Monday, November 14, 2005

My poor sweetheart...

Another bout of seizures last week. Two visits from the medics and two trips to the ER in an ambulance in two days. And another week-long stay in the hospital for H. A bunch of tests and more medication. And then home and "can't be alone" for a few days; can't drive for at least 6 months. I am happy that they are working to control his seizures (and it seems to be working now), but I'm also concerned about his other health issues.

We'll find out in a few days if the current HIV anti-viral treatment is working for him. He certainly looks and sounds better than a month ago.

What I'm most worried about is a degenerative brain disease that they discovered H has about two months ago. It's called PML (Progressive Multifocal Leukoencephalopathy), it's rare, and there's no cure. It basically destroys the mylein sheath around nerve cells in the brain and also destroys that cells that product myelin, so the body can't repair the neural damage. His brain is actually shrinking, fast, due to the loss of the myelin. It's sorta like having a bunch of wires bundled together, but some of them are missing insulation and shorting out. Hence the seizures. What they do know is that the best way to control it is to keep HIV virus levels low and we're waiting to see if that's the case.

H has had HIV dementia for a number of years; 8 or 9 now I think. So, he's been a bit forgetful, a little slow on the uptake in conversations, and kinda clumsy and strange sometimes. But now, with the PML, he's forgetting things like "back way" routes through the neighborhood that we have lived in for over 20 years, forgetting how to use computer programs that he once had mastered, and, most frightening is that recently he's forgotten how to tie his shoes and stands staring into space, "daydreaming" he says, for long periods. Sigh. He continues to be the sweet and very funny man that I fell in love with and I am greatful for that at least.

From the National Institute of Neurological Disorders and Stroke (

What is the prognosis (for PML)?
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.

Now, H's doctors tell me that "I've had patients survive for a year or two if we can get their HIV levels down" and "very few go into complete there's always going to be some progression." Sigh. He was diagnosed with PML about two months ago, which was when we though he would die shortly and when I started this blog. We don't know what to plan for...when he might die, for example. But I supposed that none of us really know that anyway, it's just that we all hope we live long enough and that seems far away.

My poor sweetheart. He's been so sick, in so much pain, and now, he's losing his mind and that seems to be accelerating. He says he's not afraid and I am grateful for that too.

No comments: