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In February 2015 local news stations ran a story about a missing person, age 57 at the time and last seen at his Williamsville home the morning before. After a grueling search he was finally located driving down a stretch of Georgia highway after being pulled over by state troopers who suspected tired driving.
Little did we know this was the onset of Creutzfeldt-Jakob disease (CJD) a rare, degenerative and invariably fatal brain disorder. This affects about one person in every one million per year worldwide; in the United States there are only about 300 cases per year.
What triggered Bill Dychowski to leave that cold February morning was a terrible combination of depression and personality change. Upon his return Bill was treated and provided medicine to help assist in any lingering effects and life moved on and all was good.
Fast-forwarding to Thanksgiving 2015, on his way home from work as a table game dealer, Bill called his wife (Pamela Dychowski) and described the difficulty he had dealing his games due to memory loss.
The next several weeks would see a dramatic decline in Bill's cognitive functions. The ability to speak, see and walk became increasingly difficult. Now having visited multiple local hospitals and enduring the pain of every test imaginable, the doctors were still having a difficult time diagnosing Bill's condition. Susac Syndrome, Vasculitis and rare forms of Dementia were all thought to be possibilities but later discounted.
On December 29th Bill was transferred to the world renowned Cleveland Clinic for a second opinion and potential cures. Unfortunately Bill's breathing was so labored upon arrival that the talented staff had to immediately stabilize his breathing. The first of many tough decisions had to be made as it was Bill's request to not be resuscitate in an effort to be the man we all knew, the one who wouldn't want to burden a soul if intended for his purposes. Bill was intubated in order to allow the staff an opportunity to fully evaluate his condition and symptoms, and to research any possibility of future recovery.
After careful assessment from some of the brightest medical minds, the diagnosis began to funnel down to one common acronym…CJD.
With no cure, the focus quickly shifted to Bill’s comfort and accommodating his end of life requests.
On January 1, 2016 at approximately 8:00 am Bill went to be with the Lord.
Bill’s statured was only out done by his personality. The laughter, acts of kindness and memories will live on forever.
This devastating situation is a reminder that most of us are unprepared to deal with a fatal diagnosis and the expenses associated with it.
Any assistance you can provide will be greatly appreciated. Please help us share this story.
10% of all donations will be sent to the CJD Foundation to find a cure and an earlier diagnosis of this fatal disease.
Little did we know this was the onset of Creutzfeldt-Jakob disease (CJD) a rare, degenerative and invariably fatal brain disorder. This affects about one person in every one million per year worldwide; in the United States there are only about 300 cases per year.
What triggered Bill Dychowski to leave that cold February morning was a terrible combination of depression and personality change. Upon his return Bill was treated and provided medicine to help assist in any lingering effects and life moved on and all was good.
Fast-forwarding to Thanksgiving 2015, on his way home from work as a table game dealer, Bill called his wife (Pamela Dychowski) and described the difficulty he had dealing his games due to memory loss.
The next several weeks would see a dramatic decline in Bill's cognitive functions. The ability to speak, see and walk became increasingly difficult. Now having visited multiple local hospitals and enduring the pain of every test imaginable, the doctors were still having a difficult time diagnosing Bill's condition. Susac Syndrome, Vasculitis and rare forms of Dementia were all thought to be possibilities but later discounted.
On December 29th Bill was transferred to the world renowned Cleveland Clinic for a second opinion and potential cures. Unfortunately Bill's breathing was so labored upon arrival that the talented staff had to immediately stabilize his breathing. The first of many tough decisions had to be made as it was Bill's request to not be resuscitate in an effort to be the man we all knew, the one who wouldn't want to burden a soul if intended for his purposes. Bill was intubated in order to allow the staff an opportunity to fully evaluate his condition and symptoms, and to research any possibility of future recovery.
After careful assessment from some of the brightest medical minds, the diagnosis began to funnel down to one common acronym…CJD.
With no cure, the focus quickly shifted to Bill’s comfort and accommodating his end of life requests.
On January 1, 2016 at approximately 8:00 am Bill went to be with the Lord.
Bill’s statured was only out done by his personality. The laughter, acts of kindness and memories will live on forever.
This devastating situation is a reminder that most of us are unprepared to deal with a fatal diagnosis and the expenses associated with it.
Any assistance you can provide will be greatly appreciated. Please help us share this story.
10% of all donations will be sent to the CJD Foundation to find a cure and an earlier diagnosis of this fatal disease.