Little Q & A session

We thought it would be good to include blogs that allow me to answer questions people might have regarding my stroke and locked-in syndrome. If you have questions you would like me to answer, you can post them on my blog and Celia will shoot them over to me!

1.) What is some advice you would give medical staff when working with a patient who can't communicate? 

My first bit of advice to medical staff would be to get a hold of Celia. As a patient who was at the mercy of everyone asking questions only require a yes or no answer. I must say that I would often get too part and open-ended questions, which only left me wondering how to answer. 

My getting this device changed my life forever. I have actually developed anxiety over a couple of times I have had to be without this device for one reason or the other. 

There are actually three different classifications to my locked-in syndrome, while mine has never been disclosed to me. I think by what I've read, mine is the type that has some additional movement in my fingers, toes, and head. It would be best to use any movements to develop a language that although it may be unique to that patient, certain movements indicate specific responses and would help make communication easier. 

It should be posted in a spot where all medical staff, as well as the patient and any visitors, can see it. It would also be helpful to be consistent in scheduling the same medical staff in the care of the patient in the interest of quality care. 

I had the luxury of having the same two or three people take care of me which gave me peace of mind. One person that comes to mind was Connor. He not only was someone who I looked forward to being there. He learned my machine almost as well as me and put his phone number up on a whiteboard in my room so that any medical staff having issues with my machine could call him for help. That's why I say it's helpful to have the same person assigned to the patient. They learn through repetition how to communicate.

Q:  Have any of your senses increased since your stroke? 

A:  While many would say that I don't have any senses, they would be wrong when it comes to speaking about my stroke. As far as when talking in general, the jury is still out! I'll leave that to you to decide if you should ever meet me. 

I can say that my senses have never left that I've ever noticed. People will often touch my feet or forearms and ask me if I feel it, or if they feel the same. But I always do feel it and they always feel the same. My vision is still as bad as it always was, no improvement there. 

The one thing that has gotten better is my sense of smell. I lost it some 30 years ago but lately, I have been able to detect some odors. That could be due to my having gone on a Vegan diet. As long as I am on tube feeding, I may as well do what is probably the most healthy for me. I doubt I will be able to remain a Vegan, should I ever return to regular eating. Vegetarian maybe, but Vegan is highly unlikely! 

As far as my hearing goes, like most males, I still maintain what my wife has always called selective hearing. Basically, that's where I can hear one of my drill bits hit the floor and the direction it rolls in. But I can't listen to her ask that I clean out the shed twelve times. But to be honest, that could be a factor in my failing memory. My 30-year failing memory! 

And as far as my sense of taste goes, as I said, I eat from a feeding tube. So no real food passes my lips. As most taste comes from your sense of smell. Mine was what I would call diminished, prior to my stroke, I would expect it is improving, along with my sense of smell. 

I have been allowing myself to sneak tastes of my wife's Mashed potatoes or my daughter's 13th birthday cake and a little ice cream. Although I'm told there is a risk of aspiration pneumonia, I have decided to live my life. Not continue to try not to die! 

By the way, when it comes to the sixth sense, let me say that we'll have to wait and see. People will often say that they develop this sixth sense after a traumatic event, but I haven't noticed any strange powers since my stroke. Let me tell you though that I will let you know if I suddenly am able to read minds or see-through walls.

3.) Have your emotions changed since your stroke?

Since my stroke, I have had increased anxiety. I struggle with it all the time. Most of it was developed while I was in the hospital. I try to deal with it using inner dialogue to tell myself it's unreasonable to think that way. I also try to focus on something else to divert my attention. The second way works best for me. I believe I am more understanding and patient. I mean what else can this bedhead be but patient?