Al’s Story

Site created on May 21, 2020

After 7 months, we finally have a diagnosis for the dementia/epilepsy issues  Al has been experiencing.  We were fortunate  to connect with a brilliant  group of neurologists in Portland who work with guidance from The Mayo Clinic. The diagnosis:   LGI1 encephalitis autoimmune disease.  Antibody’s are attacking his brain!  


It is very rare but thankfully they discovered it.  After much testing, we have a start date for treatment.  Al is headed to St. Mary’s first thing Friday, May 22 for a heavy infusion of steroids designed to combat these little  buggers.  It is an intense 5 day dosage and will then move to a maintenance dosage  for 12 weeks.  We are thankful for your love, support and inquiries.  Hoping by posting here as new information arises, you will be kept updated if needed.

Newest Update

June 07, 2020

Journal entry by Melody Conetto —

Al is doing extremely well!   The steroid treatment has reduced his episodes to just 1-2 small movements per day.   The past two weeks involved testing as we try to discover the root cause. PET scan was negative, so it is NOT the result of cancer.  Very thankful!  At this point, the doctors say it is something that may occur as we age.   

Not only have the movements diminished, but his memory and cognitive issues have improved.  The world’s demise has him fired up again and he is once again crafting a letter to the editor to share his fiery opinions.  He is back!

Thank you for your love, prayers and support.  Am thinking this 8 month experience can finally be something we will leave behind.

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