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Wednesday, February 22, 2006



In late December, Mary Lee Coombs noticed some numbness in her right arm. Shortly thereafter a friend remarked that something seemed wrong with her face. Within a few weeks the numbness had extended to her right leg, affecting her ability to walk, and she went to St. Michael's Hospital to get checked out. She was admitted and the investigation began. Her symptoms were consistent with a problem at a particular place in the brain, and indeed an MRI scan showed a spot there. A later MRI scan showed the spot as having become larger. Meanwhile she developed double vision and her speech became significantly affected. Her right side became almost useless.

A disease called PML, Progressive Multifocal Leukoencephalopathy, was suspected, and eventually the "JC" virus which causes PML was found in her cerebrospinal fluid, pretty much confirming PML.

Information about PML can be found here. The bottom line is that it destroys white matter in the brain, impairing the transmission of nerve impulses, causing "weakness or paralysis, vision loss, impaired speech, and cognitive deterioration". So far Mary Lee is suffering from the first three.

According to the U.S. National Institutes of Health, "There is no cure for PML, nor is there currently an effective treatment for the disorder." It usually just gets worse and worse, and quickly. "The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset, but there have been a number of reported cases with survival for months to years."

PML attacks only people with weakened immune systems. Several years ago, Mary Lee was diagnosed with chronic lymphocytic leukemia (CLL), a form of blood cancer. If you didn't know that, it's because she kept it fairly secret. The median lifespan from diagnosis was seven years, so for some time now she's been aware that her life would likely be cut short. She's had a number of rounds of chemotherapy (a mild form without significant side effects), which were successful in keeping the leukemia in check to date. But evidently her condition allowed PML to develop.

Mary Lee is still at St. Michael's Hospital, and has just been moved to the Queen Wing, 4th floor, Inpatient Palliative Care, room 4007 a.k.a. 407 (there are two rooms from one doorway; it's the one on the right). If you wish to visit her, please bear in mind that she can't speak very well, which makes normal conversation impossible, and that her vision has been affected a little (but her hearing is fine). Also, she sleeps a lot so there is no assurance that she'll be awake when you visit. Visiting hours are 11 to 7. On weekends, at least the afternoons, there tend to be quite a few visitors, which tires her out and in any case makes it difficult to have much of a personal visit, so I recommend visiting on weekdays instead if possible.

If you have a message for Mary Lee, please email it to me at 1@sympatico.ca and I'll read it to her at my next opportunity.

I'm so sad to hear of Mary Lee's plight. She is typical of the really excellent and interesting people we used to have at IPSA - people that made the company a living legend.

Despite the realities of life, Mary Lee will live on in our hearts for a long time to come.

David Keith
I'm sorry to hear about Mary's unfortunate fate and I wish to offer my sincere condolences. Although I did not know her, reading this blog I realized how wonderful person she was and what a cruel and unjust fate she had. Dealing with the progressive multifocal leukoencephalopathy pml symptoms must have been hard, especially for the family taking care of her and seeing her slowly fade away.
I hope that the pain left behind after her passing will be lifted one day and replaced with all the wonderful memories she left behind.
Note from the maintainer of this blog: I'm going to leave Christine Montgomery's comment in, but want to note that the site she links to is from a U.S. law firm that is looking to represent certain PML patients. Apparently some people who have diseases such as multiple sclerosis take certain drugs that weaken their immune system, which increases susceptibility to PML. (Mary Lee's situation was different. Her immune system had been weakened by chronic lymphocytic leukemia, which she'd had for years, and even then her oncologist had never before had a case of PML's developing among any of his patients.)
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