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.

Cerebellar degeneration - rapid onset of neurological symptoms

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,
Rick H

Written by Rick, published over 3 years ago.

11 comments for «Cerebellar degeneration - rapid onset of neurological symptoms»

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  • cindimann | published over 3 years ago | Originally written in English

    I just read your story of your Mom. So very sorry for your loss.
    I just have a hard time with how fast this disease progresses. Mine started in Feb of 2007. I started falling , couldn't walk without assistance and slurred speech. Also nothing can be done to reverse it either. I had the plasmapherisis, with no change in my condition. I had Lung Cancer but have been in remission since surgery and chemo and radiation.
    I just live from day to day with not not a good quality of life. I have the support of my family which I love dearly, but I hate putting them through so much.
    Take care of your wonderful family.

  • Rick | published over 3 years ago | Originally written in English

    This is the first time I've checked in since my post. I have a good sense of what you're experiencing - at least from the outside. Let me tell you as a care giver that your family is very lucky to have you in every way so don't get down about that. Focus on what you can do each day - however big or small - to bring a bit of joy and comfort to your own life. When you feel joy the others around you will feel it too and it feels so good. My best moments were when my mother was happy and smiling. I also took joy from watching her enjoy a good nap. We did crossword puzzles together - I read the clues, and she gave me answers. The puzzles took us longer to complete but we did them together and it was something we both enjoyed. She was much smarter than I am and she was frighteningly good at crosswords - even with nystagmus. She would close her eyes and picture what the words looked like on paper. Today we have computers and I think we could have done a lot more. I'm glad to see you're on here and applaud you for reaching out and connecting. You are not alone and there are many of us out here to understand. Big hug to you and thank you for writing. :-)

  • cindimann | published over 2 years ago | Originally written in English

    Ty Rick. I try to make my husband laugh but it gets hard sometimes.

  • Debbie8 | published about 1 year ago | Originally written in English

    I don't know if you will ever get this but I lost my mom in 2007 to this horrible disease. My mom did not have cancer. No one could tell us anything. She was fine one day,sick the next,gone in six months. She couldn't talk,see or walk. They said this disease stopped her breathing. Why do people get this? I still do not have a answer. I sure miss her things just are not the same. She should not have died. She was healthy. To all who should see this God bless you and get help from every where. I hope some day soon they have a cure.PEACE!

  • robpleticha | published about 1 year ago | Originally written in English

    Hi Debbie8,

    Rick will get an email notification that your comment was made on his story.

    I'm sorry about your mother and the impact on your family.

    The exact causes of PCD are still not well understood. But doctors think it is an autoimmune reaction to cancer. I understand how frustrating this explanation can be in light of your suffering. Thanks for sharing.

  • thehills | published about 1 year ago | Originally written in English

    i have a sister that became ill after taking a 300 mi bike trip. They first diagnosed her with ALS. After a second opinion that was dismissed and further testing was done. After a rapid decline of her ability to walk and talk, she was finally diagnosed with ovarian cancer and this awful disease. She started having tremors shortly after that. They treated the cancer, successfully but this has overtaken everything. She has become very sick, and is now failing, and the doctors have all said there is nothing more to be done. It is hard to believe how much has changed in 6 months!

  • Debbie8 | published about 1 year ago | Originally written in English

    To the hills may God be with your sister and family. Love her spend a lot of time with her and always look for answers. We have today we are not promised tomorrow. PEACE!

  • tedfaszer | published 2 months ago | Originally written in English

    Rick, would you please tell us more about the Harvard listserv? Is the Harvard listserv still active? Can others join?

    My wife Marietta was diagnosed with PCD, Paraneoplastic Cerebellar Degeneration in 2009. I have been Marietta's 24/7/365 caregiver for the past 6 years. Marietta works hard in therapy to retrain other parts of her brain to compensate for the PCD damage to her cerebellum. We keep looking for new technics, therapies, and treatments which might make life better for both Marietta and me. Any ideas, Rick or others?

  • robpleticha | published 2 months ago | Originally written in English

    Hi Ted,

    The Harvard listserve is no longer active. This might be a good place to look, and more active than the Forum here: https://www.facebook.com/groups/38882118555/

  • fcdelaq | published about 1 month ago | Originally written in English

    Hi Rick, my heart was aching reading your mom's story because it is so similar to my mom's story. I hope you get a chance to read this... My mom is still with us, it has been a little over a year since all her symptoms began and rapidly got worse. She was also a very happy, active, and fun person before this nightmare began... the life of the party!

    One day she started feeling dizzy and nauseous, we thought it might just be vertigo. She stayed in bed for a few days, she couldn't keep any food down, and rapidly started getting worse. She couldn't walk, had no balance, her speech started slurring. It was amazing and terrifying how quick she got worse.

    We took her to the hospital on the 4th day (when she started getting more and more dizzy and nauseous because we figured vertigo couldn't be THAT bad). Well, at the hospital they told her it was vertigo and to go home. Long story short, she was in and out of hospitals for a couple of months, being misdiagnosed over and over again. First it was vertigo, then inflammation in her ear, then a stroke, then it was two strokes! She was sent to a live-in rehabilitation center for a month to do physical therapy and see if she would recover from her "strokes". Finally after a couple of months (in which we took her to see different neurologists) she was referred to an gynecological oncologist... wait, cancer? We didn't understand how cancer could affect someone like this. Turns out she had ovarian cancer accompanied by PCD. I still find it hard to trust any doctor because of how many times she was misdiagnosed, but I guess this explanation made more sense?

    Her CA 125 levels were through the roof, according to those levels she should've been a stage 4 patient, but it hadn't spread supposedly? They never found an actual tumor but decided to do a full hysterectomy on her anyway, she agreed. After hysterectomy and months of chemo she was left weaker, depressed, way too thin.. it was horrible, but hey, at least the chemo was gone. She decided that if the cancer comes back she doesn't want any more chemo, and I don't blame her!

    She is currently cancer free but has been left with all the symptoms from the PCD, it is like a bad bad ataxia. I recently had a baby and decided to save his umbilical cord for her, I want her to try doing stem cell replacement and see if it helps? Any improvement would be a success at this point. It breaks my heart that someone who was once so lively, strong, happy, energetic and INDEPENDENT is now depending 100% on her caregivers. I know she wants to be "normal" again and be able to enjoy her first and only grandson... it breaks my heart.

    I really hope the stem cell replacement helps... if anyone has any advice on other therapies or supplements that might help I would deeply appreciate it. She is currently doing some physical, occupational and speech therapies.

    Lots of love to all of you that are going through a similar situation!

  • tedfaszer | published about 1 month ago | Originally written in English

    Hi Fcdelaq,

    I'm Ted. My wife Marietta was diagnosed with PCD, Paraneoplastic Cerebellar Degeneration in 2009. I have been Marietta's 24/7/365 caregiver for the past 6 years. Marietta works hard with physical, occupational and speech therpists, and in DIY therapy, to retrain other parts of her brain to compensate for the PCD damage to her cerebellum. We keep researching new technics, therapies, and treatments which might make life better for both Marietta and me.

    Marietta's function continues to improve slowly, in tiny increments. Both our oncologist and neurologist are pleased with Marietta's functional improvement.

    You may find more help on the public and private PCD/PNS Facebook pages. You can find the groups by logging on to Facebook and typing "PCD" in the search box.

    Best wishes, Fcdelaq. I hope you will keep in touch.

    Ted Faszer, caregiver for Marietta since 2009.

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