The Zipper Girls (besties and participants in the annual Girls Adventure Weekend) introduced me to Ruzzle on our last trip. Ruzzle is a word-search app for all your i-technology. I can
waste spend literally hours playing against myself, the Zipper Girls, and complete strangers. Whenever Stan hears the Ruzzle ten second count-down (each game is timed), he says, “Again? Really?” But when the term “addiction” gets tossed around, I just put on my smug face and say, “Researchers have shown that elderly adults who engage in mentally stimulating activities are less likely to develop dementia.” Is there even such a thing as RA? (Hello, my name is Trophydaughter, and I’m a Ruzzleaddict.) Yep, classifying my Ruzzle time as mental exercise let’s me engage guilt-free.
Seriously, I worry about dementia. That is, when I’m not worrying about the economy, the puffy circles under my eyes, the devaluation of the dollar, how fat I actually look, whether or not I need to own gold, the overall health of our nation, my job, my husband’s job, how outdated my house is, my sister’s health, the deer eating my yard, our healthcare system, and the ultimate fate of social security. When my grandmother died, she didn’t know who I was. The last time I visited her at the retirement community, she said, “Why are you here? Will you please stop following me?” My dad has also had some inexplicable cognitive episodes. Once he was angry with Mom for a week for stealing $20 from his top dresser drawer. Mom said he’d never even kept money in his dresser drawer.
I’ve also noticed some inexplicable cognitive issues with my sister since re-entry into her life. She can’t keep up with her stuff. She is constantly “losing” things, leaving stuff in my car, misplacing her apartment keys. She struggles with memory (as do I) but she will tell me something one day and when I bring it up again, say, “I don’t know why I told you that. That never really happened.” She will chalk a mistake up to a “life lesson” and then repeat the same mistake in a month or two as if she’s completely forgotten what happened the last time. Recently, she allowed a new friend to spend the night at her apartment and woke up to find the friend gone along with her new Nexxus tablet (which she’d saved for for months). Previously, when she’s allowed friends to stay over, they’ve stolen medication, clothing, and food from her. So why does she keep doing it? She will call me 3 or 4 times a day to tell me something because “If I don’t tell you right this minute, I won’t remember it later.” I do this too at times but I’m juggling a LOT of stuff. Which is not the case for Jerri.
She complains about her ability to concentrate. While I tend to tuck these comments away in the “How can I convince Terri I really do need Adderall?” file, I know Jerri truly believes her ability to focus has diminished significantly. She also took an online Autism test recently and scored in the “moderate” range. I’ve observed her awkwardness in many social situations – she doesn’t always pick up on visual cues and she goes down inappropriate conversation paths at times.
It has been challenging to discern what is illness vs. cognitive impairment from medication vs. this mysterious, unnamed “something else.” Just yesterday Jerri said to me, “I’ll never be the person I was before. There’s been too much brain damage.” I refuse to accept this.
The brain is an amazing organ and has the natural ability to repair itself which is called neuroplasticity. Neurons, or nerve cells, are the basic building blocks of the central nervous system which includes the brain. The connections between nerve cells, called synapses, allow information, in the form of nerve impulses, to travel from one neuron to the next. The human brain is made up of trillions of synapses. Its this network that allows us to feel, behave, and think. The more connections in your brain, the greater your cognitive function. When connections are broken, it impacts cognitive ability. Connections that are used regularly become stronger. Connections that aren’t used eventually get eliminated through a natural “pruning” process. “Use it or lose it” is actually a fact when it comes to connections in your brain. Drug use and excessive alcohol consumption can cause connections to deteriorate or break as can exposure to some heavy metals and pesticides, and brain trauma. But because of neuroplasticity, broken connections can sometimes be restored.
Given all this, I was enthralled by an article about CET, Cognitive Enhancement Therapy (Improving Cognition in Schizophrenia) in the Spring edition of the NAMI advocate. Per the article:
Many individuals with schizophrenia and related disorders exhibit signs of impaired cognition: they have problems paying attention, remembering, solving problems, and making decisions. Brain-imaging studies have revealed that individuals with schizophrenia show reduced activity in the prefrontal cortex, precisely the area of the brain involved in attention, working memory, and judgement.
Wow, this sounded like Jerri so my first question, since she doesn’t have a diagnosis of schizophrenia, was what are “related disorders”? Turns out that a study funded by the National Institute of Mental Health (NIMH) was just published on February 28, 2013 (Lancet, Identification of Risk Loci with Shared Effects on Five Major Disorders: A Genome-wide Analysis) that identifies specific gene associations between schizophrenia, bipolar disorder, ADHD, depression, and autism. This so fits what I’ve observed in my own immediate family where besides Jerri’s bipolar disorder, others have been diagnosed with depression, ADHD, and mild forms of autism.
But back to CET. CET involves structured activities that exercise the brain and mind. CET Cleveland is the first CET program to be established outside of academia and is currently only available at 21 sites in 10 states, however, new sites are in development in other states and YAY!!!, North Carolina is one of them. (Still trying to track down the location of the site and when the program will be up and running.) The program requires one 3.5 hr session per week for 48 weeks. Each session involves 3 components: computer-based exercises, group-based interactions, and one-on-one coaching sessions. Complete brochure in PDF format is available here. Participants are able to improve overall cognitive functioning by strengthening and developing new neural connections. Through group-based interactions and coaching, they are able to increase their understanding of how society and the workplace function. Most graduates of the program continue to improve and go on to enroll in school, work, or volunteer. To me, CET is a missing link for my sister in her recovery. This is definitely another opportunity Jerri and I will be keeping our eyes on as CET becomes more widely available. Learn more about it at cetcleveland.org.
I’ve just come off a week of mandatory training on epilepsy and anti-epileptic drugs, many of which are also used to treat mental illnesses. Some time around the end of training day 3, as I was slogging through prescribing information (PI) for 4 different products, it occurred to me that we take pharmaceuticals far too lightly here in the US.
I’m speaking as a consumer and sister of someone who takes some serious psych meds and not as an employee of a pharmaceutical manufacturer. This is strictly my own opinion and does not necessarily reflect the perspective of my employer.
There is an odd cultural phenomenon in our country that, based on my international travels, appears peculiar to the US. We expect and, to a great extent, trust the government and big business to keep us safe. If they fail to do so, we file a lawsuit. And we often win with outrageous settlements giving the government and big business further incentive to continue trying to protect us from our own stupid decisions. Our confidence in prescription medicine goes hand-in-hand. We tend to believe a product is “safe” if the FDA (Food and Drug Administration) approved it. Am I right? While it is true that the FDA requires two randomized clinical trials demonstrating safety and efficacy for a medication to be approved, that does NOT mean, by any stretch of the imagination, that the medication is without risk. FDA approval basically means the benefits of the product outweigh the risks for the population in which the medication was tested and for whom it is indicated. In pharmaceutical math, that doesn’t necessarily equal “safe”.
If you read the PI for any given medication, you’ll find a contraindication section which specifically lists conditions in which the use of the medication is decidedly not “safe”. There is also a “Warnings and Precautions” section that outlines specific usages, with concomitant medications or in patients with specific illnesses or conditions, in which healthcare providers should exercise extreme caution when prescribing.
If you aren’t familiar with PIs, I’m not surprised. All medications in the US have one; the FDA requires it. It’s that multipage document in teeniny print to which origami is applied to reduce it to the smallest folded size possible. You are supposed to receive a copy of the PI with every medication you fill, but some pharmacies may or may not provide it based on your medication’s packaging. For example, if your medication comes in the standard orange vial with white screw-top, you likely won’t get a copy of the full PI but you may get some excerpts stapled to the bag.
You can find a copy of the full PI online for many medications. If the medication is relatively new (< 10 years) and is currently being promoted (via commercials, media ads, sales representatives), there is likely a manufacturer website named http://www.[insert drugname].com where you can usually locate a PDF of the PI (sometimes as a link at the very bottom of the homepage in small print or sometimes under a tab for professionals). If there is no brand website, DailyMeds, an NIH (National Institutes on Health) site, has PIs online for over 35,000 drugs.
If you have a family member taking psych meds, I highly recommend you read the PIs for all their medications. It’s written for healthcare professionals and can be daunting to understand–do it anyway. In recent years, the medication guide (often found at the end of the PI) is an attempt to translate the information in the PI for the average consumer.
Here’s why you need to read it. In addition to the peculiar faith we Americans place in The Establishment, we place a similar faith in the medical profession. We tend to believe all health care professionals are intimately familiar with every medication. Ridiculous, if you think about the sheer number of drugs actually on the market. But also scary. Particularly when dealing with medications that target the brain.Your family member with mental illness could be taking a drug that should never have been prescribed for them given other co-existing medical conditions or other medications they are taking.
Take, for example, the medication-of-which-we-do-not-speak. If you’ve read my older posts, you know I’m referring to ADHD medications, specifically Adderall at the moment, a widely-abused amphetamine. While this medicine may be arguably safe and effective for children with ADHD, no one with Jerri’s history should be prescribed Adderall. Here’s what the PI says:
So you can see why I’m so against Jerri taking the drug. For her, the benefits do not outweigh the risks. For her, it is not safe. Her prescribing physician (who is not her psychiatrist) should know better as I’ve made sure he is aware of Jerri’s medical and psychological history. I’ve repeatedly expressed my concerns but he continues to prescribe it. Perhaps he thinks it will do no harm. Ha! He needs to read the PI. It should not come as a surprise to any of us if that medication eventually kills her.
Jerri is just as adamant about taking Adderall as I am opposed to it. Can you say “psychological dependence”? So it has become the-medication-of-which-we-do-not-speak. It’s very difficult knowing my sister is basically playing Russian Roulette and I’m unable to get her to put down the gun. I feel for those of you in similar circumstances.
The moral of this story is know your meds. If you have a family member with mental illness, know their meds. Don’t take their medications lightly. Read the PI or medication guide. Talk to a pharmacist if there is any information you don’t understand. Speak up if you have concerns. You have a voice–use it. You may not be able to change either the prescribing behavior of the doctor or the drug-seeking behavior of your loved one but at least you’ll be better informed should a drug-related crisis occur.