Myasthenia Gravis

Last night I took Dad to the emergency room said my mom in a matter of fact tone,  she is a "non alarmist" in a family of over reactors.....He has been having trouble swallowing and slurring his words for a couple of days now.  And then the reaction --And you are just telling me this now! Why didn't you call me last night?  This is bullsh*t, don't lie to me.  Hence her need to be a non-alarmist.

My family has been waiting to breathe for the past several weeks and I felt it was time to share what has been going on... I asked my dad to be my "guest blogger", as he is ultimately the one going on this journey.

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From my dad, John Pepe:

 

My daughter, Allison, asked me to discuss my recent diagnosis of Myasthenia Gravis.  I have an autoimmune disease that attacks my muscles, so far only my speech and swallowing.  Yes, I am 66 and yes I ride my bike over 160 miles every week, but I am vulnerable to sickness.  It has been a harrowing month for my family, at first not knowing what was going on, then realizing that I could have something non treatable, to finding out that I have MG, and now how to treat it and what is next in our lives. 

 

I can only talk for a few minutes at a time before my muscles weaken and my words are slurred.   A blessing, I have been told, by my family, my co workers, and my biking buddies.  Do you know how difficult it is for me not to be heard?

 

I have been on medication for a week and I see a big improvement in my swallowing and my speech.  I have a chest CT scan this week.  There is a possibility that surgery may be in my future.  I am not sure if that is a good thing or a bad thing.  Some doctors do not want to perform this surgery on the elderly (over 60).  My neurologist said she will go to bat for me on that.  She said I am not a typical 66 year old. I exercise almost daily.  I take no medicine for anything other than the MG.  I have never considered myself elderly.  I was always Peter Pan, I never was growing up.  Reality sucks. 

 

The future, I am concerned.  My life will be different.  Relieved, I don't have a disease that can not be treated.  Happy, I will be able to watch my grandchildren growing up.  Determined, to get in better shape, to prove that age is not the only determining factor of who a person is.  Thankful, for my family and the love we have, it is what I envisioned the day I met Cathy.  God has been very good to me.

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I've never butt heads more with a person than my dad, but I've never loved anyone like I love him.

Keep him in your thoughts, prayers, meditation sessions, what ever it is that you may do...

For more information on Myasthenia Gravis - read more.      

Photos that made me smile & laugh....