We have members from all over the United States and in several other countries. Biographical information on them will be posted as it becomes available.
Martin R. Burke (Marty) and Diana Gallagher Burke (note: no hyphen!). We live in Minnesota, and moved here from Kansas. Pictures are on The Links page. Here are brief descriptions.I am a writer, an astrologer, a Catholic Christian a mystic, and an Ataxic--which is to say, I have Cerebellar damage--of the Paraneoplastic variety! You can write to me in French and German, as well as English, and I will understand you. Diana (the Famous One) is the author of some 29 books, and has won a HUGO for her art. Find out more about the Burke's at: http://www.netcom.com/~mrburke/
Linda Doyle has been hospitalized for two years now as a result of Paraneoplastic disorders resulting from breast cancer. Until several weeks before the onset of the illness she worked in an Ottawa law firm. She is a graduate of the Universite de Montreal in law and has an interest in theatre and literature. Her husband Patrick is a writer and television producer. Both Linda and Patrick are fluently bilingual in English and French. They have one son, Liam, aged 14. Originally from Montreal, the family now lives on a farm some 65 km west of Ottawa. Find out more about the Doyle's at: http://www3.sympatico.ca/patrick.doyle/
Carolyn Lawrence (CZLAW@aol.com)
is one of the founding members of the International Paraneoplastic Association and
paraneoplastic support email list. She is a magazine writer living in Southern California.
Two years ago, her mother, Ellen Ziek, was diagnosed with paraneoplastic
cerebrellar degeneration related to cancer of undiagnosed origin. Ellen now also lives in
Southern California and is putting up a tough fight against pcd and the cancer. Carolyn is
always willing to share information and support with other pcd caregivers and sufferers.
Lisa Korenko's 3 year old daughter, Justina,
suffers from OMS with neuroblastoma. She first became sick in November of 1996 and was not
properly diagnosed till March of 1997 at Childrens Hospital Los Angeles. She has been
treated with ACTH, prednisone, IVIG and has just completed a course of Cytoxan and
plasmapheresis. All treatment except for prednisone has been stopped in December 1998. We
are hoping that her immune system has been altered to not have the symptons return.
Currently, her only defecit is tremors with fine motor skills and is severly speech
delayed. Her gross motor has returned without any noticable ataxia. We live on the Central
Coast of California and currently being treated at Santa Barbara Cottage Hospital.Our
page: http://hometown.aol.com/LJKorenko/index.html
My name is Norm Tooley. (ntooley@benzie.com) After being ill for several monthes,having almost every medical test known to man,losing over 40 pounds with still no diagnosis, I was referred to Mayo Clinic.The average stay at is three days;I was there twenty days.I had no feeling{other than some tingling} from the rib cage down, almost continual hiccups,and very little sense of balance.The first week at Mayo I was diagnosed with small cell lung cancer and told the tumor would fit on the head of a pin.That is why no-one else had found it. I was also told an MRI had shown a swelling at the back of the brain which was another possible tumor and this was very serious,but they wanted to run more tests. I finally was told that all the neurologists meet early every saturday morning to discuss a case that can not be diagnosed, put all the records on a table,have a group discussion,and come up with a diagnosis;and this saturday I was the selected case. The neurologist called to tell me I had probable paraneoplastic syndrome and a test on monday would probably confirm it (which it did). I was told as the tumor was cured through chemo and radiation, the pps would hopefully be transient and dissappear.At this point I went back home to Michigan for treatment.The tumor was cured,I got the feeling back in my legs,and everything was returning to normal.At this point I was told I should have radiation to the brain as small cell cancer travels in the bloodstream and there was a chance of a tumor in the future.Upon starting the radiation the pps came back and has only slightly abated.I am able to work every day but my sense of balance is not what it once was, and the tingling in my lower body is an annoyance.I consider this only an annoyance as the rest of my life is quite normal.
Carol Lang. Carol's husband, John Lang,
was diagnosed with paraneoplastic syndrome in Sept. of 1988, at the age of 45, after a
year of hospitals, doctors, tests and a misdiagnoses of MS. John was a loving and caring
man with many attributes, not the least of which was a wonderful sense of humour. He was
also a athlete, a writer, a sketch artist, and a musician with a grade 8 piano in the
Royal Conservatory of Music. Before his illness he's was a Maintenance supervisor for
Fletcher Challenge Canada, Elk Falls Division. Carol and John have lived on Vancouver
Island, British Columbia, Canada for 22 years. They both grew up in the small City of
Kimberley BC. They were married Sept. 14, 1963. They have three children, Ray 34; Lori 33;
and Allan 29. They also have three grandchildren, two girls, and a boy. Carol continued to
support John through his many years of illness and would like to continue to be a support
to others with paraneoplastic. John fought a long and hard battle which ended on Aug. 25,
1998.
For a more complete version of John's story see: https://www.angelfire.com/bc/johnlang
