Monday, October 29, 2012

Stimulants for Concussion

I'm now in my sixth month of recovery from my most recent concussion in May 2012 , which is deeply into what is called persistent post-concussive syndrome (PPCS) and not pleasant territory.

For those who haven't read my other posts on this, my recovery is complicated by two prior concussions in January 2009 and June 2010; and my age, now 48.  While the symptoms of my first concussion (a fall on a boat ramp to the back of my head where I briefly lost consciousness) faded to almost nothing after a year, they were "revived" when I had another concussion six months later.

I did not recover fully from the second concussion (a kick to the front of my head, a bang to back of it as I hit a wall), and though I returned to work after 10 weeks I had to make a lot of modifications to how I worked.  The most persistent problems were:

  • Migraines/Headache/Neck Pain
  • Noise/Light Sensitivity
  • Mental Fatigue
  • Lack of Concentration/Distractible/Scattered/Foggy
  • Disorganization
  • Problem-Solving/Generating New Solutions
  • Insomnia
They were worse when I was tired, and I was more sensitive to stress (would lose appetite, get more socially withdrawn) than I had been before, when I had a damned robust imperviousness to stress that allowed me to survive and thrive working psychiatric inpatient units for fifteen years.  I was quieter, but since few people minded :) it was mostly me who noticed these problems.

I focused on caring for my body, which already had back problems to manage most days.  My neck pain responded well to physical therapy.  I slowed down to be more competent at what I was doing.  Working at a high speed on multiple projects and problems simultaneously was no longer possible so I didn't try, and I started new projects (teaching, training, program development) that I could do in my office instead of on the units all the time.  I lost track of what I was thinking/saying  sometimes but lots of people do.  I was managing.  I began writing again, because I could do it in quiet, and that's how I worked best;  I could also edit out my mistakes if I took the time to write and re-write (even something like this blog post) over a week or two.  The headaches went down to every few days.  I let go of who I was before, as we all do as we age anyway. I found ways to be productive, slowed down the most by the secondary problem of insomnia. My internal sleep clock had been re-set somehow, and I was up by 3:00 almost every night. I read a lot rather than toss or turn.  The lack of sleep worsened the cognitive problems but I got good at covering for them, anticipating them, not overreaching.

With my third concussion (an assault, fall to the back and top of my head) the pattern continued, with the problems that were background-issues from before were again revived, with more added on:  nausea, dizziness and some balance problems.  These new "somatic" symptoms have all resolved, but the same problems I had from the second concussion are just not going away.  The first neurologist I saw was very nice but said there is no "treatment" for concussion and therefore he would just do periodic consults--he suggested I get treatment from a rehab center, like Easter Seals.  The second neurologist said I needed new neuropsych testing.

The testing was difficult, and the results hard to hear.  The psychologist said my core verbal and visual cognitive abilities are still there but hard for me to access because my focus/attention/mental effort were all impaired and my processing speed very slow.  And, she wondered if I had tried hard enough to get the best results.  There was a lot of variability (I could do some hard tasks on one day, and not an easier one on another day) which brought up the issue of whether I was malingering, which is trying to look impaired when you're not (or trying to look worse than you are).

This was a hard hit for me.  For someone whose pride and self-image comes from not only being intelligent but being a hard worker, in the hard field of child protective services and mental health treatment, taking on more, toughing out pain and loving every challenge thrown my way, to have my integrity questioned was kind of brutal.  Though nothing was "conclusive" and there were interesting patterns in the test data that could have been explained by the concussion and the cognitive symptoms I was having, the results were reinforced by the statements of my treating neurologist, both before and after the testing, that I "shouldn't" be having nearly the level of problems that I do.

Now he's a tough guy himself.  He tells me he sleeps 3-4 hours a night so what's the problem?  He also seems fixated on the numbers of teenagers their office assesses for concussion, all of whom seem to have their symptoms resolved within 3-6 months, often sooner.  He talks often of "spearing" injuries from helmets and "head plants" and "falls from high bars."  Makes you wonder why the heck I have my kids playing organized sports, for sure.  Also, it seems there is something suspicious about my lingering symptoms fall into two categories, somatic and cognitive.  The somatic were worse at the onset of each concussion, with the cognitive symptoms worse later, but I still have some somatic problems (headache, noise/sound sensitivity) and most people have only one or the other, not sure why.  One article (on teens) explains it:
Adolescent Concussion types.  There is also a link on the Beth Israel site that explains the cognitive, somatic, and emotional (3 types) of post-concussive symptoms.  It's true.  I have both and that's unusual, and unusual is suspicious.

So here we are this week in the Tough Guy doctor's office, and he says maybe I'm interfering with my own recovery in some way and I've dragged my husband with me to help me with the back-and-forth about why I'm not doing better and what is wrong with me.  I say I'm a psychologist, I understand about psychological factors interfering with recovery but it really doesn't feel that way and he says it never does and I'm feeling wretched and embarrassed and he's trying to get me to go somewhere else for treatment like Yale or Mayo Clinic and get out of his hair and I'm saying let me just go back to work if you don't think there's anything wrong with me and the doctor says fine, try it and then my husband says "WAIT!"

He then explains to the doctor that there's some battle of wills going on but what he's worried about, what he sees, is that I made a lot of mistakes and bad decisions and couldn't we possibly try some medication before we send me back into a work setting to make them there too? This seems to sway the guy's thinking and he hands over an Adderall script and says call him in two weeks and tell him if it helps, if not we'll try Paxil.


Now if you're a doctor maybe you know that sometimes after wrangling with a patient for a while sometimes you just give in and give them a script if they want one.  And maybe that's what happened.  But the end result was that I started Adderall XR (10 mg) on Saturday and it was fascinating.

I was at a big scrapbooking event, and forgot pretty quickly that I had taken it before I left home.  As I sat there, aimlessly sifting through pictures, sorting, stacking, trying to find a pattern in them that would allow me to do something productive with them like glue them to the paper, I was irritated as usual by the chatter around me, the music, the lights, the movement.  Last month when I went I left and sat in my car for a while. This was a good alternative to tearing  off my neighbor's bloody bluetooth earpiece because it felt like she was shouting things I didn't understand right into my ear.  I got a headache.  I couldn't eat.  And I got absolutely nothing done, when I used to be able to do 12-20 scrapbook pages a day for the books I keep on my kids, my travels, and special events in our lives.

Exactly three hours after I took the Adderall I looked up and saw that I had within the past hour sorted all the pictures, taken small piles and made 4 pages in a flash.  The chatter from my next-seat mate was muted, like I had cotton in my ears, and my irritation with all those other distractions gone because I no longer noticed them.  My daughters were across from me and I attended to them but otherwise I was in "the zone."

It was blissful.  I realized how much I miss it.  That place where you can just block out everything you don't need to pay attention to and put all that observing brain power into what you do?  I haven't been there in almost 2-1/2 years and being there brought me such a sense of everything was going to be okay.  If I could have taken my neuropsych tests on Adderall I feel like I could have rocked it.  I was back!

Sunday at home was much the same--calmer, more focused, not as distracted and bothered by every little stimulus around me.  For the first time in years I didn't glare at my husband when he wanted to put on the bedroom television because it wouldn't pull my attention from the reading I was doing.  I could block it out.  I realized how exhausting it was to try to do that, unsuccessfully, all day long.  It's why I have wanted to hole up in my room for the past six months--all that stimulation out there in the world is too much for me to process, especially if I'm trying to do something other than just take it in and react to it.

So, I looked up using Adderall for PPCS and it sounds like it typically does a pretty good job, though it's unclear why.  It makes depression better (though anxiety worse) and the cognitive symptoms of PPCS much better.  The article I link to above says Vyvanse does an even better job.  People who take it say 20mg is a typical long-term dose, but that it becomes less effective over time (you build tolerance to the amphetamine) and you'll want more to get this same effect.  Also, the side effects (insomnia, loss of appetite) are already problems for me, and while they haven't been worse yet, they might get there.

Sigh.  The neurologist has already said not to get used to it because he won't prescribe it to me for years, it's just a short-term experiment.  There's no evidence that you can get ADHD from concussions, nor that long-term ADHD medication is indicated.  And yet...that's sure how it feels.

Sunday, October 21, 2012

Stages of Love

Illustration by Mikael Häggström
I write and read a lot of romance and have been searching for some template as I to of what the stages for romantic love are.  This is what I can tell you so far:  there really isn't one.

We're getting better at understanding some of the biology of love, and the different neurotransmitters, hormones and chemical reactions that accompany attraction, lust and attachment.  Some (actually) many people mistake these for the stages of love, but they're not--they all could happen in the course of an intense 24 hours or less (think of the movie Speed, I think that took place in less than 8 hours).  It's really the Stages of Sex, even for those in long-term relationships--flirting, hook-up and cuddle.  Still, if you search for "Stages of Relationship" or "Stages of Love" or even "Phases of Marriage" these three will come up.  Don't be fooled because it's obviously a bit more complicated than that.

I thought about the five stages we use for dealing with stress, grief, illness, addiction and/or death (Denial, Guilt, Bargaining, Depression, Acceptance courtesy of Elizabeth Kubler-Ross, 1969) and how though they don't apply to everyone, and lots of more recent research says we jump around between these phases and ultimately most people are resilient and don't "work their way" through them as stages at all, they still help.  They're aspirational in a way, so we know that there's light at the end of the tunnel, we can get to the place where we've adjusted somehow to whatever life trial we're facing.

We also know something about life stages in general, much courtesy of  Erik Erikson who was trying through the forum of Ego Psychology to show how getting stuck at different phases, not getting needs met there or working through the problems made later stages more complex.  It also is really helpful let me tell you, when trying to figure out why a sixteen-year-old child you have nurtured and ferried and devoted years of your life to suddenly pretends you don't exist when you're at the mall together.  Oh, yeah, social stage, got that.  Isn't he developing so nicely?

Approximate Age[2]
Significant Relationship[2]
Existential Question[2]
0–2 years
Can I Trust the World?
Feeding, Abandonment
2–4 years
Is It Ok To Be Me?
Toilet Training, Clothing Themselves
4–5 years
Is It Ok For Me To Do, Move and Act?
Exploring, Using Tools or Making Art
5–12 years
Neighbors, School
Can I Make It In The World Of People And Things?
School, Sports
13–19 years
Peers, Role Model
Who Am I? What Can I Be?
Social Relationships
20–24 years
Friends, Partners
Can I Love?
Romantic Relationships
25–64 years
Household, Workmates
Can I Make My Life Count?
Work, Parenthood
Mankind, My Kind
Is It Ok To Have Been Me?
Reflection on Life

This "Romantic Relationships/Can I Love?" life stage can take a large chunk of our waking attention for the majority of our adolescent and adult life, from listening to "Couples Court" on the radio in the morning to "Delilah" at night and just about every movie, song, book and significant-other interaction in between.  We want to be good at relationships.  We want to love and be loved.  Yet we don't have a clue much of the time as to how to go about it.  Isn't that interesting?

So, here's my attempt to synthesize some of the theories that make the most sense to me.  Tell me what you think.  

1.  Infatuation--See Attraction and Lust, above.  This is a very exciting stage.  It lasts--not that long.

2.  Accommodation--He likes football games on Sunday, you like walks on the beach.  This stage is all about trying to find the ways to get both your needs met.  It doesn't always work, and that leads to power struggles, squabbles and hurt feelings if you don't feel cared about.  Most relationships break up at this phase, as one or the other person doesn't feel the fit is right.

3.  Challenge--Most people don't feel comfortable moving forward to a commitment without facing a hurdle and managing to get through it as a couple.  This can be anything from facing student loan debt to the illness of a parent or the re-appearance of an ex.    If you make it through, you have strengthened your attachment to and dependence on each other and are typically ready to work towards the next stage.  

4.  Commitment--This is when you both say to each other that you are in life together.  Merging of lives happens here, with all its accompanying bumps in the road.  This takes varying amounts of time but once you're there, you know it.  In this stage you dance back to Accommodation and Challenge phases, often out of sync and you're just working it through.  Or not.  After commitment is the highest risk time for infidelity, but this is because breaking up and walking away become very difficult and often the dissatisfied partner wants to try something else first (or wants to try to have the committed relationship and the infidelities both). Typically, this stage involves some combination of engagement/ living together and/or marriage.  Families are blended, checking accounts merged.  Many models of love stop here but this isn't the end, it's really just half-way.

5.  Life Balance--From here forward, almost every life decision made by one partner has an impact on the other, and the back-and-forth between the two of you is almost constant--this job or that?  One kid or three?  You sleep in or me? Sex now, later or both?   And which of us is going to take our adult child to the Emergency Room for an all-night, three-bag IV rehydration when he gets heat exhaustion by not drinking anything for a few days and working out in the sun?  Oh, sorry, inserting my life there for a moment (it wasn't me, BTW).  This is the bones of a long-term relationship.  Those of us who manage it stay together.  Those who don't break up, simple as that.  Though he calls it something different, I like what Marty Tashman says about it: 

Once couples reach this stage they have already experienced some challenges (e.g. medical or money problems) and now other life decisions will have to be made (e.g. to have children, where to live, how to spend money). This stage is different from the Challenge Phase because a number of challenges have already occurred and the couple has learned how each other responds in these situations. The emotional patterns of each are clear and they have established patterns of dealing with their differences. It is common for problems to arise in this stage, but because you have already experienced a great many shared challenges, you stand the best chance of working through these issues.  

If you do, you stand the best chance of getting to the final (and best) stage.

6.  Unconditional Love--Unofficially, love gurus quote about 15% of couples as eventually getting to this phase.  It is the phase beyond the Life Balance where you are no longer doing something for your partner in the expectation that you will get something in return.  You are doing it because their welfare is as important to you as your own.  You know them, and understand them, and accept them with all their flaws as your life partner, (relatively) uncritically, and with total love.  Doesn't is sound great?  Isn't this the place you want to get when you commit to someone?  Isn't it important to see the light at the end of the tunnel of love?  I'll go back to Marty on this as well:

In this phase, couples learn how and when to compromise and they truly (not on the surface) accept areas of differences with minimum resentment. In this stage couples learn to re-appreciate and re-love each other and:

• Focus on what is right with each other;
• Give each other the benefit of the doubt in conflict situations;
• Successfully manage and truly accept frustrations, disappointments and hurts; 
• Agree to disagree and fully value each other even if they are totally unable to see things the same way;
• Have a give and take sexual relationship on a regular basis;
• Communicate in such a way they really listen to and hear each other;
• Can disagree with each other and be O.K with that;
• Recover from their disagreements within a short period of time;
• Constantly find things to appreciate about each other;
• Spend time relaxing and having fun on a weekly basis;
• Spend time talking about issues that come up in their relationship. 

Isn't this the place you want to live if you are in a long-term relationship?  What, truly, is the point otherwise? This, to quote the therapist Sean in Good Will Hunting, is the good stuff.  

How on earth did Ben Affleck and Matt Damon write that scene when they were single guys in their early 20's?  The answer is they didn't.  Much of this "Idiosyncrasies" scene was ad-libbed by Robin Williams.  

Have a love-ly night, Lisa

Monday, October 15, 2012

What's Important to Me

Today is the twenty-first anniversary of the day I became a foster parent.  At 2:24pm I was sitting in my kitchen, doing homework for grad school, waiting for my husband to pick our two kids up from day care on his way home from the CVS headquarters in Woonsocket, RI when a DCYF social worker from Providence (whose name I will not repeat because she was not a nice person) walked into my home with Dante.  For those who know my son, as you can imagine, my world has ever-since been immeasurably brighter.

My kids know the story--he walked in the house in his pajamas and Hulk Hogan slippers and went straight for the bread and cereal drawer, saying to me as he passed, "Hi Mom."  He was 20 months old.

Now I'm not going to post Dante's picture here because he deserves to be known as more than a poster boy for foster care.  He's a brilliant, strong, fearless young man whose tough start in this world is almost irrelevant.  The point is:  there are nearly countless numbers of kids still out there so alone in the world, and so self-sufficient, that they take the nearest person as an acceptable parent, and the nearest food as essential.  Even you!  Just fill your cabinets with carbohydrates and open the door and you will be good enough.  Just do it.  

I have tried these 21years to convince at least one other person to be a foster parent, to replace my husband and I when we stopped after reaching our limit with eight kids.  I am deeply ashamed (and I'm not kidding here) to say that I don't think I've done it yet.  So today, I try again.

I'll tell you what did it for me.  I was reading a TIME magazine article dated May 13, 1991 in my mother's bed while I tried to get a nap in on a Saturday.  The cover was on Crack Kids.  I thought, of course, oh how sad but I'm a nerd so what I was really interested in was what they were saying about the brain effects.  I worked at the Child Study Center at Brown and there was an infant study run by Barry Lester, Ph.D. and Cynthia Garcia-Coll, Ph.D. on babies prenatally exposed to cocaine at Women & Infants Hospital in Providence.  For their study I had learned to do newborn exams for the neurological conditions often found in babies exposed to crack, called the Brazelton Neonatal Behavioral Assessment Scale (NBAS).  Their initial findings were that the effects weren't necessarily long-term, they thought, maybe just ADHD but not cognitive impairment like prenatal alcohol and heroin.  So I dove into TIME to see how sensationalized the article would be.

And I immediately forgot the stupid brain stuff--as I read it I thought (like most of you would from the start) oh these poor kids.  And there was an article in there about supporting Moms and getting them into treatment and how that's the best course for the kids but some of the Moms won't cooperate with treatment so the kids have to go into foster care where their lives become sometimes even more difficult and I thought:  why should a baby go from the frying pan into the fire?  Christ, why shouldn't, how can I possibly not do foster care while these addicted mothers got their collective acts together?

Well, I can tell you some reasons why, and I wonder if my being so open with the difficulties of being a foster parent has in fact discouraged the few people I may have been able to convince.  But what else can you do? Like any kind of parenting, it ain't easy, though it's not that much harder than regular parenting either.  It's just different, and it's very, very good.  Since that night, when I convinced my poor husband to go to 12 weeks of training on how to be a good father (trust me, this was superfluous) so we could be licensed foster parents, it's been a wild but mostly wonderful ride.  For you, it could be too.

The key, I have found, is having the right agency train, pay and support you.  I have loved the work the Annie E. Casey foundation through Casey Family Services, but they recently announced they are closing their foster and adoption training facilities next year.  In my area, I like the IPP Professional Parent Program and  Boys and Girls Village but there are other agencies too--DARE and CRI and the Children's Center--just call one, or scan their website, or go to an orientation.  The pay can be good, the income is tax-free, the work often little more than you're already doing to run a house, the love you get back immeasurably awesome.

Last week was my granddaughter Ava's third birthday.  She's just as much a sunshine presence as Dante was at that age, or her mother Sheyanne.  And I never would have met her, in fact she wouldn't exist if I hadn't made the call.  So, happy anniversary to me.

With Love, Lisa