Serene Forest

Tuesday, November 19, 2013

Emergency Instruction Chart

Hello All,
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.

Potassium shifts in my body if I am hypokalemic, hyperkalemic or normokalemic. I become totally paralyzed when the potassium shifts from my organs and goes into my muscles. I am unable to move in any way and am not able to speak or open my eyes. I look like I am asleep, BUT, I can hear everything going on around me. I can hear everything being said.

I may be able to move my index finger on my right hand. If you ask “yes” or “no” questions, I may be able to answer. Up and down is “yes” and sideways is “no”.

My husband, Calvin, knows exactly what to do for me, so listen carefully to what he says and follow his directions. If he is not with me or is unable to speak or help me please follow the outline below:

If I must go to a hospital take me to Valley Medical Center. My doctors are:

  1. Dr          PCP                           541-
  2. Dr.         Neurologist                 541-
  3. Dr.         Cardiologist                541-
  4. Dr.         Renal Specialist         541-
  •  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.

    Thank you!
 Other conditions: Type 2 Diabetes; Fibromyalgia; severe osteoporosis (bone crush of spine); Heart Arrhhythmias: PVC’s, PAC’s PJC’s, Errants, ST Segment Abnormalities, Long QT interval, Non-conducted PAC’s, Abnormal T waves and Angina; Small Vessel Ischemia of the brain; Degenerative Disk Disease; Diverticulitis; Arthritis of the spine; Acid Reflux; Hiatal Hernia; High Cholesterol/Triglycerides; Restless Leg Syndrome; Muscle Myopathy, Exercise Intolerance, TIA.
I have a Medtronic Reveal XT Heart Loop Monitor implanted in my chest…do not give me an MRI

My Medications: Potassium Bicarbonate as needed, Oxygen Therapy 2liters 24/7
Phone number
Emergency Contact 
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.

I hope this has been helpful.

Until later…


  1. I had thought about putting my emergency information on a flash drive with supporting research etc.. but a friend pointed out to me that many medical personnel wont use this form of information as it may contain a virus.. its a shame that some ones computer is more important than an individuals life.. That being said, your solution of having a paper guide in a packet is an excellent one.. if the responder will give it weight and consider it trustworthy... I haven't experienced this scenario yet but realize it could happen at anytime and wholeheartedly agree it is imperative that we provide this information to an emergent care worker..

    1. I should clarify something in my last entry.. Medical personnel often won't use information contained on a flash drive because the flash drive may contain a virus that could possibly damage the hospitals or emergency care workers computer or smart phone .. so they are reluctant to down load this information..

  2. There are many ways to carry or post emergency information and each has their good and bad points. We have found that handing the medical professionals a paper to read, works the best. We have several printed up and hand one to each person we come in contact with. They will usually make more copies to pass around. The name labels may be hooked to a belt. It is also wise to go to your local ER and/or hospital ahead of time and have them copy all of your medical records. They will be in the system when you arrive in an emergency situation. Our hospital is part of a network so all of the hospitals in our area have my records now. Meeting with the head of the ER and the fire chief with your information ahead of time are also good ideas.