The fog and shades of gray lingered through the day yesterday, as well as breathing issues, fatigue and weakness. I did however, manage to write another blog; translate some conversations in Russian and Spanish; congratulate someone on their genetic diagnosis; work on our survey; pass along information for caregivers; support someone who cannot get a diagnosis; encourage someone, and his caregiver, who is struggling physically while attempting to taper off of harmful medications wrongly prescribed, as he is attempting to get a diagnosis; setting up some technical things for the blog; research more ways to spread the word about Periodic Paralysis; help Calvin make a pot of vegetable soup, from my recliner; researched pure supplements for myself to deal with my exercise intolerance and finally, sent a message to Barrack Obama, the President of the US, during a live phone chat session about the Affordable Care Act, seeking help for those of us with Periodic Paralysis. Wow! It is time for me to take a break. Maybe I will begin to feel better if I rest a little more.
The subject for today’s blog is a continuation of the past two days,
understanding “episodes”. For those who go into full-body paralysis and are
unable to speak, you may find yourself alone when an attack ensues. It is wise
to have information, which can be easily seen for your caregivers or first
responders. One of our members, who lives alone, shared a list of instructions
she has posted on her bedroom door. I used her idea to create one for myself
and my particular needs.
Although, Calvin is usually with me, the day may come when he may not be able to be with me or he may be unable to speak or just in case he needs reminding during the stress of an emergency situation. The following is my “Emergency Instruction Chart”:
My name is Susan. I am 65 years old and I have a very rare disease
called Period Paralysis. The type I have is Andersen-Tawil Syndrome Type 2.
- Dr PCP 541-
- Dr. Neurologist 541-
- Dr. Cardiologist 541-
- Dr. Renal
- Please talk to me and tell me what you are doing to me and for me.
- Please make sure I am comfortable.
- Please make sure I am reclining but not lying flat.
- Please be sure my oxygen is on and working.
- Please cover me with a light sheet or blanket because I get cold.
- Please make sure my head and neck are supported. My head will fall to the side and can hurt a great deal.
- Please do not try to move me when I am paralyzed. Damage can occur to my muscles and joints.
- Please do not put me on an IV. I cannot have saline or glucose…if one must be used, very diluted mannitol may be okay.
- Please do not give me any medications of any kind to include antibiotics.
- Please do not give me any type of anesthesia, to include lidocaine.
- Please do not use a tourniquet if blood is to be taken to check my potassium levels.
- Please do not put any food or liquid in my mouth, I will choke because I cannot swallow.
- Please watch my breathing it may stop or be very shallow.
- Please watch my swallowing. I may choke.
- Please monitor my heart. I have a heart loop monitor in my chest. I have long QT interval beats, arrhythmia, tachycardia, bradycardia and my heart may stop beating. I may go into cardiac arrest.
- Please do not be alarmed if I have myoclonic jerks or fasciculations. It may mean that I am hyperkalemic, and is not a seizure.
- Please have patience. I will come out of it eventually. It may last 15 minutes to several hours or I may go in and out of it.
- Please be ready with a bedpan or be ready to help
me to the bathroom. I will have to urinate urgently after I come out of it
but will still be too weak to walk by myself to the bathroom.
You can use this as an outline for your specific needs.
I have this posted on our refrigerator, one in our car visor clearly labeled with “First Responders”, one in my purse, a few copies in the medical file we take with us wherever we go and one made to wear around my neck as necessary. I fold the paper and place it in a plastic name tag holder on a chain or other type of necklace.