A Little History...
In the summer of 2013 my husband, Alex Houlding, was diagnosed with Behavioral Variant Frontotemporal Degeneration. This was a disease no one I knew had ever heard of. It gets lumped into a broad category that falls into the "other dementias" label at Alzheimer's get-togethers and informational sites.
We had known something was going wrong with Alex for a couple of years before the diagnosis. I have learned in the years since that it is not unusual for this illness to be misdiagnosed, and that was certainly the case for us. Cognitive impairment is not the first sign that something is going wrong. It is other things that define this illness in its earliest stages, and some of them are pretty weird.
Alex was losing things, forgetting steps in recipes, losing track of ideas and threads at work (not a good thing for a computer scientist), becoming less able to manage and focus on details, more aloof in conversation, more apathetic, He was getting sloppy - shaving poorly, not paying attention to his clothes or hair , and having difficulty reading maps and being geographically oriented when we travelled. He was not able to plan, not able to complete things, and strangely hyper-focused on other things, almost compulsively.
Many of these things might be signs of depression or "mid-life crisis." I made Alex go see his doctor and get an MRI. They reported that nothing was wrong, I was baffled, and I watched him get worse, and wondered why I couldn't get the doctor to take this seriously.
When we finally got to see a neurologist and then go through a neuropsych evaluation, the diagnosis was "mild cognitive impairment" with some unusual anomalies. When we finally got to the Mayo Clinic in 2013, doctors started talking to both of us, and zeroing in on the exact things that had been concerning me.
When we received the awful news (and I can still remember how completely sickened we felt), we asked, "What next?" The doctor shrugged her shoulders, and said, "There is no treatment. We follow you and you come back in 6 months." She gave us some pamphlets, listings of websites, and a DVD from a conference on TAKING CARE of someone with FTD. I immediately wanted to run the DVD over with my car, and I still have not watched it to this day..
We were both completely stunned - and Alex just said, "Boy you're really in the soup now. So we did what any right-thinking humans would do - we went out for an over-the-top dinner, drank too much wine, and came home and hung onto each.
Most people with bvFTD have NO insight into their condition, and this is certainly the case for Alex.. The "in the soup" comment was one of the first and last times that I was certain Alex had any idea that something was wrong. People like to tell me that's a blessing. When they tell me that I feel like punching them.
THERE IS NO "STILL ALICE" WITH THIS ILLNESS
Of all the things I want to say on this blog, one of the most important to me is to point out that we are not dealing with Alzheimer's here. Continuity of personality just goes away, and the existential questions we face with this are almost always raw and awful.
I could catalog all of the changes, and sometimes I do in my head, but really, it just makes things worse. It's like forcing yourself to watch a video of a funeral over and over again. But before I can even talk about what we do every day, and how we do and don't manage, I really need to write about the Alex that we all loved so very much before Alex 2.0 emerged.
When I met Alex, we were both working in the information systems area of B. Dalton Bookseller. I was just finishing up a degree in humanities, so naturally computer science would be the logical career choice for me. Alex had been raised in England, had a charming semi-English accent, a PhD in English (so computer science was the logical choice for him as well). I was the babe reading Proust on my breaks, and he was the hunk who could recite Wordsworth poetry. He was also training to run a marathon.
It was kismet. We "dated" for about 3 weeks, and moved in together after a month.
He has been my truest and closest friend, my most trusted confidante and advisor, the analytical balance to my emotional rants, the very involved father to our two children, one of the wittiest people I have ever met, and one of the most remarkably curious people I have ever known. No matter what we have gone through in our lives together, we had so many interests in common, and so many things that we loved to do together, that we always had great things to talk about and share. We went to the symphony together, we went to the kinds of foreign movies many people go out of their way to avoid, we travelled all over the place, hiked and biked, told stories, cooked and ate amazing dinners together, and just plain loved being together.
Alex was always more reserved and introverted than I, but he was a true romantic - writing and reciting poetry, tearing up at sad movies, and relishing every single moment of his children's growth (okay - maybe not EVERY moment of the adolescent years - but you get the picture).
He was physically graceful, a committed athlete, and self-disciplined to an extent I could barely comprehend. He was a speed skater, a cyclist, a singer, a brilliant thinker, a tinkerer, and a person who simply loved digging into the details of things to understand them. He was a very good public speaker, had been an actor in college, and he swore like nothing I've ever heard before when he was behind the wheel of a car.
When we travelled, we almost always argued about directions. He was almost always right.
Only the faintest remnants of these traits remain - but these remnants are what we work with every day, and try to nourish and promote every single day. Along the way, we have had moment of almost unbearable pain (sure - everyone says that, I know) but also some crazy days, some good laughs, some complete surprises, and a lot of love.
So the question for me is, "When is Alex no longer Alex and how on earth do I learn to let him go?" And if what we do and what we have learned can help one other person who is trying to come to terms with this disease, I really want to offer our example as a "teaching moment," that is perhaps a little more palatable and immediate than a DVD you get at the doctor's office...