Care

You may tire of me as our December sun is setting
'Cause I'm not who I used to be
No longer easy on the eyes
But these wrinkles masterfully disguise
The youthful boy below
Who turned your way and saw
Something he was not looking for
Both a beginning and an end
But now he lives inside someone he does not recognize
When he catches his reflection on accident 

-Brothers on a Hotel Bed - Death Cab for Cutie

Of all the suffering ALS creates the most overlooked is the suffering it inflicts on primary caregivers. For every loss the patient endures, someone has to pick up the slack and that person is almost always the caregiver.  Think about that, you watch your loved one slowly die and you are expected to be their nurse /medical aid/social worker  and more. Your workload and stress ratchet up as your loved one declines. It is hard to imagine a scenario more likely to result in major depression. I do not know why we put so much burden on spouses or other family members but it is the standard practice in this country. Why Stephanie is expected to regularly perform tasks that Medicare considers to be "skilled nursing" with little or no training is beyond me, but that is our system at the moment.

No ALS caregiver, not the unpaid ones anyway, signed up for any of this nonsense. If you ask them most will put a brave face on it, but nobody actually wants the job. They have been thrown one of life's biggest curve balls and have only the inevitable loss of their person with ALS to look for release from their duties.

Of course all this radically changes the relationship between the now patient and now caregiver. More often than not they are a married couple as is the case with me and my wife Stephanie. How caregivers react to the new reality varies greatly. Many times a caregiver simply can't handle things and separations are not unheard of. I am very fortunate that Stephanie is as strong as she is because without her advocating for me I would be much worse off. Thanks to my situation her life is nothing like what she expected but she still fights for me. I have gone from a fit and active husband to one who is pretty much only good at making things wet and/or smelly. I can tell she hates having to be so involved in my personal care but she does what needs to be done. All this familarity with my every bodily function as well as the day to day stress has put a damper any real intimacy, just one more relationship challenge.

We are fortunate enough that we have been able to privately hire a couple of part time assistants to give Stephanie a few hours a week off. We are lucky to have found two outstanding aides, I look forward to my time with them and I know Stephanie really appreciates their efforts. People of low enough income who are on Medi-Cal get full time assistants as well as pay for family members who are providing care. It hardly seems fair that the surviving partner is expected to go essentially bankrupt before such care will be provided.

Caregiving in ALS is overlooked and under appreciated. The caregiver of a person with ALS has one of the most difficult jobs I can imagine, one which will only end unhappily. My caregiver may not  always feel like it, but she is the rock I depend on and words alone cannot express my gratitude or how sorry I am that her life has become so dominated by my disease. ALS is merciless. 

On Loss

Death,  dying and the like are the subject of much human study.  Generally what you'll talk about is the black line of no return. Dying of ALS is just like dying of anything, I imagine, except that you get to watch as the things that made you feel alive slip away one at a time in slow motion.The lesson ALS has to teach you is that you have a whole lot of dying to do before you get to the line.

At first the losses are small.. can't open a twist-off bottle cap anymore... can't wear contact lenses anymore... then they eat away at the things that make us alive.  Can't have a simple conversation... Can't eat solid food... Can't be the husband Stephanie deserves ... Can't ride a bike.  So many losses that you can't comprehend it all in real time. Only later do you discover that you can't get your bike gloves on anymore. You laugh and make the best of it, but some part of you is forever gone and you know it.It will happen a million more times.

Your personal life suffers a similar fate. Being a natural introvert, I never had very many people I was very close to.  I did have quite a few"bike friends", however.  I don't see much of them these days, appearing mostly like a ghost on a FaceBook comment.  When, however I run into someone in real life there is an understandable tension. While I have (mostly) had time to adjust to my changes, they are seeing maybe 6 months of decline all at once and you can see it in their faces.  Everyone says you look great, but you don't.  A rare few actively avoid me. Everyone deals according to the best of their ability to do so. 

As I get more and more locked in with my chair, I feel less and less part of the world. As I loose the ability to perform my own self care more and more of that duty falls on Stephanie  and the assistants we have hired. Between them  I am definitely not lacking for hands on human contact but strangely feel like I am. I think the problem is the chair and all the other equipment between me and everyone I interact with. My human contact these days no matter how kind my caregivers are is all fairly clinical. I don't really get to snuggle up to someone on the sofa or lie with my sweetie in bed. 

Really the hardest thing to deal with is what ALS has not taken from me.  I am still me. I still have a full set of human needs and desires but virtually no ability to do anything about them.  I still feel things just like I always have,  though my reactions aren't what they were.  I can see the people around me getting on with their lives, lives upon which I  can only add difficulties. I can imagine a life for Stephanie that does not involve me, and it both kills me and gives me strength.  I am almost a completely normal person, just one small problem.

Time and Camelot

So, so you think you can tell Heaven from Hell, blue skies from pain.

Can you tell a green field from a cold steel rail?

A smile from a veil?

Do you think you can tell?

  -Pink Floyd,  Wish you Were Here

Lately I have been thinking about the nature of time. I suppose it is a natural thing to be a bit preoccupied with given my relative lack of it. Whatever the motivation, the subject fascinates me. I have spent time trying to understand it as a physical phenomenon, Time, it seems, can be stretched, it can be compressed but the arrow of time always points in the same direction.

The physical aspects of time,  while fascinating, has really only one feature that really affects the human experience of time:  the arrow. On a day to day level time is constant, it neither slows nor speeds except in our heads. We and everything we know exist on the bleeding edge of time, an unspeakably profound mystery we take for granted every moment of every day.

Now humans, like any animal, are designed for survival which tends to skew our perception. We tend to be threat oriented which biases our perception and can leave us quite stressed at any given moment. It is particularly interesting because after enough time has passed nostalgia takes over and what may have seemed a  particularly stressful time might have something in it that becomes a cherished memory.

In my own life there are a few years that stand out like no other period, roughly 2001 to 2012. For me those years are Camelot. I ruled  with my queen and we adventured with our young knights. Now just like the real Camelot things weren't perfect, there were dragons to battle and barbarian invasions to repulse but we always found a way. Like, I suspect, the real Camelot it didn't feel much like a golden age at the time, but nostalgia has worked its magic. Those moments have passed, I am now just the broken fisher king.

   ...         

 I sat upon the shore

 Fishing, with the arid plain behind me

Shall I at least set my lands in order?

London Bridge is falling down falling down falling down

...

-T.S. Eliot, The Waste Land

In the end all anyone has is the present moment and the possibilities moving from one moment to the next presents you with. Choice is what makes you alive and so much more than anything else in the universe, the ability to choose how to put your possibilities together. As my own possibilities become more and more limited my ability to partake in life's  activities… work…  self care…  food...  drink...  sex...  I become less and less alive and the gift of each moment becomes more starkly apparent. Every one of us builds our lives moment by moment, sometimes our options are pretty limited, but even now, for me every one is a gift.

That brings me back to Camelot and on to my final thought for today, one which I offer without proof. Every moment is eternal, existing somewhere like a bubble in spacetime. My Camelot still thrives somewhere just out of touch and always will.

Update

It's been a number of months since my last post and life keeps moving on as it always does. ALS is slowly but unrelentingly progressing.  I've been intending to write here more often, but struggling to get started, however, inspired by my walk on a beautiful spring day, here I am.

The last few months have been everything from wonderful to incredibly frustrating.  The support I've received from family and friends has been nothing short of spectacular.  The Ride to Defeat ALS was a spectacular success and a great party. The disease, however, relentlessly progresses.  Things that used to be simple now are anything from difficult to impossible.  The worst losses have been in my hands and arms, but my legs have started to be affected too.

I've really struggled writing an update to my status, and I'm really not sure why.  I think, maybe, it's because so much has happened since my last writing and I don't know where to start.  I've had a number of ideas, but never got started on them.  Why?  I don't know but this post is a start on working through the backlog.  I intend to make this a habit, so stay tuned.

Blessings

There are days in my life that I will never forget, graduation, our wedding day, the boys’ births, and foremost in my mind these days, May 1, 2013, the day Kevin was diagnosed with ALS/Lou Gehrig’s Disease.  Another recent day that looms large in my memory is November 9, 2012.  That was the night we flew to Thailand for an amazing two-week adventure.  

We arrived in South San Francisco early and went to a local restaurant for dinner before our flight.  I will never forget the moment sitting across the table from Kevin when he told he that he thought there was something really wrong with him.  I was scared, but I think the knowledge that something wasn’t right led us both to enjoy those precious two weeks in Thailand all the more.

I don’t think I could ever properly say how much Kevin means to me.  I love him intensely.  I love him passionately.  Kevin is my soul mate, my best friend, and my other half.  I protect him fiercely and am frustrated that I cannot protect him from this disease.

It didn’t take me long to find a way that I could do something to support Kevin, The Ride to Defeat ALS in Napa on September 28.  Not only did I sign myself up for the longest distance offered (100 miles), I was brave enough to sign Kevin up for the century ride also.  If he’s training to ride a century at the end of September, he’s not going to able to lose much strength between signing up in June and riding in September.  If I can, by sheer, will keep Kevin strong, I will do that.

I know that I am blessed in so many ways.  I have been overwhelmed by the support of our family, friends and community.  So many people in countless ways have shown their support for us.  If you visit the Team Denison page at the Ride to Defeat ALS website the support is obvious.  Sometimes from places we wouldn’t even have expected, including complete strangers.  Thanks to our families who have supported and joined the event, along with our friends who have done the same, and the local race community especially Sacramento Triathlon Club, Team Revolutions and Cycling Development.

If you’ve read this far, I’ll get to my point.  We started with a team fundraising goal of $2,000, we quickly raised that money and bumped our goal to $5,000, and then again to $7,000.  This week we again bumped our goal to $10,000.  We have a large  team and many individuals have reached their fundraising goals, but some still need help.  The ALSA asks all participants raise $150.  If you are reading this and can help those on our team who are below that number, I would be grateful.  If you are reading this and want to join Team Denison for the ride in September we welcome you.

Silly Things I Do

Ok, you've been diagnosed with ALS... what do you do now.

Rilutek, the brand name version of Riluzole.

Your doctor won't do much.  The only thing that treats ALS is Riluzole, and that hardly does anything to slow down the disease.  Pretty much the only thing the clinic can do is help alleviate symptoms once they get bad enough.  BiPAPs for forcing air into your lungs once your diaphragm starts to weaken, Nudexta for any Psudobulbar affect you might be experiencing, other things along those lines but nothing to treat or slow the disease down.  Some (most?) just do what the doctor tells them and wait for the disease to reach it's inevitable conclusion.  Doing nothing in the face of a terminal illness just didn't seem like a good plan so I started researching.

Now it might seem to be a bit silly for a layman like myself to try to come up with his own treatment for ALS when medical science has been unable to do so for so long, and maybe it is a bit.  Once I started reading, however, I realized that there is a rather large body of studies and anecdotal evidence indicating various substances and activities that help prolong the survival of people with ALS (PALS as they're know in the ALS world).  There is a good deal frustration amongst PALS regarding the state of ALS research, and rightly so.  The pace at which new treatments are researched and trialed for a relatively rare disease like ALS is frustratingly slow.  The sad truth is that even if someone discovered a new drug that was a 100% overnight cure for ALS today, it's unlikely that it would get approved by the FDA in the average 3-5 year life span of a person diagnosed with ALS.

With the medical establishment no help it's off to Dr. Google to figure out what to do next.  The best place I've found for advice and summaries of research are the forums on the ALS Therapy Development Institute (ALS TDI).  There are many well read and knowledgeable people on the forum, all seeking ways to treat their disease.  The research papers are a bit daunting at first, but you do get some ideas with how to manage the disease.  One long time member of the forum has a rather extensive protocol of OTC supplements he claims has kept his ALS from progressing for 9 years.   Here's the list of supplements he's taking:

Light beer, 32-64 ounces (source of ethyl alcohol, and rehydrating agent)
Eggs, a source of lecithin, as well as other good nutrition: two a day.
B-12 methylcobalamin sublingual: 5 mg
Acetyl-L-Carnitine 1.2 g
ALC Arginate 1.3 g
Alpha Lipoic Acid 1.2 g
N-Acetyl-Cysteine 2.4 g
Taurine 2 g
Trimethylglycine (Betaine) 750 mg
Ester-C 1 g
Gamma tocopherols + tocotreinols 470 mg
High gamma vitamin E mixed tocopherols 480 mg
CoQ-10 super ubiquinol 100 mg
B-complex “Balanced B-50” Nature Made one caplet
D 2,000 IU
Flush-free niacin (inositol hexanicotinate) 320 mg
Magnesium citrate 320 mg
Selenium 200 mcg
Milk thistle extract 80% silymarin 350 mg
Lithium orotate 10 mg as lithium
LEF optimized Ashwagandha extract 375 mg
LEF super bio-curcumin 800 mg
LEF mega green tea extract 1,450 mg
Resveratrol 320 mg
Cordyceps 520 mg
Omega-3’s: variable, typically 1 gram/day

 Wow.  He estimates he's spending $300 a month on supplements. I haven't started anything nearly that extensive yet, but I have learned some interesting things.  Strange and counter intuitive things like the fact that a low body mass index (BMI) both increases your risk of contracting ALS and decreases your survival.  Alcohol is good for ALS patients, as is having high cholesterol.  While I'm not about to become an overweight alcoholic, it does open your eyes to the fact that you really need to have an open mind about what to do.

So what am I doing?  Mostly simple things... avoid weight loss, a few supplements that may have some efficacy in treating ALS, a daily bit of alcohol.  I'm still riding my bike regularly, though I avoid going hard as it takes a lot of time to recover from hard efforts.  I try to avoid sitting too long at work and I do some exercises I hope will help stave off the progression of ALS.  I walk a lot.  As I research more, I'll probably add more supplements... who knows, I may even end up with a list like the one above (probably not).  The takeaway from all this is that you've got to do something.  That "3-5 years" statistic really seems to apply to people who just do what their doctor tells them.  It may all just be psychological, but from what I've seen is that those who are actively trying to go beyond what they're being told, the average seems to be much longer and I intend for that to be the case for me.

Ruminations

Ruminate: from the latin ruminatus, to chew the cud, or to muse upon.  To go over in the mind repeatedly and often casually or slowly.  - Merriam-Webster

I've been living with my ALS diagnosis for  nearly three months.  Not surprisingly, it's been on my mind... almost constantly... ever since. As you would suspect, living under what is essentially a death sentence refocuses you on what's important... family, friends and making the most of your time with them.  What is surprising is how much that refocusing clarifies your outlook on life and, at least for me, actually improves it.  Sure, you still have to deal with the day to day nonsense, bills, messes, yardwork, whatever, but the weight they've been putting on my mind seems trivial in comparison to how it seemed before.  

http://en.wikipedia.org/wiki/File:Belted_Kingfisher.jpg

I was riding my bike to work the other day along the Folsom South Canal, which, if you've never ridden there before, is basically a boring  access road that follows a canal. There's a fence separating the trail from the canal and as I rode along I noticed a Kingfisher sitting on a fence post.  When I got near the kingfisher it flew off, further down the fence.  As it attempted to land, I again startled it into flying even further down the fence.  We continued this dance for a half-mile or more, until the bird decided to cross the canal and get completely out of my way.  The way the bird was trying to get away from me reminded me of the way I tend to deal with my day to day problems.... keep going down the same path only to find your problem keeps catching up with you.  When you finally decide to take a whole different course, you might actually get away from them.  Of course if the bird just decided to sit there and let me pass, he would have found out I was actually harmless to him.  Either way the key was realizing that what you are doing isn't working and you need to try something else.

Anyone who knows me, knows that I really like racing bikes.  I've always been competitive, and enjoyed being one of the "fast" guys.   Up until May it was a very central part of my life, something I was a bit obsessive about.  I'm not fast anymore and, all things considered, I'm cool with that.   At some subconscious level I already knew it but I'm really starting to see that what was really important to me with cycling wasn't necessarily collecting results, instead it was, and is, the whole experience... the people, the preparation, most of all, the rides.  The way that being in a race or just an intense training ride makes the everyday problems just fall away and you get those fleeting moments of perfect clarity.  ALS sucks, in every way, but the way it has forced me to look at my own mortality and laid bare that which is really important strikes me as being something like a race.  Every one of us is ultimately mortal, and examining ones personal mortality should be anything but a morbid exercise... it should be a chance to examine what you really want from life and what's important. All anyone is guaranteed is this one fleeting precious moment in which we now exist, make the most of it.

Twirling round with this familiar parable
Spinning, weaving round each new experience
Recognize this as a holy gift and celebrate this chance to be alive and breathing

This body holding me reminds me of my own mortality.
Embrace this moment. Remember. we are eternal.
all this pain is an illusion. 

Tool - Parabola (2002)