Below are comments from patients with Periodic Paralysis.
Before you read the comments below and at the end of this paragraph I want you to close your eyes and imagine you are in bed at night getting ready to sleep. You had a great day full of fun and activities. You’re ex
hausted, you need to sleep and get rested for tomorrow’s activities. But if you suffer from Periodic Paralysis the only thing on your mind will be “when I wake up, will I be able to move”. Now close your eyes and imagine you have woken up paralyzed. It’s not difficult to do because you cannot move. What’s worse is that you may have had this condition for years before getting a firm diagnosis. You may have spent years being called a “malingerer”, accused of faking symptoms or just plain neurotic.
Here’s the link to her blog where you can read more information.
https://livingwithperiodicparalysis.blogspot.com/
They tell us it can’t be real.
I started college in August and it has been rough to say the least. Everything was going great until around late October/November when it started getting cold. I began to sleep longer and harder, and having abortive attacks/episodes every day. It got the point where I was unable to make to any of my classes or get out of my dorm. For about 3 weeks I was trapped in my stuffy, cramped, dorm. Thankfully, my profs were more than willing to work with me and help me catch up on all of my work. It took some time, but I was able to get back to class just in time for finals. I passed all of my classes with a C being my lowest grade. Not sure how I did it but I did. I used Winter Break as a time to recover and spend time with the family. Now the new semester is about to begin and I have a feeling it will be WAY better than last semester. Wish me luck!
– Morgan
Patient
I just came across your company’s information on the Periodic Paralysis Association’s website. All I can say is, people with difficult to manage health conditions, like us, have been waiting for a company like yours to create a device for at-home blood testing with immediate results! Your technology sounds phenomenal. Personally, I would LOVE to have a meter to test levels of potassium, magnesium, calcium, and/or all the electrolytes. Nearly ALL my emergency room and doctor’s office visits are to have blood tests to find out if I’m properly managing my condition. Could you please tell me when your testing devices might actually be made available for purchase? And, in what country is your company located (I don’t care if it’s the US, I’m just curious)?
Patient
I am new to the forum. Have suffered from KPP since I was 13. Now 40. Always felt like an alien because I’ve never met anyone else who suffered. Looking to learn how others of us manage the disease! So excited to learn and contribute! Also, looking to get suggestions on the best dietary foods to eat that can help replace and sustain blood potassium.
Patient
I have a couple of questions for you: Will this device be small and portable? Will supplies need to be carried with it? Will it be expensive to purchase and will it be expensive to maintain? This is on my mind because I had an episode in public last night. I was out for dinner and symphony with friends. An ambulance had to be called. It was rather mortifiying. If this meter is small and could be slipped in my purse, I could have discretely started measuring my K earlier in the night and perhaps have taken enough medicine to avoid an episode, or at least one requiring an ambulance. If these meters are functional enough, not only would we be using them on a regular basis, we would also be using them in an emergent situation either to ward off an episode or to have accurate data to give the doctor when we arrive at the hospital. (Because we will be taking K before we arrive at the hospital and our blood values might look “normal” by the time they are able to draw blood samples.) Thank you.
Patient
Can’t speak!
When I have full body paralysis I cannot speak. This is due to having breathing difficulties. Can’t speak because I have very shallow breathing.
I have suffered full body paralysis for over 20 years now and although my whole body is unable to move at all I do have movement in my neck and my head so at least I can communicate by nodding up and down and sideways .So as long as the correct questions are asked. Like are you OK? Is the quilt convertible ? etc I can communicate .
They last in the region of 2 hours or so , some longer some shorter.
It was interesting that some of you say your tongue swells or goes numb . Mine does too and I cannot swallow anything once the full paralysis starts.
The tongue swelling or numbness and swallowing stopping along with having to take my wedding ring and watch off as my wrists and fingers swell are my first indications that the bigger full paralysis is on its way.
It is these early indicators ( about 5 min )that ensure I can lie down as comfortably as possible before the full body paralysis starts. At least it gives me time to empty my bladder and clean and rinse my mouth and try and position myself in bed.
Propping up my head with pillows helps a little with the breathing but its at the expense of increased back and neck pain.