Wednesday, June 22, 2016

Becoming a Smurf for Science

Because of the work I do, I often find myself meeting with and talking to people who are involved in clinical research. It has made me an advocate for research, and I feel that people everywhere are missing opportunities because they simply don't know about what's out there.

Almost as soon as Alex was diagnosed, I began to trawl and every other web site, book, or pamphlet that might yield new information, insight, or hope. In the summer of 2013, there really wasn't anything out there - but we did try both Namenda and Rivastigmin. There was a slim chance that some portion of his symptoms might have an Alzheimer's component to them, and since there was nothing else, it was worth a try.

Then, a new drug appeared ready for Phase 3 research trial -  a tau disrupter known as leuco-methylthioninium. At first, it seemed like we would not be eligible because of age restrictions - but by spring of 2014, the criteria were changed, and we were able to be screened.

I would LIKE to say that this development was on the radar of Alex's doctors here in Minneapolis - but it really wasn't. We signed up for TRIAL MATCH the week after we were diagnosed, and they did not rush to contact us about this. It was our own effort and curiosity (and some of my "insider" knowledge) that got us on the docket early. Maybe it all would have happened at the same time anyway - I am just not a person who is very good at waiting, so I  went after it with a lot of energy, and a sense that time was of the essence.

Alex and I both felt  very strongly (and still do ) that we wanted to do everything we could to benefit others - and yes, of course, we were hoping that it would make a difference for us. But we were very aware that this would be a double-blind study - meaning that half of the participants would get the placebo, and half would get the real thing, and we would not know which arm we were assigned to.

This is a drug with really only two side effects. The first doesn't sound like much - the need to urinate more often and a stronger more urgent need to urinate. Okay - not easy, especially since Alex's dementia has made surgical intervention for enlarged prostate too risky.

But here's the second side effect - methylinium is an ACTIVE ingredient of this compound, and it is a vivid blue dye. Everything coming out of Alex would be a BRIGHT blue green which permanently dyes all kind of surfaces. Very special.

People asked me, "What about the placebo?" Well, if we were on the placebo, the fake compound would contain enough blue dye to have the same effect so that no one would be able to tell who was in the control group.  

As we got through our learning period being on the drug, we were finding splashes of blue EVERYWHERE in the bathroom. I joked with Alex that when he went to public restrooms, he should just tell people he was from Venus. But it was Laura who really nailed it when she said, "It looks like a Smurf exploded in our bathroom," and that describes it better than any other image I could give you.

When we visited people, I DREADED his using the bathroom - I was horrified when I saw white rugs or old (and therefore much more likely to stain) toilets in people's homes. I swear to God, this stuff will permanently dye some toilet seats in about 2 nanoseconds. 

As far as bedding and underwear goes - well, let's just say we keep trying our best. Supposedly, this stuff will lift with ascorbic acid. Yeah - kind of. Sometimes. In my darker moments, I would think, "If we are going through all of this and I find out we're on the placebo, someone will pay!"

But look - when you are faced with hopeless situation, you just learn to get creative. We got a fancy Japanese toilet seat that has a rinse and dry feature, we put protective shields on the bathroom walls, we found ways to BOOST the ascorbic acid, and we learned to be very open with people about this so that they would understand.  And we learned to accept the fact that by this point in time Alex quite literally has blue balls.

It is still a very exciting adventure. We know that we are lucky to get to play any kind of role in this. The research team that we work with is simply phenomenal - some of the kindest, most capable, most supportive and most responsive people I have ever encountered in a clinical setting. They are full of sound advice, they are sincere advocates, and when things get rocky, they understand and listen and offer whatever comfort they can.

Sometimes  out of nowhere, Alex will say, "When are we going back to Mayo?" and I know that's it partly because he likes seeing everyone there , and partly beause he hopes they're going to "fix" the blue thing.

Here's what I could never have been prepared for.

Not knowing whether you are on the "real thing" or not, and not knowing whether it is working or not can make you a bit insane. Any good day, I would be CERTAIN we were on the drug, and that it was working. Any bad day, I was sure we weren't. I would watch Alex like a hawk for any sign of deterioration or improvement, and when he would laugh at a joke or volunteer some information, or connect some dots, I was SURE the cure was working, and I would make sure that life woudl be full of actitives that would almost certainly re-build Alex's brain. (Sounds stupid, I know, but hope is a powerful drug, too).

At the end of the year, we were offered an extension - meaning that we could stay on until they decided whether or not to make the drug available. We are now on the real thing for sure, and we still do not know whether we were during the first year. At first, I thought that would trouble me. It doesn't anymore. It's just part of the deal and part of what we signed up for.

Recently, it is clear that Alex is really losing ground.I am absolutely unable to gauge whether the drug has helped Alex or not. I have no way of knowing how Alex would be if we hadn't done all of this - and no one call tell us that. But if this drug does benefit some people, then I will be thrilled that we played a part in it  and I have started to think of every single blue spot as a little victory for all of us.

This fall, the drug sponsor will publish their findings, at least that's what we think. If it fails (and it well might) I can only imagine how difficult that will be for everyone who has played a part in this.

When I see things on the web that say things like, 'Doctors don't want you to know that this one simple thing will cure dementia," I could scream. What I see when I go to Mayo is a team of people who have watched drug after drug fail, and had to be there for all kinds of people like us who showed up with hope and enthusiasm and came up empty. I can only imagine the rejoicing they will do when this disease gets cured - and there is no doubt in my mind that the day is coming, even if it might be too late for us.

Knowing what I know now, would I do it all over again? Unequivocally "Yes!"  This is one of the only ways I can think of to try ot make some good come from this - and if ANY of you are offered a chance to be a guinea pig, I will tell you that you have nothing to lose. Go for it!  If you need advice on removing blue stains, just ask!

Tuesday, June 14, 2016

Father's Day

Our wonderful daughter Laura, was born on Father's Day in 1991. If I close my eyes, I am pretty sure I can remember every minute of that day - but most especially I can remember how thrilled Alex was. He was a pretty reserved guy in general, so to see his excitement, and hear him exclaiming, "Ooh, Ooh Ooh! It's a girl!" was beyond wonderful at the time, and still is wonderful.

Laura's middle name is Alexandra. She and her dad have always had a close and sometimes contentious bond - and they have a lot in common. When she was younger, I worked part-time at home  - and when she was a bit older, we reversed roles, and Alex worked part-time so that he could spend more time with Colin and Laura.

He would tuck her in by singing some of his mother's favorite songs from "The Old Country," and would read to her for a very long time. Bedtime took forever at our house - but I know that's partly because everyone enjoyed it so much.

He helped her learn to read, attended very single piano and violin recital she ever was part of, drove her to lessons,  taught her to ride a bike, and encouraged her to climb higher than common sense would dictate when he took her to the jungle gym at the park.

He was a rigorous (but fair) editor when he was proofreading Laura's homework - and now that she is working on her college degree, she knows that her facility with reading, writing, and speaking is due in large part to him.

Laura lives at home with us while she goes to school and works pretty much full-time at a nearby vet clinic. When Alex was first diagnosed, I was very concerned about her staying with us through all this. I wanted to be kind, but I really thought that the best thing in the world for her would be to detach a bit from the home scene and find her own place. I was really concerned about the affect this disease would have on her and her brother.

Just a little medical fact here. Frontotemporal dementia strikes at an earlier age than Alzheimer's with a typical  age of onset is somewhere between 45 and 65. This means that a lot of kids Laura's age and younger are dealing with this, too - and it is hard for me to imagine how some of the very young families deal with this. We are fortunate that Alex was able to compensate so effectively through the earliest symptoms so that there is a long store of happy memories to sustain us all.

Anyway, when Alex was diagnosed Laura was adamant that she was going to stay close through the whole thing, and that there was no way she as going to move out. She has been a wonderful help to me in matters small and huge. She has had patience and stamina and kindness far outside of what anyone should expect of her. And she has gracefully taken on some of the unpleasant caregiving tasks with her own special style and sense of humor. And in that, she is just like her dad, who is steady and honest and kind.

But she doesn't call him "Dad" anymore. She just can't - and I do understand, because he doesn't act like her dad anymore. She knows, and I know that he still loves her - but emotional blunting and lack of empathy are a huge part of this disease, and that has made him very hard for her to reach.

And as these two holidays approach right on top of each other, I need to say that special occasions are TOUGH! I think that's probably true for most families that are trying to hold it all together. No matter how hard we try, these occasions serve to remind us of how thing used to be, and how much they have changed.

Trying to replicate Thanksgiving and New Year's and birthdays (and Father's Day) so that they will be the same and have the same meaning as they used to is truly a terrible idea. We have had some pretty bitter realizations while trying too hard to hang onto the past. Better to think of different ways to celebrate and look for new ways to be together and love one celebrate. So actually, when you run into people like us around the holidays, tread lightly. It can be a pretty sad time!

So this year, when we do the annual birthday dinner for Laura, Alex will not be joining us. It feels sad and shitty - and we hate leaving him behind.

But - noisy restaurants are stress-filled places for Alex. His entire body projects the high anxiety he feels in these places. We need to select the time and place carefully, alert the wait staff about some of the odd behaviors he might exhibit, and have a clear bathroom strategy. We also have to ready to leave early.

None of this sounds like a good birthday dinner for Laura. So instead, we will go out for dinner without him, Laura will let herself get a bit tipsy, and we will have cupcakes at home after the dinner. And that way, Alex will get to celebrate in way that will feel good to him, and Laura will get a party.

I know it will be sad. It is just another marker and reminder of something that Pauline Boss calls "ambiguous loss -" where the person you love is there, but not there.   My biggest hope is that instead of dwelling on that, we will just get together in bits and pieces to make a glorious whole, and celebrate that we are all here now.

And that each and every one of is just right - exactly as we are.

Sunday, June 12, 2016

Taking Care/Giving Care and Sharing the Load

After Alex was diagnosed, we tried to lead as normal a life as possible - but it wasn't long before it was pretty clear that we would need more help in getting through a day. The limitations started to get clearer. The future got scarier.

We joined a support group sponsored by the Alzheimer's Association. This turned out to be a lifesaving idea.

Initially, the  group format provided a general education in dementia. This was not easy stuff to hear or talk about, but it gave us some solid knowledge, some plans, and some inspiration.Most important of all, it gave us a group of new friends who understood us. Long after the formal sessions ended, our little family gets together once a month.

Caregiver support groups are what you mostly hear about, but our group consists of all of us, because we are all in the soup together.

So suddenly, in 2013, I guess I stopped being a wife and started being a caregiver?? I'm sorry, the three-year old in my head does not think of myself that way. I find the term limiting and an unhelpful simplification, and I think that with all the other identity shifting that is going on, it can feel pretty isolating. I don't mean to complain exactly, but by separating the world into caregivers and dementia sufferers, it seems like we're letting an awful lot of people and institutions off the hook , and being a little less than kind to "care partners" and dementia sufferers alike.

I could go on and on - but I won't. Except to say that I have pondered the words caregiver and caretaker, and wonder why we use one for people and one for lighthouses..It's something I'd like to talk about with Alex.

The people with dementia in our group are a pretty sterling cast of characters. The "impaired" friends include: a retired dean of chemistry from Northwestern who is an articulate and passionate advocate for government policy change related to these diseases, a management consultant and non-profit strategist (and French horn player), a retired lawyer, a business owner, a schoolteacher who helped support an autistic son, and a finance wizard (and winemaker). All have families who rely on them and love them, all are busy LIVING.

They did not stop being important or interesting people because of their diagnosis, and their caregivers did not stop being human beings with complete lives of their own. They are wonderful friends.

When we get together, we laugh and cry together and talk about our families and politics and all the other little and big things. No one is ever embarrassed , and we all understand when someone needs more time to answer a question, or a change of venue, or just a hug. Oh, and some of us sing together - more about that later...

At one of our earliest sessions, one of the other "caretakers," Jim,  was talking about his autistic son, John. Jim said, "When John was diagnosed, we realized that we would be able to travel and do everything that we had ever done before - only we would have to do them differently."

That really hit me. It's funny, because Jim doesn't even remember saying it, but that way of thinking and framing our situation became my mantra. I began to look for ways to make it possible for Alex to keep doing all of the things that give his life a sense of meaning and purpose, and try to become as light-hearted and resilient as possible.

I do NOT want that to sound lofty. It seems to me like a completely natural reaction to this disease, and frankly, I simply do not understand what else people would expect us to do.  This is not to say that I had or have any illusions about where we are heading with this. Only that we made a choice to live consciously with this disease, to face it head on and to continue to seize every good moment, and try to find ways to work around the crappy ones.

We asked Alex's best friend Craig, to hang out with him during the day when I was at work. Craig has been an absolutely critical piece of this puzzle. He was sick of his unrewarding job, I needed the help and I needed to keep working. We embarked on this idea wondering if it could work, and left lots of room to learn as we went along.

For nearly 3 years, Craig has helped Alex exercise, chauffeured him around, drawn with him (more about that later, too), taken him to chorus rehearsals, helped him get some household chores done, and taken him to a woodworking shop where they build beautiful tables and benches together. Knowing that Alex is cared for by someone who cares so much about him makes it a million times easier for me to keep working and helps me to be a little bit fresher when I am home with Alex.

We are grateful in countless ways for the steady patience and friendship he and his wife, Chris, graciously offer up.

I am making this sound way easier than it is. It is a lot of work to put the plans together, and things can and do fall apart without warning, but I am absolutely sure this is how Alex has been able to do as well as he has for as long as he has. It would not be possible without all of the wonderful friends and family who help, and without the compassion and flexibility my office colleagues have shown as we figure it all out.

And just because I am feeling cantankerous tonight, I want to say that politically and socially it is simply ridiculous that each family that takes this journey has to improvise like this. I simply cannot tell you how many people have told me, "Remember to take care of yourself. Self care is important."

Well - if there were more CONCRETE support systems in place for all of us, caregivers might actually manage to find the time for themselves. The emotional toll, the perpetual planning and managing are not easy to manage even with a lot of support. And along with everything else that keeps caregivers up till 3 in the morning, worrying about how to pay for it all gets front and center -even for those of us who have nest eggs to draw on.

If I had more time to advocate, our legislators would be heartily sick of hearing from me. I am guessing that's why more hasn't been done -  because the people who need the help just don't have room for one more thing.  But also because pitying looks are easy to give - and actual money and infrastructure and policy take time and effort. 

So, we cobble it together - there are no easy answers. It is unchartered territory for each and every one of us - and I am beyond grateful for the many people in our lives, in and out of our support group, who "get it." I am certain that as my generation ages, and the staggering costs of this become clear, policy will start to change.

But all of that change has to start with softer hearts and open eyes and ears. I  think that the shifting has begun - I think a new generation will not tolerate this way of managing these diseases. In the best world of all, these diseases will be cured and will no longer be taking their toll - but in the meantime, wouldn't it be wonderful if we came up with some new models and ways of helping everyone through this?

Wednesday, June 8, 2016

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.


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...