Here are the three lead paragraphs in the 11/19/07 issue of The Oregonian,” Oregon’s statewide daily newspaper:
“Americans live in an era of 15-minute doctor’s appointments, and those minutes tick by quickly for patients who juggle myriad illnesses, medication schedules and diet restrictions.
So if you’re Jean Swank, in excruciating pain from diabetic neuropathy, unable to sleep and concerned about your asthma, which does your doctor hear about first? And what happens when you leave the doctor’s office and have no one to talk to about your health?
You could sign up for a six-week class at Oregon Health & Science University called “Living Well,” as Swank did. The program allows those who live each day in pain or discomfort to gather, talk freely about their chronic medical conditions and share tips for managing them — and research shows the classes reduce hospital trips and improve overall health.”
The headline for the article is “Chronic care helped by sense of community.”
Upon reading it the thought in my mind was: The gates open and the horses are out of the corral.”
Huh? I don’t get it, you say.
Well, what I’m dealing with is not pain and discomfort, but a massive dose of a malady called frustration. I’m frustrated with the fact that for some number of years (I’ll tie the number down more specifically after talking with Tom) the three of us have been shadow-boxing with what we now know to be Binswanger’s Disease. During those years, had we known what was happening, we could have–perhaps–taken some corrective steps and participated in some meaningful education programs and skills-development programs; communitized; felt the warmth of some ‘sense of community.’
Now the horses are out of the corral, however. Biff: The diagnosis. Bam: Best of luck to you all.
Maybe I’m processing everything with a little too much cynicism, but I don’t think so. Somewhere, deep down inside, lurks this suspicion that we should have had a diagnosis some years ago; that there was sufficient diagnostic data being generated all along that the medical professionals could have analyzed and interpreted in order to give the patient’s family some “meat” to digest; some actionable information and intelligence. Something other than what we actually received, which was a dependable pattern of prescription management that produced a series of ups and downs; over-medicated; under-medicated.
Oh well, “Americans live in an era of 15-minute doctor’s appointments.”
Yet, there was one physician, about three years ago, who said: “Lee, you’ve got to rewire your brain.”
In retrospect, now that the horses are out of the corral, that directive nails it perfectly! Unfortunately, that recommendation was compartmentalized inside of a 15-minute office visit, and its significance self-extinguished. Almost.
Over the ensuing years, Tom and I talked around the subject of Lee rewiring her brain. It was often the final period to those conversations about her and something she would be doing that was worrying or troublesome.
“If she would only rewire her brain.”
Summation. Then we change subjects and go on to something else. Something more positive.
Tom even talked with her one-to-one about the idea, discussions that didn’t go well for either of them. Imagine yourself being told to clean up your act when you absolutely think your act is in order, and perfect.
The flickering of interest in brain rewiring, albeit at a minimal level, did lead to periodical Internet research on my part, and the purchase and reading of several books on Tom’s part.
Those research efforts led me to write an email to the physician heading the Cognitive Assessment Clinic where she was undergoing her most recent evaluation (duplicative of one early in the year at another assessment clinic), the following:
Anticipating our next appointment on November 15th, I am asking that you answer the following three questions for us ahead of time:
1. Is cognitive therapy, something reflecting the research of Aaron T. Beck, MD in my mom’s future?
2. Is neuroplasticity, something reflecting the research of Norman Doidge, MD in my mom’s future, or are we just dreaming?
3. You suggested we bring “any other supporters” to our November 15th appointment. Can you share with me a sentence or three elaborating on what you had in mind behind that recommendation?
Cognitive therapy and neuroplasticity are brain rewiring strategies.
Here is the answer I received the day before the diagnosis:
Hi Mike, cognitive therapy and staying active to enable plasticity to recover any possible function is always a good idea…I know of no formal therapists here in Portland though do you?
Armed with this information we have our appointment with the good doctor the next day and hear the diagnosis, finally. And we hear the prognosis, which is, while reality, disheartening. And Tom gets a business card referring him to a geriatric psychologist where he can get some help with learning coping skills. The patient gets the usual prescription modification.
Let me be perfectly clear about one thing: I have the utmost respect for this last physician simply for the fact that he dared to diagnose. I can’t say that for several previous doctors who had the same diagnostic information in front of them.
Now it’s a matter of putting together a plan of action for Tom and Lee. Fortunately Tom, at 87, is lucid as water in a crystal spring, but emotionally and physically draining. He loves his wife and has that rare “until death do us part” commitment motivating him through the trials and tribulations.
The immediate next step is to get him locked in with the geriatric psychologist, which may present some hurdles because she is an independent practitioner, and Tom’s medical coverage is with Kaiser Permanente. Kaiser doesn’t have any geriatric specialists in its mental health services division, so they would have to approve payment for Tom going to an “out of network provider.”
I talked with Kaiser yesterday (how do you think I learned the jargon?) and will be talking with Tom’s primary care physician sometime today.
I hope they grant the approval.
If they won’t I’ll have to put my warrior clothes on and do battle.