Charlie
Husband, Father, Grandfather and
Friend
On Feb 28 1999 my husband and I left for a 10 day trip to Florida. We had a wonderful time. The beginning of April my husband started complaining of always being so tired. He kept complaining that something terrible was happening to him inside, but could not explain what. He began to have movemet of his feet and arms (jerky movements) whenever he was sleeping. Toward the middle to end of April he started to forget where his friends lived, where he had been that day, results of his grandchildren's soccer games. This was especially noticable as my husband wouldn't miss a game nor most practices that my grandchildren had. He was kind of the grandfather of their teams. He was called grandpa Charlie by many, or coach Charlie to his own team (assistant).
On May 17, 1999 my husband had his first seizure;
brought by rescue to the hospital he had two more full blown
seizures. He was put in ICU where he never talked until Thurs..
Testing was done (EEG ,MRI, CAT SCAN, SPINAL LUNBARS. ALL
NEGATIVE RESULTS. Only once did we hear CJD but this was merely
mentioned as he had all the symptons but all negative results.
Released on Sat. May 22nd he came home with the same confused
state (never remembering we went to Florida, Mother's Day dinner
out, and again no soccer or baseball scores nor enthusiasm of the
kids games. Admitted again on May 26th for more tests due to
mental state (always crying, low blood pressure, worsening of
movements). My daughters and I were becoming frantic. No one
could give us any answers. More tests, more negative results. On
our own we contacted Mass. General Hospital, grasping at straws
that they perhaps could give us answers.
Thru the month of June, he became more despondent, crying a lot.
He had several more tests at R.I. Hospital. Again. all reports
were negative. His movement when sleeping became worse. Short
term memory became worse. I helped him with all showers as his
balance was very unsteady. He began to speak to each of our
children about his love for them and their families as if he knew
something was wrong. My daughters and I, not being happy with our
present medical team, went for a second opinon at Mass. General
Hospital.
On July 9th we met for 3 hours with the neurologists there. Before any testing was done, but with all our medical records from both R.I, hospitals and the symptons he presented them at that time, balance, short term memory, and lack of co-ordination on some testing, they told us to be prepared for the worse, cjd.
July 12th he had a special MRI at Mass. General with a negative result. Weds. July 21st he was admitted into Mass. General for more tests; Cat Scan, EEG, Spinal Lunbar. The EEG showed some irregularity on the right side of the brain which caused him to be dis-coordinated on his left side.
Thurs. the 22nd he was scheduled for a brain biopsy, the results of which we would not have until Mon. the 26th. Friday after surgery he complained of headaches, which they said he would have for a week due to the size of the incision. He was released by 6.30 in the evening with another appointment scheduled for the following Friday. His doctor seemed optimistic.
Arriving home at 8 pm my husband sat with our children and their families, looking forward to going to both grandson's All-Star baseball games on Saturday if he was up to it. Nine o'clock he was tired and went to bed. Nine forty-five my niece, daughter and grandson went in t o say goodnight. He called my daughter by her sister's name but seemed ok. Ten fifteen when I retired he complained of a headache. eleven forty-five I was awaken by a noise and thought he was having another seizure. He appeared t be hardly be breathing. we called rescue. The paramedics declared him dead and said he had been dead at least one hour. Our shock was ungodly. The medical examiner was called in and we gave him internet write-ups on cjd. He had never heard of it. An hour and ahalf later he was taken out in a bodybag.
The medical examiner refused to unseal the bag until results of his biopsy were available on Monday. Cjd was definitely confirmed. The medical examiner then would not touch the body. No autopsy was to be done. He wanted the body cremated, which we refused. The funeral home was told they were forbidden to embalm the body. They did not want the coffin opened. After much aggravation, they would allow the family to open the coffin with stipulations that the bodybag was never to be opened. Before calling hours they did open the coffin for us. On top of a silk cloth laid my husband's jacket, shirt, tie, etc. as though there was a ghost lying there. Under the silk cloth we were allowed to touch the bodybag they took my husband out in the previous Friday night.
No one, no one should ever have to go through this. The lack of knowledge from the medical examiner's office was disgraceful. The fact that states are not obligated to report this disease is horrible. Any person with this disease is treated so inhumanly and the families too. The world has got to be told that such a disease exists and that funding has got to be made available to find out what causes it and a cure must be found. So little is presently known. You or I could be next. If anybody had told me my family would no longer have our wonderful, husband, father, grandfather. and friend to so many, many people, after 15 weeks of unknown agony. I would never have believed them. October 17th would have been our 40th anniversary. Thanksgiving would have been his 61st birthday.
Oh how much we miss you Charlie.