Monday, August 31, 2020
Wednesday, August 19, 2020
Those of us with Periodic Paralysis are each totally individual and unique!!
Monday, August 17, 2020
Saturday, August 15, 2020
Wednesday, August 12, 2020
For all of the parents who are sending
their children with PP back to school, this may be helpful. It is written for
those in the USA and to help to outline and write either an IEP (Individual
Education Plan) or a 504 Plan (both legal and binding documents in the USA). I
am a retired Special Education Teacher.
(This may or may not be applicable at this time in dealing with Covid-19.)
I wrote this for a parent awhile back...I have meant to post it as a Blog Article, but have never quite finished it before...I hope this can be helpful.
IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis at School
Each plan is individualized to your child's needs, accommodations and restrictions. The biggest difference in them is how it is funded and who will be in charge of the plan.
The best place to start is to have a copy of the information about your child’s form of Periodic Paralysis and how it affects him or her. No one will know what it is or be able to understand it without some background information.
Next, you will need to come up with a list of the needs, accommodations and restrictions, etc that are necessary for your child. You can do this with your doctor or come up with them and then ask the doctor to put them on his/her letterhead for you. The school will have a better time believing and following through this way. This should include the issues related to his heart, breathing, blood pressure, cognitive issues, muscle weakness, and/or paralysis as the potassium shifts.
How to recognize an episode? What to do in an emergency? Teachers and nurse should be trained to recognize signs of an episode and know what to do.
Triggers and how/what to avoid? If any type of exercise causes an episode, then he or she should not have PP, or can he do some simple things like walking, but no running or swimming?
Food restrictions, or does he or she need to eat and or drink something every few hours?
Does he or she need more time to get from class to class? Does he or she need help to get from class to class? Should he or she have a friend with him at all times in case he or she goes into an episode? Elevator rather than walking up and down stairs? Can walk from class to class but not out to the football field?
Due to the time length of episodes or abortive attacks, does he or she require more time to complete assignments? Or does he or she need home schooling/instruction from time to time? Do the district days of absences allowed need to be changed? Days added for him?
Does he or she need adaptations such as using a computer rather than writing with a pencil or pen or doing his or her work orally or verbally?
Can he or she carry his or her books from class to class? Too many books at a time? Can he visit his or her locker more often or leave books and supplies in classroom with the teacher?
Does he or she need a special chair or wheelchair at times in which he or she can recline due to weak trunk muscles?
Does speech/talking in the classroom need to be limited to short periods of time due to weak mouth and throat muscles?
Eyes/eyelids may become too weak to read, etc. Can lectures be recorded or can a friend share notes?
Another important issue to consider is whether the child's symptoms may require him or her to remain at home permanently using home schooling, or attending school remotely or possibly a combination of the two.
**Purchasing a copy of our book, What is Periodic Paralysis? A Disease Like No Other and completing your child’s individual, important information related to Periodic Paralysis at the end of each chapter is an excellent way to share the data and instruction for the teachers, nurses and administers. This is why this book was created, for sharing and teaching others about Periodic Paralysis.
The following are example pages from the book:
What is Periodic Paralysis? May be purchased at Amazon:
Friday, July 31, 2020
Our features and services providing Awareness of Periodic Paralysis include:
The Periodic Paralysis Guide And Workbook:
A Bill Of Rights For Periodic Paralysis Patients
Thursday, May 28, 2020
Wednesday, February 19, 2020
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!
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.
From Psychology Today
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.
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.
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.
What is Self-image and How Do We Improve It?
From Psychology Today
Sunday, February 16, 2020
Finding or Holding Down a Job With Periodic Paralysis??
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 afternoon.
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 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 on-line?
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.
Tuesday, February 11, 2020
Family Dynamics and Periodic Paralysis: An overview
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?
(This was taken directly from my book Living With Periodic Paralysis: The Mystery Unraveled)
Friday, February 7, 2020
Periodic Paralysis Network!
How I got my diagnosis
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.