Serene Forest

Sunday, February 16, 2020

Finding or Holding Down a Job With Periodic Paralysis??

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 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 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 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.

Until later…..

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