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May 19-25

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I know it has been a long time since I have given an update.  It’s been very emotional for me to come to
terms with the one-year anniversary of me becoming sick. I’ve had to take some time and reconcile that
although I still cannot talk or eat, that I hopefully am still on the road to a full recovery….


Priscilla and I spent much of our summer down at the Mayo clinic getting a second option and a better
understanding of my current symptoms. Although both my neurologists came to the same conclusion,
that I developed GBS and Bickerstaff Encephalitis concurrently, it seems that the damage left by the
Encephalitis left more damage to my brain than previously thought. So, the good news is that I seem to
be getter ‘better’, the bad news is that no one has seen a patient like me and there is no treatment, cure
or magic pill for recovery. My doctors seem optimistic which helps, however, only time will tell…..

A year out from getting sick, I feel fortunate that most of the major muscles are recovering from GBS,
but a lot are still very weak; I can almost keep my toothpaste in my mouth as I brush my teeth. I’ve
been given the go ahead to try to swallow some thickened liquids. I may have taken advantage of my
therapist’s orders and started trying to swallow ice cream. Although my swallow is not perfect, the ice
cream has been a great enjoyment.

I also learned I have Pseudobulbar affect which affects my emotions. Makes some crazy times. Hallmark
movies are a bear since I can’t control my emotions well. As well as some inappropriate responses that
are caused by this. Thank you to my family who deal with it most. I’m sure it is tough when I laugh at
something that is sad or otherwise and I’m just not right with my response. As with other things the
doctors say hopefully my emotions will get better in time.

The biggest progress that has happened it that my ENT, who has been with me since the beginning,
noticed on my last visit he saw some movement in my paralyzed vocal cord. Only a flicker but that is
great news to me. Not that it is what is preventing my speech, but it will help when I get that control
back. And it just feels better to know it is moving and not paralyzed totally.

Although my recovery has been painfully slow, I am blessed with my wonderful, supporting wife that
keeps me upbeat and reminds me of all the small improvements I have made. Thank god for her, she is
an angel. My kiddos that have had to adapt to me not being able to talk or communicate as I would like. They have been amazing and my biggest champions!!!  Still not sure if teaching my daughter how to drive
while being voiceless was a good thing or not, but it was interesting, and she passed her test on the first
try.  So, I guess it worked.

I must thank my coworkers that have helped me come back to work in a limited fashion for their support
and encouragement.  HSEM has been wonderful, and I can’t think of a job that would be there for me like this.  And of course, the Stillwater Fire Department that is patiently waiting for me to come back
with all the optimism and encouragement that I will be back fully.

And my friends and family that keep checking up on me and encouraging me where they can.  I am still
blessed by the love and hope to have better news sometime soon.
 

Till then thank you all!!

 

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