Sonny's Battle
Sonny was a really great guy. A devoted
father of three, a very loving grandfather of 4 and my caring,
gentle and vital life-partner. To know him was to love him, he
had many very close and dear friends that are as bewildered by
his death as we, his family, are.
On May 15th 1999 my significant other, Sonny complained of
"forgetting" things. He had forgotten the phone number
of the local hospital where his daughter Cindy worked, he had
been calling that number for almost 20 years, and it upset him
terribly that he couldn't remember the number. He even tried to
look it up in the phone book, but was looking in the wrong place
to find that number. That was the first incident that was a bit
upsetting, but we all forget phone numbers, and niether I, nor
Cindy, who is a nurse, got all upset over it.
A couple days later Sonny called me at work to tell me that he
"couldn't think". He was very distraught, so I left
work and came home to see what he was so upset about. When I got
here he was on the phone with the VA hospital trying to tell them
what was wrong. He handed me the phone and I made an appointment
for the next day.
The doctor that saw Sonny that day(May 21, 1999) told me that she
thought there was some memory loss and scheduled a cat scan of
the brain for 2 weeks later ( June 3rd). So we went home and
waited for June 3rd.
On May 30th Sonny was very distressed and told me that I needed
to call his daughters, because he was going to die. He was very
distraught and confused and almost childlike. I called his
daughters and took him to the local Emergency Room. He was
admitted with a diagnosis of stroke treated for 4 days as if he
had had a stroke. All tests came back normal, no stroke. Many
tests were done, all of which come back normal. As Sonny got
progressively worse, and more confused, another test indicated
the possibility of Herpes Encephalitis. 2 weeks later, that
turned out to be a false positive test The spinal fluid is now
sent to Washington DC for the CJD test. By now he is not eating,
more confused, and pulling out IV's. A triple lumen subclavian
catheter is inserted to infuse Hyperal in order to nourish him.
He was restrained in his hospital bed, which he fought
vigorously, exhausting himself in the process. He ended up
ripping out the stitched in triple lumen also. Totally
uncharacteristic of this kind, gentle, loving man. By this time
his daughters, his sister and brother, and I were very concerned
and did not want to believe that Sonny could have this terrible
disease, but what else was there?... How could he have gotten
it?... Why Sonny?..
We got the test results approximately 6 days later. Positive! We
were all devastated, by now Sonny was not able to control his
urine, and not able to recognize people consistently . I think he
knew His daughters and me for a while longer, but not everyone,
like long time friends that would come to visit. The doctors had
put him on Haldol to calm him, as he got very agitated very
quickly and would become combative.
As soon as the positive test result was received, Sonny was
placed in a nursing home facility and 2 days later became
uncontrollable, according to the facility, and was sent back to
the hospital until another place could be found. We found another
place and he was admitted there on Thursday the 1st of July. With
each visit we noticed a significant decline. Sonny passed away on
July 11th. 48 days from first symptom this wonderful man was
taken by this disease that we had never even heard of.
This has been a devastating summer for those of us who loved
Sonny. Our dear, sweet Sonny. He was smart, helpful, loving,
strong and hopeful, just two short months ago. An autopsy was
performed at the IU Medical Center in Indianapolis, IN .. we have
not been notified of results as of today(July 15, 1999.