This blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .
Awareness is a
sense of understanding, knowing, recognition or mindfulness of something. At
this time, among most people in the world, doctors, medical professionals and
government entities, the term Periodic Paralysis has no meaning. It is not
recognized, known about or understood by those in authority who should be aware
of it. This needs to be changed worldwide and we are here to do it.
I had a form of Periodic Paralysis (PP), after over fifty years of searching
for the cause of my unusual, debilitating and progressive symptoms, I knew
there was very little information available about this rare medical condition.
It was obvious that few doctors knew about or understood the condition either.
Through my research, I discovered it takes nearly a decade of graduate school
to become a doctor. During those years of training, unfortunately, Periodic
Paralysis is mentioned in one or two paragraphs and in those paragraphs it is
described as so rare that a doctor will never see a patient with it in his or
her lifetime or years of practice. This is a serious disservice to those of us
who have the condition. As I researched
and learned more, I also discovered most all of the information found on-line
was old, out-dated, misleading or wrong. Sadly, this is the information being used
by many doctors.
individuals are suffering needlessly and even dying due to this misinformation,
under-recognition, under-diagnoses and misdiagnoses. When someone suffering the
effects of the cruel condition of Periodic Paralysis mentions the term
‘Periodic Paralysis’ blank stares, and lack of understanding are the norm,
especially by medical professionals. Very few people on earth have heard of it
or know about it. This has to be corrected.
Paralysis is a serious mineral metabolic disorder, which everyone should be
aware of and understand. However, at this time, among most people in the world,
doctors, medical professionals and government entities, the term Periodic
Paralysis has no meaning. It is not recognized, known about or understood by
those in authority who should be aware of it. Change is necessary worldwide.
When the terms
multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig’s disease), cancer or
leukemia are heard someone automatically visualizes an individual whose health
is compromised, probably in some pain, maybe in a wheelchair and unable to go
about normal daily duties, unaided. The futures of these individuals are
uncertain. Most people are moved to sadness and concern for those individuals.
Family, friends, churches, and even entire neighborhoods and communities
readily offer help and support. This, however, is not the case for people with
the varying forms of PP, however, it should be.
It was our hope
that someday when the words “Periodic Paralysis” are heard everyone would
understand and instantly visualize the seriousness of this condition…an
individual becomes severely weak from muscle weakness or tightness or are
suddenly totally paralyzed, unable to walk or talk and in fear because his or
her heart is racing and beating irregularly, blood pressure is dangerously high
or low, breathing is difficult and may stop, oxygen may be very low, choking
may occur, and he or she may die during the episode from a heart arrhythmia
and/or respiratory or cardiac arrest. He or she may look asleep or unconscious,
they can hear everything going on, but cannot say a word. The individual is
vulnerable and at the mercy of others and ‘totally alone in the dark.’ Over
time, gradual, permanent muscle weakness sets in and the person becomes
disabled. The future of these individuals is as uncertain as in the other
severe medical conditions.
As it turns out,
after nearly a decade of providing, support, education and advocacy for people
with all types of Periodic Paralysis around the world, we know that PP is not
all that “rare,” but rather, as mentioned previously, it is under-recognized,
under-diagnosed and misdiagnosed. It takes an average of twenty years for an
individual to receive a diagnosis. (My own diagnosis took over 50 years!) Many
die before they ever receive a diagnosis or even after due to inappropriate
care. This is unconscionable and unnecessary. This would not be the case if all
medical professionals understood Periodic Paralysis and knew how to recognize
and training is needed for students in medical school and for all other medical
professionals including nurses, EMTs, paramedics, social workers, teachers, lab
technicians and more. Periodic Paralysis needs to be as commonly understood as other
medical conditions such as multiple sclerosis, muscular dystrophy,
fibromyalgia, heart disease, diabetes, and Lou Gehrig’s disease.
We created the Periodic Paralysis Network hoping to
provide the correct and vital information for people with PP, their family
members and caregivers and all medical professionals. We hoped as well to bring
awareness to everyone in the world. We are here and doing this through our
A.S.E.A Program. We are bringing Awareness to everyone in the world through
Support, Education and Advocacy. Our features and services providing Awareness of Periodic
my diagnosis for Andersen-Tawil Syndrome on February 7, 2011, my therapist, Rosie,
who was instrumental in helping me to get diagnosed and supported me through a
few years of uncertainty, hospitalizations and hell, suggested that we write a
book about Periodic Paralysis and all that we experienced before getting the
diagnosis. She thought that the world should know about PP and what we went
through; perhaps we could help others in the same situation. We decided after
much discussion about our education, skills and teaching experience, to create
the Periodic Paralysis Network first to do just that and then later set out to
write our first book. We have now grown into a large forum with many features
and services, each created as the need arose.
Our Periodic Paralysis Network Inc Books
Periodic Paralysis: The Mystery Unraveled
The Periodic Paralysis Guide And Workbook:
Be All You Can Be
A Bill Of Rights For Periodic Paralysis Patients
What is Periodic Paralysis?:
A Disease Like No Other
created and published our books, taking years to research and write, with the
hope that students in medical school, all medical professionals, including
nurses, EMTs, paramedics, social workers, teachers, lab technicians, other PP
organizations, and more would read the information to better understand,
diagnose in a timely manner, and treat patients with all forms of Periodic
Paralysis more appropriately and with compassion.
course the information in the books is mainly for anyone who has this condition
to be able to fully understand everything about Periodic Paralysis from what it
is, to how to get diagnosed, to how to manage the symptoms. Every issue related
to Periodic Paralysis is covered in the books.
of them, What Is Periodic Paralysis?: A Condition Like No Other,
was written especially to bring awareness of the condition to others. It
was designed for those with Periodic Paralysis to be given to doctors,
teachers, neighbors, babysitters, family members and more to inform them about
The sale of our
books (and donations) is how we fund our organization. Every penny from the
purchases goes right into PPNI to cover our fees, licenses and expenses.
In the beginning
the members asked that our Periodic Paralysis Network Support Group be private
due to the medical nature of the issues that would be discussed. They also
asked that no professionals of any type; doctors, nurses, social workers, etc
be admitted to the group as observers. They desired the group to be a ‘safe’
place where they could discuss their feelings, thoughts, ideas and more without
the judgment of professionals. Due to this, we wanted a place where Family
members, friends, doctors, nurses, teachers, and more could go to learn more
about Periodic Paralysis. We created the public ‘Living With Periodic
Paralysis: The Blog’ in order to share our information and discoveries with
everyone around the world. It has a translator so anyone can read the content
Paralysis Network Inc Facebook Page’ was also designed to bring about more
awareness of Periodic Paralysis. Anyone can join. Many articles and posts are
shared about Periodic Paralysis as well as other issues related to it such as
chronic illness, invisible diseases and co-existing conditions. Inspirational
posts are included as well.
ago, one of our members inquired about an Awareness Day for Periodic Paralysis.
One did not exist, so we set out to create one. We decided to use the date of
February 7, the day I finally received my diagnosis after over 50 years. We
created the ‘Periodic Paralysis Awareness Day Page.’ Each year for a
month before that date, we share posts designed to bring awareness of Period
Paralysis on that page. Anyone can join it and the posts are meant for sharing
by our members to bring awareness of it to their family and friends.
Last week I asked the members of our Periodic Paralysis Network Support Group
to name a few ideas that they would like to have me write some new blog
articles about, related to Periodic Paralysis (PP). One member asked me to
write about ‘self-image with undiagnosed illness' and ‘how to rebuild
self-image when one cannot do anything?’ I needed to think about this for a
while, because I myself have struggled with these issues, especially as my own
condition continues to decline. I also continue to struggle, even now, with my
own self-image nearly a decade after receiving my diagnosis for Andersen-Tawil
Syndrome (ATS). The timing on this was more than coincidental, however, because
I just finished reading a book that was given to me as a gift that holds some
answers to these questions and I will discuss it in this article. I have done
some research on this as well and hope the ideas I have come up with may be
helpful to my fellow Periodic Paralysis sufferers and myself.
The Oxford Dictionary describes ‘self-image' as “the
idea one has of one's abilities, appearance, and personality." The example
it uses for how to use the term is: "Sickness is an affront
to one's self-image and dignity."Those words are very true
for anyone who is sick with any illness, medical disease or condition, but they
are especially poignant for those of us with Periodic Paralysis. PP is an
especially cruel and rare mineral metabolic disorder that is difficult to
diagnose and understand and most often mistaken for mental illness (It is the
“all in your head syndrome”). Diagnosing is not straightforward. It can take an
average of 20 years (my own took over 50 years) because diagnosing PP is
exclusionary; which means it is arrived at after all else is ruled out by
testing for other conditions. Testing will always come back negative. If
someone does not know they have PP and doctors do not recognize it, this is
especially difficult to deal with.
PP is not a neurological condition but we are sent to neurologists because the
symptoms look neurological. They give us drugs to treat our symptoms. The
drugs, in turn, cause new or worse symptoms. Then we receive diagnoses for
things we do not have and cycle of 'diagnosing insanity’ continues until they
harm or kill us or we are lucky enough to find a doctor who understands. Many
of us have had to diagnose our self and then set out to get a diagnosis. At
this point we look even more mentally ill to the arrogant doctors who do not
understand or care enough to try to figure it out with and for us.
Through all of this we get sicker, weaker, our muscle weakness progresses, we
develop exercise intolerance and much more...all with no diagnosis. Our family
members do not believe us they think we are faking. (If the doctors do not
believe us why should anyone else?) We lose friends, some of us lose our
marriages, employment or an education becomes more difficult and some of us
must give up our careers…all with no real answers and no diagnoses. Who would
not have a poor self-image of themselves while they are going through decades
of illness, not being believed and tremendous loss???
A large majority of us who then finally do get a diagnosis are classified as to
whether the diagnosis is ‘clinical,' which is based on the symptoms or
‘genetic’ based on DNA testing results. This is a new set of problems that
really takes us even lower. We are discriminated against in the PP community.
Just 9 years ago, I was looked down on for not having a diagnosis and then
actually scoffed at me when I finally got my clinical diagnosis because I had
‘only' a clinical diagnosis for ATS based on my symptoms. Those with genetic
diagnoses and the support group that was available at that time only allowed
those with a diagnosis to join their group, but believe me, they wanted it to
be a genetic diagnosis. I got no help and could get no answers for my serious
questions. (This is why PPN now exists. We are here for everyone and especially
to help with getting diagnoses and helping everyone naturally, not pushing the
drugs, which are harmful to many of us.)
Many, regardless of a diagnosis or not, are still shunned by family members who
do not understand, medical professionals who have never heard of Periodic
Paralysis, co-workers, teachers, friends, neighbors. We are mistreated by
doctors who do not understand and so much more. All that being said, it is not
difficult to understand that those of us with symptoms of Periodic Paralysis
whether diagnosed or not, have issues with our self-image or how we see
ourselves. I am one of those people!
While I was researching this subject I found a really
simple but informative article written in Psychology Today by Katie
Willard Virant MSW, JD, LCSW published on August 10, 2018. It is entitled Self-compassion
in Chronic Illness: A Dose of kindness for improved health. The author
discusses three important components that make up ‘self-compassion,' which can
be used to help us rebuild a positive self-view of ourselves.
They are: self-kindness, common humanity and
The three components of self-compassion:
When we are chronically ill, we tend to be
negative and use self-blame and self-criticism often. We did not make ourselves
sick nor is it our fault that we cannot do things that others can or that
others think we should be able to do. We may even think of ourselves as
‘stupid’ or lazy at times. Instead we need to change the self-dialog and treat
ourselves with acceptance and understanding. It will not come easily, but with
practice we can begin to feel better about ourselves.
We need to remember that
we are not alone in our suffering. Others are going through the same things we
are experiencing. Others also have Periodic Paralysis. Our journeys are much
the same. Painful experiences are a part of everyone’s lives.
Mindfulness We need to take a balanced look at
our emotional negative states, rather than becoming caught up in them. However,
we should not ignore or deny the feelings, instead we need to notice and look
at them, but not get immersed in them. For instance if we feel sad or angry, we
can feel it and recognize it and then let it go.We should not feel
guilty for having the feelings.
Seeking advice on this subject from
my daughter who is a therapist, she suggested a self-help workbook that may be
helpful. It is titled, Get Out of Your Mind & Into Your Life by
Steven C Hayes, PHD. The cover explains “You can learn step-by-step how
mindfulness and acceptance can help you: overcome depression, transform
emotional pain, free yourself from negative thinking and self-judgment, commit
to what you care about and live a life you value.” It teaches how to use the
new Acceptance and Commitment Therapy; how to repair our mind after it has
turned on us.
As I mentioned in the opening paragraph I received a
truly remarkable book for Christmas and just finished reading it last night as
I was contemplating writing this article. I want to mention it here because I
think it may be helpful in rebuilding ones self-image. It is Man’s Search
For Meaning written by Viktor E, Frankl, a Holocaust survivor and the
creator of Lgotherapy.It has helped me
tremendously in how I look at my life with chronic illness, which has caused me
great loss. It is one man’s story about how he found meaning in every moment of
his life despite losing everything including every member of his family and
suffering in unimaginable and heartbreaking ways. It was inspiring and filled
with ideas of how to change our way of thinking about, and looking at, our
life. One of his important quotes in the book is “suffering is not necessary to
find meaning, only that meaning is possible in spite of suffering.”
Another thing we must have in order to re-build and
maintain our own self-image is to awaken each day with HOPE. That can be
very understandably difficult for us.
What is hope?
According to Longman Dictionary of Contemporary English 1 hope is
“a feeling of wanting something to happen or be true and believing that it is
possible or likely.” Another dictionary states hope is a
"feel[ing] that something desired may happen". Hope is
a sense or desire that things will turn out for the best. The word hope may
be used as a noun or a verb. 2
In terms of my
life with Periodic Paralysis, many doctors, including the specialists, have
told me that there is nothing they can do for me. I can take no medications,
have no surgeries and I am in a gradually declining physical state. I would be
dead now if it were not for my husband, Calvin’s research and fight for the
things that now keep me alive and were giving me a better quality of life. He
found that preparing and feeding me a pH balanced diet with needed supplements,
providing me with oxygen therapy, helping me to discover and avoid my triggers,
sheltering me from stress, keeping me hydrated, monitoring my vitals and
remaining optimistic brought me back from the brink of death and reduced my
paralytic episodes from four or five full body attacks a day lasting several hours at
a time to one or two less severe episodes a year!
He had hope.
He had a desire that things would turn out for the best. He was correct in what
he did and how he did it and was optimistic that I would get better. He
maintained hope that I would improve in all ways and the truth
is that I did. Since that time, because of his hope and
optimism, which I now share, we wrote and published, four books about Periodic
Paralysis and maintain our PPNI Forum and our Blog. We share all that we have
learned to help others with PP.
something about HOPE each day in the Support Group as a reminder to each
of us. Please do not give up HOPE.
The final ingredient I have chosen to
discuss, which I believe can help us to rebuild and maintain our self-image is
about having something to look forward to. No matter how large or small it may
be, we must look to the future. I have little to look forward to each day as I
sit in my recliner, but I find little things. For instance right now, as I look
out my windows I see our beautiful but bare forest. Although it is slightly
above freezing, the sun is shining. I am hopeful that spring will soon be here
with warmer temperatures and blossoms and leaves on the trees and bushes. It
will be warmer and I am looking forward to getting in my power wheelchair and
going for a “walk“ down our road. We have no family that lives near us so I am
also looking forward to some of my family members possibly visiting later this year.
I hope I have presented some ideas that may be helpful for each of us to
rebuild or repair our self-image and enjoy each day.
the idea one has of one's abilities,
appearance, and personality.
is an affront to one's self-image and dignity"
Wikipedia Self-image is
the mental picture, generally of a kind that is quite resistant to change, that
depicts not only details that are potentially available to objective
investigation by others (height, weight, hair color, etc.), but also items that
have been learned by persons about themselves, either from personal experiences
or by internalizing the judgments of others.
Self-image may consist of four types:
1.Self-image resulting from how an individual sees oneself.
2.Self-image resulting from how others see the individual.
3.Self-image resulting from how the individual perceives
others see them.
4.Self-image resulting from how the individual perceives the
individual sees oneself.
These four types may or may not be an accurate representation of
the person. All, some, or none of them may be true.
Finding or Holding Down a Job With Periodic Paralysis??
I was asked to write a blog article about jobs suitable for those
of us with Periodic Paralysis (PP). As I contemplate this issue, I know that
there is more than one answer and many things to consider.
Periodic Paralysis is a mineral metabolic disorder with varying degrees of
symptoms depending upon the form of PP that one has and the stage of PP that
one is in at any given time and any other medical conditions that may be
coexisting with PP. Important to also consider is the degree with which one’s
symptoms are being controlled.Periodic
Paralysis is a progressive disease, so most people will get worse or at least
weaker over time and this must be factored in as well.
The symptoms of PP are not stable; they change over time depending on the
trigger or triggers we may be exposed to in any situation. The triggers can and
do change. For instance, sometimes a food we eat may send us into full-body
paralysis, but at other times it may not. There can be a delayed reaction to a
trigger, so we may be fine today after exercising, but when we wake up the
following morning we may not be able to move. We may have eaten a high
carbohydrate dinner the night before and it may cause symptoms the next
Periodic Paralysis is unpredictable and must be factored into any type of job
or career we may be planning on seeking or studying for in the future.
Our age must be considered as well. Some of us do not develop severe symptoms
until we are older, but some of us have symptoms beginning as children. This
being said, are we able to attend college or a trade school? Maybe we can do
that now, as any other normal people can, but will we be able to hold down a
job or a career that we are seeking when we finally compete our studies? Will a
trade we want to learn, like mechanics, be something we can do in five years?
Will you be able to find a company with management that will be able to work
with you to accommodate your needs such as, coming in to work late some days or
the need to leave early, or maybe resting in the middle of the day? Missing
several days in a row? Will they allow you to work from home?
There is so much to consider.
In my case, I had symptoms very early in life, but did not know I had Periodic
Paralysis until I was 60, much later in life, but I was deemed totally disabled
at the age of 50 for other reasons which we now know were the PP. I had four
children and raised them without much difficulty, though there was always a
medical issue or problem with keeping up, etc. My symptoms got worse with each
passing year. However, I did push my way through college (started at 34) and
working and raising my family until I graduated with two degrees, Special
Education and Psychology, a month after turning 40!
I was able to teach for nearly 10
years, but each year got harder and more difficult. I got weaker and more and
more symptoms developed. I was given drugs for the symptoms, which made me
worse. I finally had to retire half way through my 9th year of
teaching. I had to fight for disability, which I did not get for three more
years. They finally approved my date of disability as the last day I was able
to teach, three years earlier.
I continued to go downhill in all ways… I first needed a cane, then a
self-propelling wheelchair and then finally a power wheelchair. I was put on
oxygen and spent, and still spend, most all of my time in a recliner due to
permanent muscle weakness (PMW) and exercise intolerance.
However, all of that being said, I have been able to do many things right from
my recliner. I have the world at my fingertips. I created the Periodic
Paralysis Network Forum. I have written and published six books. In the early
years of PPN, I was spending most of my waking hours on-line in real time
working on the support group and writing.
Another story I can tell you is about one of my daughters. She started college
late like I did and has been sick like I was as she worked full time and went
to school. It took her 16 years. Some of her work was done on the computer from
home. By the time she finally graduated with two Masters Degrees (Psychology)
and a Bachelors Degree, she has become even more ill. She tried working
full-time jobs as a therapist for a few companies but had a great deal of
difficulty keeping up. She missed many days and finally gave up. She has,
however, found that she can work from home, as a therapist for a company that
does all of their therapy on-line. She can make her own hours; rest as much as
she needs, eat better, does not have to drive anywhere and much more. She is
thriving now and making nearly the same as her salaried jobs.
Why did I tell you these stories? I wanted to let you know that there are
things you can do for employment, despite having Periodic Paralysis. However,
there are many things to consider before you move ahead with your plans,
because there are many things you may not be able to do, at least in the way
others do or what you may want to do.
I wanted to be a teacher working with special needs children. I was able to do
it but for only a few years. As disappointing as that was for me I realize that
I am still a teacher and still working with individuals with special needs. I
am still able to use my psychology and writing skills. As small as the impact
may be, I am making a difference in other people’s lives and I feel
satisfaction in that.
So, considering all of the things discussed above; what do you want to do? What
are you good at? What special skills do you have? What are your limitations or
what might they be in the future? Will you need to go to college, trade school
or obtain special training? Will you be able to manage the training? Can you
create a plan to look for the job you think you can do or find the training you
need to do it? Is there help available? Can you do the college work or training
More and more jobs are being done at home. My son-in-law works from home
everyday in IT. He must stay home to help my other daughter who has severe
medical issues from PP. My son works some days at the office and some days at
home in communications.
All is not lost when it comes to employment and working if we have Periodic
Paralysis. We must think outside of the box, however. Our desire and new
technology in today’s world are making it easier to make a living from home,
where we can arrange our own hours. Colleges offer degrees that can be earned
from home as well. Laws are also in place to assure accommodations for
individuals with disabilities.
You must decide what will work for you based on what you want to do and with
the understanding of your limitations and possible limitations in the future.
Family Dynamics and Periodic Paralysis: An overview
I have a family with many members who do not believe that I have a rare, hereditary, mineral metabolic disorder called Periodic Paralysis. They believe I am faking and making it up. I am severely affected by the disease and it has reduced the quality of my life, however I am more affected by having doubting family members who should be there to provide help and support to and for me. There is a huge division in my family, between the believers and the nonbelievers. I am in contact with many people who also have Periodic Paralysis whose family is much like mine.
Periodic Paralysis is a cruel disease. It is one that is difficult to diagnose, though it does not need to be. Doctors, for the most part, who do not understand it, look at patients with it as hypochondriacs, malingerers or faking it. If the doctors treat us that way, is it any wonder our families may feel the same?
Some family members stay away or are very limited in their interaction with you, because they cannot face watching your decline. They may feel helpless. Some just do not know what to do or say. Some do not care or are in denial.
Others may not understand, for whatever reason. They may not have read about it. They may misunderstand. They may be stubborn about issues such as hereditary. They may not want to know. They may not care.
Many family members are living in fear that it may begin to manifest in themselves or their children. Others actually have the symptoms but are afraid to face them. They will have to sooner or later. I will be there for them or my website with all the information they may need.
I thought perhaps when I finally got my diagnosis that I had become vindicated and validated to my family. I thought they would believe me and thank me. Except for a few members who already believed me and supported me, I was wrong. The silence remains disheartening and deafening.
The way I handle it is to provide as much information as I can to them. I have the papers with my diagnosis and am happy to share them with those that are trying to get diagnosed. I have developed a website for them and others to refer to as they have questions. I have also written four books about it mainly for them. I try to maintain communication with them, however strained it may be. I am here for them and let them know. Beyond that, I can do no more.
The loss of our families seems to be another cruel reality of Periodic Paralysis, and as one of my brothers says, “It’s just that simple!!”
(This was taken directly from my book Living With Periodic Paralysis: The Mystery Unraveled)
I am 71 years old and was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis on February 7, 2011 at the age of 62. The form I have is a variant of Andersen-Tawil Syndrome (ATS). I was misdiagnosed for over 50 years. How could such a thing happen in today’s world with all of the modern medicine and technology? The following is my story, information about this cruel disease and how and why I control the symptoms.
I have had episodes of partial and total full-body paralysis for much of my life. Due to a series of misdiagnoses and mistreatment with improper and inappropriate medications and treatments, I have become totally and permanently disabled with weak muscles throughout my body including those involved with my vision, digestion, breathing and my heart. I must be on oxygen constantly and cannot exert myself in any way. I have had a heart loop monitor inserted in my chest to monitor the tachycardia and arrhythmia, which include life-threatening long QT interval heartbeats. I sit in a recliner for most of my day and can walk (with a walker) only from one room to another or stay on my feet only short periods of time to do simple tasks like brushing my teeth. I must use a motorized wheelchair if I leave home or need to go any distance. If I did not have the help of my husband, I would have to live in an assisted living program.
Through the past years of my physical decline, I have had to give up my career as a special education teacher, my hobbies to include hiking, walking, swimming, exercising, fishing, camping, traveling, shopping, cooking and baking. I had to sell, and move away from, a beautiful home in the mountains of Utah. I can no longer drive. I have lost many friends, because I could not keep up with them or entertain any longer. I have lost contact with family members who did not understand or did not want to watch my decline or who thought I was a hypochondriac. I have lost the connection I once had with my grandchildren because I can no longer keep up with them or continue a meaningful relationship with them. The relationship with my husband has changed from husband and wife to caregiver and patient. Most of the over 30 doctors I had seen in those 6 years have treated me poorly and as if I were mentally ill.
I have spent several years working diligently to get a diagnosis and treatment for the ailment that cruelly stole the quality of my life. The most difficult part of this, for me, is knowing that I may not have became this seriously ill if just one of the over 30 doctors I have seen in the last 6 years in Oregon and the many years before, would have taken me seriously.
One Sunday morning after recovering from yet another full body paralytic episode, I searched once again on my computer for “periods of paralysis”. I was shocked and dismayed to read about a disease, which actually had all of the components many of my family members and I had been experiencing for so many years. Once I realized what I actually had, the struggle became even more difficult trying to convince my doctors. By this point, everything else had been ruled out, but no one wanted to diagnose me. I heard I was “too old” to have it. I was ignored. I was dismissed and told to go have a “good time” as long as I was in Portland, after driving 250 miles for the results of a muscle biopsy (The test did show myopathy (muscle disease), change in shape and size of muscle fiber but I was told it was normal). I was given lidocaine after telling my primary care physician (PCP) I could not have it during a mole biopsy. It caused an episode of paralysis but I was treated as if I were a naughty child behaving badly. I was left alone in the room in paralysis. I was in metabolic acidosis, twice in front of my PCP and sent home rather than to the hospital. My heart was in tachycardia and I could not breathe. After discovering that I was having long QT interval heartbeats on a Holter monitor (a marker for ATS), this was dismissed by my PCP, even after being told it meant I could go into cardiac arrest at any given moment. After two months, I had to request a referral to an electrocardiologist. The referral took two more weeks to get from my PCP and the insurance company.
During this time, I continued to decline as I had more and more severe total paralytic episodes. I had tachycardia and palpitations of my heart and I was having difficulty breathing. Sometimes my breathing would actually stop for a few seconds at a time. It felt like an elephant sitting on my chest. It was very frightening. Soon the difficulty of taking breaths in and out began to happen when I was not in paralysis. I found it more and more difficult to breathe. Every time I stood up, ate a meal or exerted myself in anyway, the breathing got worse and my heart would speed up until it was beating 130 to 140 beats per minute, even while I was eating.
My husband became so concerned with the lack of caring being displayed by my PCP and our insurance company, that he walked into a medical supply company and told them what was happening and asked if they could help me to get oxygen because I could not breath. After speaking with him for a few minutes, the manager told my husband that she would give all of the information he had carried in with him, to one of the technicians and that they would see what they could do for us. She told my husband that they find it is best to get all the information together and then, “Hit them (doctors) between the eyes with the facts”.
They hooked me up with a recording oximeter. It was discovered that my oxygen saturation levels were dropping dangerously low during my episodes of paralysis and it was apparent that they were low every time I exerted myself in any way. The technician took the information to my PCP and she had no choice but to sign a referral for me to get oxygen. At that point, we began to look for another PCP and decided to change insurance companies to avoid the need for referrals.
A month or two before this point, I was in despair over trying to find a doctor who knew about Periodic Paralysis. Then on the evening news, I saw their weekly feature of offering direct calls to doctors with any medical question. I quickly picked up the phone. After a wait of only a few minutes, I was speaking with one of the physicians. I asked her if she had heard of PP or knew of any doctors who might know about it. As luck would have it, she herself had a patient with it. She gave me the name of the neurologist the patient sees.
I went to my PCP with this information and talked her into giving me yet another referral. The neurologist eventually diagnosed me with “probable” Periodic Paralysis. He wrote a letter telling my PCP that I needed to see an electrocardiologist right away. It was several months before I got the referral. He described my heart condition, by that point, as serious with no treatment, but insisted I needed to have a heart monitor implanted. He also set up a renal specialist to help diagnose what he believed was Andersen-Tawil Syndrome based on all the information being presented to him by my PCP, the neurologist and me. I did get the diagnosis while in the hospital for the implant after going into paralysis and being observed by the doctors. The paralytic episode was caused by a mistake. They gave me a saline drip and lidocaine during the procedure. My diagnosis was actually based on an accident.
Since my diagnosis nine years ago, my husband and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of nearly 1,000 people who are affected by Periodic Paralysis. The Periodic Paralysis Network provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through all natural methods. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will receive encouragement, support, sympathy, empathy and validation. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas. We are usually on in real time, answering questions and providing support as needed for our members.
We have also written and published the books,Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide and Workbook: Be All You Can Be Naturally, A Bill Of Rights For Periodic Paralysis Patients and What Is Periodic Paralysis?: A Disease Like No Other. If you wish to know more about Periodic Paralysis, you may visit thePeriodic Paralysis Network. ( periodicparalysisnetwork.com )
***** I have now been diagnosed genetically with Andersen-Tawil Syndrome (ATS) KCNJ5 and Hyperkalemic Periodic Paralysis (HyperKPP)/Paramyotonia Congenita (PMC) SCN4A *********
PPN Blog: We have over 160 blog articles written about all aspects of Periodic Paralysis. The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis.
Periodic Paralysis World Awareness Day Page: This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year!
Happy 6th Anniversary to our PPN Blog!! Six years ago today we created our PPN blog called 'Living with Periodic Paralysis: The Blog' and posted our first Blog Article. We now have posted over 160 Blog Articles related to Periodic Paralysis! Below is a list of the articles and their links.
List and Links of PPN Blog Articles
(This begins with the most recent articles and scrolls down to older articles)
An Overview Of Fighting For And Receiving A Diagnosis For Periodic Paralysis