Cerebellar degeneration - rapid onset of neurological symptoms
This is the story of my mother who suffered from rapid onset of severe symptoms of paraneoplastic cerebellar degeneration related to cervical cancer.
Written by Rick, published over 3 years ago.
I'm always sad to introduce anyone to this group, but I'm grateful that it exists. My mother, Verne, had PCD almost 20 years ago. She was an extremely active woman, an avid swimmer, and an early "power walker", walking briskly for 5 miles every morning at 5am - rain or shine. She was sharp... one of those people who does the New York Times Sunday Crossword in ink... and usually completes it within a day or two. My mother was also the life of the party with a big heart and a love for children.
In 1993 my mother was diagnosed with stage 3B cervical cancer. She was in her late 50s. She was treated over 9 months with 4 rounds of chemotherapy, radium implants, and dozens of treatments with external radiation. She was feeling good and about to return to work.
One day she became very sick and thought it was the flu. She had severe nausea. But within several hours she developed slurred speech and became unable to walk. She rapidly lost all fine motor function and developed severe vertigo along with other symptoms (dystonia, dysphagia, dysarthria... slurred speech...nystagmus... rolling eyes) including severe nausea which we believe was from the vertigo or nystagmus, but it could have been another disruption in her neurological function as well.
She was examined at Memorial Sloan Kettering by Dr. Jerome Posner who diagnosed her with Paraneoplastic Cerebellar Degeneration due to an anti-YO antibody which often results from gynecological cancers. She received several rounds of plasmapheresis, but it was felt that the syndrome had progressed too far and for too long and was therefore not responsive to the pheresis. There was no further treatment plan. She was given a referral for outpatient physical rehabilitation at the Gaylord Rehabilitation Hospital in Connecticut.
She underwent physical, speech, occupational, and aqua therapy. (The aqua therapy was the most enjoyable for her as she was someone who loved to swim). After several months of therapy the doctors determined that she was not making any progress, so the insurance company denied any further treatment. We cared for her at home as a family for about 18 months. Over that period her cancer had grown and was causing renal blockage. She elected to have no further treatment, including dialysis.
She died of cardiac arrest at home about one month later in April 1996. She never saw any of her 3 grandchildren who were all born well after her death. Other than her suffering, this is perhaps the saddest point for me. (The photo linked to this story is of the beautiful grandson she never new... he looks just like his grandmother.) Caring for my mother was the most trying yet the most enriching experience of my life. It has helped bring me very close to my father and a small circle of family members and family friends who helped us throughout this period.
At that time we knew no one else who had been affected by this rare disorder. We were frustrated by lack of information and support. (At the time I had contacted NORD and no one there had heard of it and at that time they would not list it as a rare disorder. I'm not sure why, but times have changed and I'm grateful to NORD for not only giving voice to Paraneoplastic Syndromes today but to supporting this community).
Hospital social workers were very helpful in providing advocacy with insurance companies when we had little time to deal with frequent, erroneous denials of coverage for tests and treatment. In 1996 the internet was just taking off and I found Carolyn in California whose mother was suffering from PCD. We bonded by email and several months later I created the Harvard listserv which has served our community for many years... dare I say over 15 years! We have had approximately 350 members from all over the world over that time.
We are grateful to NORD for offering this very constructive, modern, and interactive forum. I'm very pleased to know that those of you with PCD or caring for someone with PCD now have a centralized forum to share experiences, get recommendations, and simply reduce the isolation that comes with the diagnosis of a rare disorder and the loneliness that can come with caregiving.
I hope that you are all able to find useful information and comfort through this community. You may not know me, but I feel a bond with all of you and I'm sure many others do too. We are here for ideas, support, networking, and many other things that can help you get the best care you need or just make your life a little bit easier. Welcome to all of you and please know that you are not alone.
With every good wish,
Written by Rick, published over 3 years ago.