Victoria Lauruska

Barbara:

As far as I can tell the beginning symptoms were personality changes.  My sister became more and more easily agitated and less patient with people.  She would make unkind remarks and openly criticize people unnecessarily.  My sister exhibited this behavior from time to time which I and she attributed to PMS but this time it was noticeably different.  She became obnoxious to her closest of friends who loved her but wanted to shun her for fear of her wrath. Afterwards the symptoms were physical as well as social changes.

In January she developed a slight dizziness which she attributed to an infection or as something that would go away.  In February it heightened with an unsteady gait and made us all concerned.  She did go to some doctors who felt it can be treated with Antivert but that didn't work.  By February's end the symptoms were becoming a feeling as she would describe as being "drunk". She hated the feeling since it made her nauseous.  She was then given compazine by the doctors for the nausea but that really didn't help her.

I took her to the 8th Nerve Center in New Jersey to see an ear specialist since she could barely walk without someone holding her to prevent her from falling.  Here she was given a series of tests to the ears.  The results yielded nothing.  I complained or I begged the doctor that she was worsening and needs help.  I could not elicit any from her primary doctor and the emergency room at NYU Medical felt that since her vital signs were good the problem was not life threatening. 

Anyway, the Ear Doctor recommend a neurologist at Valley Hospital in New Jersey.  She was seen by a young surgeon who was genuinely interested and concerned as well as baffled by what she saw.  My sisters eyes would kind of "flicker" up and down sporadically.  The doctor described it as a kind of "short circuit" in the brain.  It was now the beginning of March and my sister was now unable to walk unassisted and unable to read or see clearly.  She could not dial a phone since the keypad of the phone would jitter as she tried to focus.  Her eyes were uncontrollably jitteriness up and down in her head.

She was admitted that night to Valley Hospital where an exhaustive battery of tests including spinal taps; brain scans; brain wave and you name it were performed.  The tests were inconclusive.  The doctors admired my sister since she never complained and cooperated since we both wanted to know what this was all about.  No matter how painful the test my sister was eager to get to the bottom of this.  All that the doctors could see were some minor infarctions (mini-strokes) of the brain but they had happened some time ago.

The only conclusion after three weeks was that she had Ataxia {Olivopondocerebellar Ataxia - O.P.C.A.}.  She was transferred to Kessler Institute for rehabilitation for stroke victims.  There she did well for about a week and was beginning to get her speech back as well as walk.  But suddenly the symptoms "kicked-in" again and she rapidly began her decline which continued until she died.

Nobody could figure out what was going on.  I asked all the doctors and they just said they didn't know what it was but that there was definitely something serious.  I finally went online and searched the Internet for articles on Ataxia.  I came upon the Ataxia Institute in Minnesota and contacted them. They gave me a list of Ataxia specialists.  Approximately six doctors were on that list and one was from Robert Wood Johnson Medical Center in New Brunswick New Jersey.  Since this was the closest doctor to us geographically, I contacted him and described my sisters symptoms and her diagnosis.  He agreed that her rapid decline was not Ataxia and wanted to see her.  We arranged an appointment and had her transferred by ambulance to Robert Wood Johnson Medical.

We met Dr. Johnson who examined my sister as well as asking me questions about her throughout her life and our family history.   My sister had limited speech and mobility at this point (March 10th).  After two hours he concluded that she had Creuztfeldt Jakobs disease.  I looked at him and at first thought, "Oh good, it must be something he know and he can solve medically."  When he told me about the disease; its origins and that there are no known treatments; cures and is always fatal I almost collapsed as I watched these words spill from his lips.  As he sat before me with my sister directly behind him, I knew that she would surely die.

He said he was 90% certain of CJD and asked his colleagues to examine her also. Other neurologists sat with my sister and confirmed his conclusions.  I was horrified.  My sister heard everything said in that room.

The doctor convinced us that a brain biopsy was the only way to confirm this disease and that if we did not do this and my sister did die and it was not CJD then he would be remiss as well as we for not clinically diagnosing this disease.  We agreed and a week later a brain biopsy was performed.  Each day the symptoms progressed by worsening.  Each day I had to train and educated the medical staff since nobody there knew what to do and how to care for her. I taped handwritten signs all over the walls so that anyone entering knew how to care or quickly learn how to care for her.  Sudden movements frightened her and she always had a compelling feeling of falling.  Often they wanted to tie her in her bed and I refused to have that done.  I kept telling her when that symptom would occur strongly that she was in bed and I was there and she would not fall.  Her mind was so strong but still she had to fight the feeling to convince herself.

Also, I would feed her cold food since she perceived any warm food as hot and it would burn her mouth.  Although she could not speak I discovered this symptom as I fed her.  I told all the staff that her food my be room temperature or cool to the touch before she is fed.  Later she lost the ability to drink and could not take fluids but still could eat.

I had her transferred to a hospice since no nursing facility would consider caring for her and the hospital was pressuring me to have her removed.  They weren't sure if she would die soon or months from that point.

After exhaustive searching and phone calls I finally found a good Christian nurse who was extremely helpful and as far as I'm concerned our guardian angel.  My sister was admitted to Jacob Perlow Hospice in New York.  This was closer to my home and I didn't have to drive 65 miles each way to Robert Wood Johnson every day.  Here I could spend more time with her and care for her. 

I would wash and comb her hair; brush her teeth; feed her; massage her legs; wash her down; talk to her; change her bed linens and spend more time with her.  She was there about a week and finally died.  We agreed that no artificial support would be used and that once the IV fluid was disconnected she would dehydrate and her organs would shut down.  There was no longer any point in prolonging the illness and continuing with her suffering.

My sister died 4 days before her 50th birthday which I had planned a big party.  I miss her enormously and my heart will be forever broken.  I can only take each day one at a time and try to go on.  It's still a struggle but I'm told that time will ease the pain and the burden I now bear.  I only hope that the passage of time will provide this relief.

I hope this sums it up somewhat for you to use.  Please use my name my sisters name if you'd like.  I believe it's important to enlighten and educate as many as possible.

There were so many people in the medical profession who could not recognize or identify or understand the care a person with CJD needs.

Your friend,  -- John Lauruska --

New York case:

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