her with
brochures explaining the condition, as well as the number of a person who could send
additional information.
Eileen was then sent to hospital for 10 days to stabilise her symptoms and establish a
suitable treatment plan. While in the hospital, she was unable to eat solids because she
couldn’t swallow properly. She couldn’t move her tongue to talk properly, and her eyes
were very difficult to open. This was horribly frightening for her, because it was so out of
her control. Eileen was devastated, battling depression and seemingly in tears for days.
Due to her diabetes, particular caution had to be paid to the types and quantities of
medications Eileen was given. Her doctor’s initial preference was to trial her on the
immunosuppressant Azathioprine and intravenous treatments. However, at the hospital,
she was first given the anticholinesterase treatment Pyridostigmine to try. Her doctor
quickly put an end to this in favour of Azathioprine, as the Pyridostigmine had severe
effects on her bladder and bowel control. Eileen has continued taking this medication in
addition to having regular monthly treatments at the hospital.
Eileen has found her limbs become heavy and her upper body becomes quite limp in the
few days before her monthly treatment. This causes her great difficulty lifting and carrying
things. In addition, the combination of her asthma and the breathing difficulties caused by
Myasthenia Gravis creates issues. Eileen regularly feels quite wheezy. When particularly
weak, she is required to take Prednisone to get her through the days until her next treatment.
In order to combat this, her doctors initially tried increasing the Azathioprine dosage. This
was ineffective, so the time between regular treatments was reduced from four to three weeks.
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Living in a hot, humid climate means it has been vital to Eileen’s comfort and health to have
air conditioning and fans. In the last four or five days before treatment, she often feels as
though she could sleep 24 hours a day. During these times, she always keeps the house as
cool as possible to minimise the negative effects the weather has on her physical condition.
Eileen is now confined to a wheelchair, which was a very big change to cope with. She uses
a motorised wheelchair at home. Because this chair doesn’t fit in the car, when she goes
out, Eileen’s husband has to push her in a pushchair. Eileen is immensely grateful to have
a wonderful husband whom she can depend on. This has helped her to cope emotionally
with such a dramatic change in her lifestyle.
Eileen believes friends and family need to be sensitive to those with the condition even
though it’s hard to understand what they’re going through. Since people often can’t see the
physical symptoms of the illness, they forget there is something wrong, or can’t understand
the seriousness of it.
Eileen joined the local Myasthenia Gravis support group, which meets every three months.
She finds this support network helps to alleviate some of her own concerns and remind her
she is not alone. Eileen takes anti-depressants, to ensure she remains emotionally equipped
to look after herself physically.
Despite her limitations, Eileen still maintains many of the pastimes she enjoyed before
she became unwell. She can’t garden like she used to, but still enjoys getting outside and
doing the watering occasionally. Myasthenia Gravis has not hindered her crocheting or
attending craft classes. Eileen and her husband still enjoy regular meals out with family.
Eileen embraces the notion that if you’ve got Myasthenia Gravis, there’s nothing you can
do to change it, so embrace what you have and just continue to do as much as you can.
She finds there is always an underlying fear she will have another Myasthenic crisis, and
often feels as though she needs to walk on eggshells and remind herself not to panic.
However, over time, the condition has become less frightening. She recognises everyone’s
emotions are different, so it’s hard to share advice on how best to cope with the emotional
strain of having an incurable condition, but sharing the burden of her fear with others who
endure similar difficulties is always helpful.
“If you’ve got Myasthenia Gravis, there’s
nothing you can do to change it, so just
continue to do as much as you can.”
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Scott
Scott was a permanent US citizen who had recently arrived in
Australia. He was experiencing dramatic changes in his life in the
US when he became unwell with symptoms of Myasthenia Gravis.
He has also experienced changes as a result of the condition.
Scott was a licensed psychotherapist who had worked in the substance abuse and addiction
field for 30 years, He had also taught at the Masters level at university for three years.
Having worked in these fields for many years, Scott was no stranger to a busy lifestyle and
the psychology of dealing with the emotion of difficult situations. He had happily retired
from his work in mental health because his position was very stressful.
Despite his recent retirement, at that point in his life, Scott was presented with far more
stress than he ever expected. It was not long before his retirement that he met the woman
who is now his wife. She was a dual American/Australian citizen. They decided they wanted
to go back to Australia together, so Scott applied for a permanent residency visa.
This was a big decision for Scott, who was in a very comfortable position in America at the
time. Moving meant selling, giving away and donating a lifetime of acquired possessions. To
make the transition even more difficult, Scott was advised he was ineligible for a permanent
residency in Australia unless he was married to his partner. Since neither of them wanted to
give up their plans to be together, Scott and his partner decided to get married.
Three months before receiving his temporary residency and moving to Australia, a fire
broke out in Scott’s Californian neighbourhood. The fire burned right to the fence, so
Scott was concerned he would lose the house he was trying to sell. Thankfully, his property
was spared, but the stress of the situation was intense.
Ten days after the fire, Scott was out on a long drive. When he was still two hours from
home, he started experiencing double vision. His walking was also impaired by his double
vision, because he couldn’t tell where his feet were going or even where the ground was.
Worried about why this had happened, Scott made an appointment to see a doctor (his
regular GP was away), who referred him to an ophthalmologist. The ophthalmologist’s
initial fear was that Scott had suffered a stroke. Tests revealed a stroke was not the cause
of Scott’s symptoms, but this left him no closer to a diagnosis.
Chapter 8
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Thankfully, Scott’s family doctor soon returned to work. He was familiar with Myasthenia
Gravis, and quickly diagnosed it. He referred Scott to the best neurologist in their small
town, who was then able to confirm the diagnosis.
Scott’s partner was shocked and concerned when she heard about his diagnosis. This was a
condition she was familiar with through a neighbour and friend from Australia. Her only
experience with the condition, however, was of its fatal form.
This news, of course, was also terrifying for Scott but he was thankful to have his life
experience and philosophy behind him to help temper his personal fear. He knew it was
okay to be concerned, but that he needed to trust the process.
Scott’s fear was not only for himself. He was also worried that his partner would be left as
his caregiver and forced to watch him deteriorate. Scott’s partner knew she wanted to be
with him regardless of his medical situation, and so they were married.
A month later Scott received his temporary residency, and he and his wife began preparing
to move. Scott did further research into the condition and was relieved to find it was mostly
very treatable now, and not necessarily fatal. The more he learned about the condition, the
more positive he felt about the situation. He used the internet to acquire all the knowledge
he could, and was happy to learn that symptoms could be controlled and that remission
from symptoms was even a possibility.
Scott also went online to find information about people in Australia with the condition.
He found a support group in Queensland (where he was moving to), and initiated contact
with the group.
Arriving in Australia, Scott began establishing medical support in his new country. In
America, he was treated using Mycophenylate, a drug commonly used in organ transplant
patients as an anti-rejection medication. He took this up until the time of his move, and his
condition had become reasonably stable on it.
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In Australia, Scott’s neurologist was unable to provide him with a script for his usual
treatment. He weaned Scott off the Mycophenylate, but when his treatment with this
drug ended, Scott’s system fell into disarray and he became very sick. In desperation, Scott
visited a general practitioner who put him on Prednisone. This had bad side effects, but
he was at least able to see once again. As a result of his lack of coordination, Scott was
constantly at risk of falling over, and the Prednisone made him bleed very easily whenever
he did fall.
Scott continued his contact with the support group and started going to meetings.
Serendipitously, at one of these meetings, a neurologist was attending as a guest speaker.
Scott was able to talk to the neurologist about his situation, and much to his relief, the
neurologist was enthusiastic about taking Scott on as a patient. This neurologist changed
Scott’s medication regime and since then, Scott’s condition has progressively improved. He
is not yet able to do all the things he enjoyed before becoming unwell, but he is hopeful
and confident that as time passes, he will grow stronger and be able to return to a more
normal lifestyle.
Scott now finds his mental faculties are not as sharp as they were, and there are some other
physical changes to Scott’s life that he has had to come to terms with. There were activities
that he loved to spend his time and energy on that he is no longer able to do, or cannot
pursue to the same extent he once did.
Scott started going to the gym to begin rebuilding his strength and improving his balance
so he can start motorcycle riding again. He doesn’t expect to have the same endurance he
once did, but has come to terms with that prospect, and knows that just getting back on
the bike will be a great victory.
Scott has taken up volunteer surf lifesaving, and although he doesn’t have the physical
stamina to rescue people, he enjoys being able to assist on the radios. Scott ensures he
provides information about his condition to anyone who may need to know, including
those he works with in lifesaving and at the gym. This keeps them informed so they will
know what is happening if there are any complications.
Scott believes it’s important to have an incentive to work toward when dealing with the
setbacks of illness. He tries not to fall into a pattern of worrying that his condition is
getting worse every time he has a bad day. The more active he becomes, the more positive
he feels about his situation.
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Learning how to deal with depression is another lesson he considers vital when dealing
with an incurable illness. Knowing about depression means the symptoms are recognised
and coping strategies are used. On the days when he can’t do much of anything, Scott
tries to hold on to joy wherever it comes from, and however small.
For a short time, Scott became involved in the committee for the support group he was
in contact with, but it soon became clear he wasn’t ready. In all the busy months leading
up to the move to Australia, he hadn’t had time to come to terms with his illness. This
was a significant lesson for Scott, who was accustomed to providing support for others.
He now understands the importance of taking time to make sure you’re in a good place
mentally, emotionally and spiritually before committing to helping others.
The support of friends and family has also helped Scott to cope with his changing
situation. Scott believes it’s important for family and friends to educate themselves about
Myasthenia Gravis through the internet, doctors and friends, not through the person
who is the Myasthenia Gravis patient. Having information and understanding about
what someone is going through is paramount to maintaining a relationship with the individual.
Scott also suggests friends and family acquaint themselves with how to support someone
who is tackling depression and loss. There is physical and mental deterioration, loss of
friends and structure. It’s also important for friends and family to know how to cope
with their own feelings of being held back. Their lifestyle may have to change in order to
accommodate the person with Myasthenia Gravis, so they need to know how to cope with that.
Scott gets sad once in a while, though he’s not always sure if it’s illness, old age or both,
but he does the best he can and enjoys every day. He knows that if he is good to himself
and does the right thing with his medication, food, exercise and moving, it will help him
not to give up. He knows the importance of being happy with himself and making the
best of life.
“Scott used the internet to acquire
all the knowledge he could, and was
happy to learn that symptoms could
be controlled and remission from
symptoms was even a possibility.”
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Ally
As a teenager, Ally enjoyed living an active, healthy lifestyle, eating
well, running regularly and socialising. She finished high school and was
working three jobs. She was planning to work as hard and as much as
she could for a few years so she could buy a house and a new car and
enjoy the independence these would bring.
Ally had contracted swine flu as a teenager and this left her body struggling to fully recover.
The combination of her immune system being knocked down and being pumped with
medications left her very susceptible to a wide variety of viral and bacterial infections,
including an eye infection which slightly damaged and weakened the muscles in one eye.
A few months after beginning full time work in a chiropractic clinic, Ally began to develop
symptoms, which at the time, she thought were the bizarre results of her body’s healing
process. Unfortunately, however, these symptoms continued to worsen. She found that her
left eye was growing tired and weak. When trying to communicate with clients at work,
she would think she was smiling at them, only to have them look at her as though there
was something wrong with her face. As a result of these reactions, she began looking at
herself in the mirror and realised that while she thought she was smiling, her mouth wasn’t
actually smiling.
These early symptoms soon began affecting her upper body. When hanging washing out
one day, Ally got her arms to a certain point above her head and they began to shake. After
a short while, her arms went completely numb and collapsed. It was only when this started
happening that Ally decided she needed to speak up about her symptoms at work. At the
end of her shifts, she was growing very weak, and would have to slow down her speech.
She was very confused and scared and felt quite insecure. Not knowing what was happening
within herself was unsettling and Ally started to lose trust in herself. Her illness got to the
point where she was sitting down at work all the time, and she soon realised she had
developed a waddling gait, her legs compensating for her condition and preparing her to collapse.
At this time, Ally had three jobs. She dropped back a few hours from her full time work
to compensate for her weakness, but needed more work, so she started helping people
out with additional jobs, eventually burning herself out. She was getting up early every
morning and dragging herself to work. She had a supportive partner who quit his job
and dedicated himself to looking after her. He got up and dressed and washed her, made
breakfast, drove her to work and picked her up.
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The chiropractor Ally worked with advised her to see a neurologist so Ally made an
appointment with her GP to get a referral. This GP believed her symptoms were likely the
result of post viral chronic fatigue from the swine flu and numerous infections Ally had
suffered. He advised her to do plenty of exercise to rebuild her muscle mass. When she did
this, her symptoms extended beyond her face and upper body, riddling her legs and then
her whole body. She was left bed ridden for months.
Ally had tests run by neurologists for various neuromuscular conditions including multiple
sclerosis, but no-one could pinpoint the cause of her symptoms. She began to feel like she
was going insane, with specialists turning her away, telling her to see a psychologist. A
number of acquaintances in Ally’s life also suggested her symptoms were perhaps all in
her head, so Ally began to doubt herself and lost a lot of confidence. At age 20, one year
after her initial symptoms, Ally was given a blood test, and her antibodies revealed she had
Myasthenia Gravis.
When the specialist gave her the diagnosis, Ally remembers tilting her head to the side
like a confused puppy. Her mother had to ask the doctor to repeat himself. The specialist
gave Ally a sheet of paper describing the condition and current treatment options. Ally did
more research on the internet but feels it was a mistake to read this information without
knowing if the source was reliable. Much of the information on the internet was very
negative, confronting and overwhelming.
Ally unsuccessfully searched bookstores for insight until she was fortunate enough to find
a Facebook support group. Through that forum, she was able to interact with others
who have experienced living with the condition. Talking to others, hearing about their
experiences, journeys and treatments, how they cope, what does and doesn’t work for
them, has helped Ally the most in learning about her condition. She found these interactions
informative and inspiring.
After she was diagnosed, Prednisone and Mestinon were prescribed and CT scans were
done on Ally’s chest, which indicated that although she didn’t have a thymoma, her
thymus gland was enlarged and an odd concave shape. She was rushed to hospital for an
emergency thymectomy, because the condition had reduced her lung function by half due
to the muscle weakness.
Ally felt very isolated from everyone around her. She was puffed up from steroids, her face
and body were totally bruised, and she couldn’t walk or talk properly. She was also unable
to stay up for more than three hours at a time without needing to sleep. She felt very alone
in her struggles, unable to do all the things her friends were doing. Ally found her dignity
and her self-esteem were damaged.
After surgery, Ally weaned herself off the Mestinon and began lowering the Prednisone.
She wasn’t feeling great, but her health was improving. Unfortunately she began to relapse
and had to increase the dosage of Prednisone and use Mestinon again. Her doctors
suggested Ally try an immunosuppressant and Intravenous Immunoglobulin, which she
has been taking ever since, having infusions two days of every month. This treatment in
combination with Prednisone, gave Ally the control she needed to relearn to walk, talk and
drive, and has allowed her to go back to work.
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Ally finds that while her good days aren’t the best she’s ever had, she no longer has any
really bad days, and attributes many of the problems she faces on her bad days to anxiety
and general muscle weakness than specifically to Myasthenia Gravis. If she’s ever tired,
sick or just has her menstrual cycle, sometimes her eye grows weak and heavy, but she no
longer suffers from really severe symptoms. She and her neurologist are hopeful that Ally
is on the road to remission and have started reducing her steroid treatment once more. They
hope to wean her off other treatments to see how her body responds.
Ally has been unable to run for some time, which has been hard for her. As a side job, she
used to make silk flower bouquets, and had to stop doing this as it involved a lot of fine hand
and finger movements, which she now struggles with. She is still able to enjoy spending time
with friends and eating out.
Ally finds she is anxious and terrified about the possibility of a relapse, and at times doubts
she has the strength or wants to have the strength to fight symptoms that were as severe
as those she once had. Trying to trust her body and that she is safe is the most difficult
mental battle she now faces. Ally knows many of these fears are aggravated by the steroid
medication, while also accepting it’s perfectly normal and acceptable to be anxious and
stressed in her situation.
She is a very positive person and is grateful for life and for everything our bodies can do.
Looking back on her experiences before diagnosis and during her recovery from surgery,
Ally can see how much progress she has made, having had to learn to do basic tasks again.
She feels her journey with Myasthenia Gravis has been filled with learning, and now finds
herself really positive about everything.
Ally’s family have been an incredible support to her throughout her illness. At first, Ally
thought she could deal with everything alone. She had to learn to ask for help, and once
she opened up about her symptoms, Ally’s mum was incredible. Ally’s Auntie has also been
a constant support and provided her with immense comfort, attending every infusion with
Ally to keep her company.
Ally has lost a few friends along her journey. Many of her close friends, though very
supportive, couldn’t understand her situation. This disconnect meant Ally isolated herself
from others. It was humiliating for her to not be able to wash herself, go to the toilet by
herself, or be unable to stop when you go to the toilet.
Ally feels it’s important for family and friends to remember to be patient. She understands
it must be frustrating, but emphasises how vital it is to have patience, because those with
Myasthenia Gravis are trying as best they can. Providing love and security is also incredibly
important. Living with a chronic illness can be a terrifying experience, so it’s important to
know there are people to care for you and keep you safe if anything goes wrong.
Being a very independent and determined young woman, Ally sometimes found it difficult
to ask for help, and occasionally attempted tasks that were a little out of reach. She kept
trying and didn’t give in, but soon learned to allow people to help when she was struggling,
as well as to ask for assistance.
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Ally has started seeing a psychologist. During the hardest few months, she was physically
and emotionally exhausted. In this period she grew very isolated, and would go to sleep
fearing she might not wake up. Her chest would feel heavy and her breathing was shallow
and laboured. At that time she found herself feeling depressed and didn’t always know if
she even wanted to wake up the next morning. Seeing a psychologist has been an important
step toward regaining her sense of self in the face of these experiences.
There are still days when Ally feels she hasn’t fully comprehended that symptoms of
Myasthenia Gravis could be for the rest of her life, but she refuses to let a condition define
who she is. She hasn’t quit her jobs or changed her life so the condition can live within her,
and she hasn’t given in to it.
Ally believes it’s vital to listen to your body and to trust it knows what it’s doing. It’s
important to learn to recognise when you need help and to not be afraid to ask for it, but
also to know you are strong enough to get through any challenge you face.
Since having Myasthenia Gravis, Ally has found a greater appreciation for life and being
able to wake up, breathe, smile and laugh. She takes great joy in helping others who are
struggling, and has channelled her experience into passing on what she’s learned. Inspired
by a very young member of the support group on Facebook, Ally organised a ‘Music on
a Mission’ event where she enlisted local artists to play. The event raised awareness and
more than $2000 in donations for brain research, as well as encouraging many people to
donate blood.
Ally was motivated by the desire to help even one other person, especially after meeting
a four year old girl with the condition. She was unable to comprehend how such a small
child, without yet having any knowledge about life and her body, could endure all of the
things that she had felt. The hope that she can somehow help and inspire that little girl and
others like her drives Ally to stay positive and keep fighting.
“Ally knows many of her fears are
aggravated by medication, while
also accepting it’s perfectly normal
and acceptable to be anxious and
stressed in her situation.”
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Advice for people
with Myasthenia Gravis
The nine people telling their stories in this book offer the following
advice and suggestions for those diagnosed with Myasthenia Gravis.
Educate yourself and stay informed.
Thoroughly research your condition so you know what to expect from your symptoms
and how they may affect your lifestyle. Finding out you have an incurable condition is
a frightening thing. One of the greatest barriers to recovery is fear and one of the most
burdensome fears is the unknown.
Seek out knowledge and answers to your questions.
Whether this is through doctors, medical books, reputable internet sources, helplines or
support groups. Spending time with others who have the illness can also teach you things
about the condition that you didn’t know. The more you learn, the less frightening and out
of your control Myasthenia Gravis will seem.
Be prepared to work around symptoms.
There will be times when you may not feel capable of doing the things you normally
would. If you love to read, but sometimes struggle to hold a heavy book and turn the
page, use an e-reader when you’re unwell. Likewise, if you love to go out for walks or go
travelling, but aren’t always capable of walking around, consider buying a wheelchair to
use should the need arise.
Be equipped to cope with your environment.
If you live in a hot climate, it can be vital to have effective cooling systems in your home
such as fans and air conditioning.
Similarly, if the medication you have been prescribed makes you prone to hot flushes or
sensitive to sunlight, always be prepared to combat these, by keeping an umbrella handy,
or making sure you are somewhere with effective methods of cooling.
Keep a medical journal.
It is easy to forget who all your doctors were, what treatments and medications you have
been on and how you reacted to those things. When speaking with a new doctor or moving
to a new place, it is important to have knowledge of these things. Creating and maintaining
a simple but detailed medical record can make these transitions much simpler. Having a
record of your physical progress can also provide you with hope, being able to see how
much your condition has improved over time.
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Be persistent in seeking good medical care.
It is vital to have a good rapport with your doctors and an effective medical support system.
If you aren’t entirely comfortable with your doctors, feel they aren’t listening to your needs
or are unable to provide you with appropriate care, seek out others who can. Whether you
have ocular, generalised or MuSK Myasthenia Gravis, make sure you are confident you
are receiving the best possible treatment for your specific symptoms and that your doctors
have knowledge they are eager to build on. This is not only important for your physical
wellbeing, but also your peace of mind.
Give yourself time.
Working out an effective treatment plan takes time, as does regaining control of your
symptoms once these treatments are in place. Try to be patient and positive. Don’t lose
hope when you’re struggling and it feels like you are never going to improve, because time
is often one of the most crucial elements of feeling better.
Care for yourself physically.
Taking care of yourself physically by exercising and eating well can help keep your body
and mind healthy. Don’t be afraid to experiment with nutrition and exercise to find what
works for you. Often, the more we exercise, the more energy this generates within our
bodies. Staying active and using our bodies as much as we are capable of helps our health
and can aid in recovery.
Remain active.
After experiencing debilitating physical weakness, it can be difficult and frightening to
engage in many activities such as exercising, working, or pursuing interests. Remaining
physically active, not necessarily through exercise, but continuing to live daily life as
normally as you are capable of, can help you to take control of your illness rather than
letting it control you, aiding in your physical and mental recovery.
Find a goal you can work towards.
If you no longer have the strength and balance to do something you love, give yourself the
goal of one day being able to do it again. Devote time to working on your strength and
balance so you can find happiness and hope in the progress you make.
If you devote your energy to something you’re passionate about, you may not be as inclined
to dwell on your illness. Avoiding activity can sometimes hinder emotional recovery.
Having a responsibility to focus on, one that requires you to get up out of bed, can help
you to stay positive.
Maintaining a positive attitude in the face of adversity can be greatly assisted by continuing
to do the things you love as best you can.
Listen to your body.
Make sure you know your body and learn to recognise your limits. Know the signs of
fatigue associated with Myasthenia Gravis and respond accordingly. This may mean
taking a break and returning to a task later on. Try to find a compromise that allows you
to continue doing what you love while allowing you the freedom to pace yourself.
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Ensure you get enough rest.
Getting sufficient rest is an important part of living with the condition. Don’t be afraid to
take time out to look after yourself and relax and don’t let anybody make you feel guilty
for doing so, least of all you. You will have days where you aren’t well. Take it slow, take
time to recover and live your life. Once you are able to, dust yourself off and continue
working toward your goals.
Care for yourself mentally and spiritually.
Whatever it may consist of, holding on to your personal belief system in times of struggle
can bring great comfort. It is easy to lose sight of who we are in the face of our troubles.
We can find ourselves lacking in self-esteem as a result of losing so much of what we feel
makes up our identity. A belief system, being intangible, can be a solid foundation for identity
that cannot be lost through physical means.
Try to stay positive.
It is important to encourage positivity and not dwell on fear and negativity. Spend time
reflecting on your beliefs, meditate, work towards a goal and spend time with loved ones.
Actively pursue the things that encourage positivity in your thoughts, whatever they may
be. Trying to seek out positive consequences of your illness, perhaps in personal growth or
providing you with an opportunity to assist others, can also be helpful in coming to terms
with the presence of a chronic illness.
Be flexible.
Sometimes it is necessary to compromise in order to do what is best for your body, whether
that be in location, work or hobbies. Make sure you are able to get the type of assistance
you require. Don’t demand more of yourself than you’re capable of. Being flexible may
also mean learning to accept advice, even though the first instinct may be to ignore it in
preference to holding on to independence.
It’s okay to cry.
Release your emotions. You are likely to be faced with hard days, so don’t be afraid to
express how you feel. Holding your emotional problems in is likely to create more.
It’s okay to be afraid.
Particularly in the early stages of dealing with the condition, fear can be a difficult thing
to overcome. Remember that with time comes greater understanding and acceptance and
with these two things, your fear will gradually fade and become easier to bear.
Although fear is natural, try not to let it consume you and prevent you from doing things
you enjoy. Fear can be debilitating and detrimental to self-esteem when we allow it to
control us. It can stop us from staying active and make us lose touch with our identity. Set
yourself small, achievable goals that will lead you to overcome your fear and give you a
sense of victory over your illness.
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Rediscover and hold on to your identity.
It can be easy to lose sight of who you are when your body restricts your activities and
leaves you lacking in confidence, so remember: you are not your illness. You are not defined
by your physical limitations. Take time for yourself, rediscover who you are and know you
are not limited to the trials you are presented with. You aren’t defined by your body, but
the person you are inside that body.
Find activities you enjoy and can safely involve yourself in.
If you can’t leave the house and are lacking strength, it may be helpful to pursue a creative
outlet such as art or scrapbooking, expressing yourself through words and pictures.
Journaling can be a cathartic process, allowing you to release emotions in a safe and
personal way.
Don’t stress.
Try not to worry about tomorrow and stress over what is out of your control. Stress can
make your problems balloon both physically and mentally, so try to take life one day at a
time, don’t take life too seriously and enjoy the good things.
Find joy in the small things.
Find joy in the small things in life such as relaxing with a cup of tea, appreciate being
able to laugh, talk, spend time with family and friends and love others. Hold on to these
positives, being grateful for what you have rather than dwelling on what you’ve lost, so
your negative circumstances don’t overwhelm you.
In the meantime, find a way to turn your negative into a positive. This may involve using
your experience with the condition to help others. Being able to provide advice and support
not only helps them, but can help you to feel good about yourself and make the best of a
bad situation.
Illness can be a good opportunity to reassess and realign lifestyle habits that are harmful or
unhelpful and find new, healthier habits. Illness can also allow us to become reacquainted
with our vulnerabilities as an essential part of our humanity. This can help us to achieve
personal growth and feel better about our situation and ourselves.
Help yourself before you help others. Give yourself time to come to terms with Myasthenia
Gravis. An incurable condition is a big lifestyle change to accept and helping others with
the condition is a big responsibility. Every time you talk to someone about their struggles,
it will remind you of your own struggles. It’s important to ensure you have come to terms
with your journey and the emotions it produced so you don’t withdraw each time you are
reminded of it.
Embrace support.
Allow your friends and family to help you when you are unwell and be open to their advice.
It is easy to fall into habits of self-reliance, but opening yourself up to advice and support
can be the difference between sickness and recovery. Make sure you do ask for help when
you need it and be specific about how your friends and family can help you without them
being overbearing. Asking for help isn’t the same as giving up. You are strong and capable,
but everyone needs a little help sometimes.
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Cherish relationships.
Your friends and family are part of a vital support network. They can care for you in
difficult times, help you to find perspective and remain positive. Cherish these relationships
and help them to stay strong and grow further through effective communication.
Surround yourself with people who love and care for you.
Being surrounded by the people who care for you will help you to cope with the daily
physical and emotional struggles you face. Knowing you have people around to support
you in any challenge can greatly help you on your journey back to health. You may also
find comfort in having a suitable companion pet to provide a source of unconditional love.
Find a support network.
Finding others who understand what you’re going through gives you a forum for alleviating
the burden of your fears and sharing the weight of your trials. Being part of a local group
such as the Myasthenia Gravis Association of Queensland allows you to communicate
with and enjoy the company of others who truly understand what you’re going through.
Sharing stories, fears, knowledge and advice can help you to remain positive.
Research the condition.
The internet can provide forums where you are able to meet people from all over the
world who are struggling with the same condition and similar symptoms. Being a part
of a support network can also help you to stay informed and up to date on new theories,
treatments and discoveries about the condition.
Recognise depression and loss.
Familiarise yourself with the symptoms of depression and learn how to cope with your
feelings. It’s important to take care of your mental, emotional and spiritual health. Being
isolated, struggling with debilitating symptoms and losing your identity can trigger
depression. Don’t be afraid to speak up and seek help. It’s difficult enough to recover
physically without having to deal with emotional difficulties on your own.
Remember you are strong enough.
You are the one who is living with the illness on a daily basis, you are the one who is
surviving and you are strong enough to make it through any challenge presented.
Be proud of yourself.
You may be facing great difficulty that many people will never fully comprehend. It’s an
achievement to wake up and face each day with bravery despite the fear of living with
Myasthenia Gravis. Be proud that you are here, you are strong and brave and that you are
who you are.
Have hope.
Don’t give up on your goals. Believe you can achieve them if you keep working persistently
and remind yourself of that when life and your illness is a struggle. It’s okay to have days
where you feel sad and frustrated because you can’t do something, but have hope that
things will continue to improve and that you will one day achieve your goals.
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Advice for friends and family
Following are tips and advice for the people involved in caring for
someone with Myasthenia Gravis. The information was provided by
the people telling their stories in this book.
Be supportive.
Your role in the life of someone with Myasthenia Gravis is vital in helping them to cope,
stay positive, maintain a healthy perspective and know they’re not enduring their struggles
alone. It is important to provide support that helps them to carry on with life as normally
as possible, rather than pitying them and making them feel incapable. This may play a
significant role in helping them to remain strong and positive.
Be Sensitive.
Be careful not to be dismissive of the symptoms of an unseen illness, or treat those with
the condition as though they are imagining or exaggerating their struggles. If you don’t
understand the condition or how it affects people, ask questions and do research.
Although you can’t always see there is something wrong from the outside, try to remember
that Myasthenia has the potential to be a daily silent struggle. Care for the person by doing
your best to understand what they’re going through.
Remember not to talk down to people with the condition. If you treat them as though they
are sick or incapable, their self-esteem may be affected.
Be understanding.
It’s nice for people with a chronic illness to have visitors and phone calls so they don’t
feel isolated while unwell, so don’t stop providing them with company, but understand
they may tire easily. If you can hear they are struggling, try to keep visits and phone
calls short or be prepared to carry the conversation.
Also be aware they may be embarrassed to speak when the muscles in their mouth aren’t
functioning normally. Pay close attention and try to recognise when your loved one might want to
wait until another time to chat, or find a way to put them at ease so they don’t feel embarrassed.
Often, those with incurable illnesses can feel like they are a burden on friends and family.
Try to reassure them by letting them know they are loved and appreciated, and that you
care for them because you want to, not because you feel obligated to.
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