Returning to Shepherdsville, Kentucky - Thoughts on Bipolar Illness

I try to keep it light on the Nomadic Newfies, but sometimes serious things happen and sometimes they need to be talked about.  I've mentioned my son's battle with Type 2 Bipolar disease a few times, and tonight I sit here in a camping cabin at the same KOA in Shepherdsville where he and I traveled 3 years ago when the seriousness of his illness had just started to show itself.  I've been meaning to bring his struggle up again and maybe now is the time to discuss what has happened since it all began at some greater length.

Revisiting the rock shelter at Shepherdsville KOA without Cory

When Cory and I were here 3 years ago we thought we were dealing with depression, and after just a few months of treatment with anti-depressants it wasn't going well.  We took a trip to Kentucky as a distraction for him, but cut it short when he took a sudden downturn and things were so bad that Cory spent most of the ride curled up on the floor of the car.  What I didn't know then was that he also suffers from auditory and sometimes visual hallucinations and of course none of that was being treated at the time so who knows what kind of hell that 7 hour ride home was for him.  Needless to say every time I've considered coming back down to this part of Kentucky again I've shied away from revisiting the memories but I finally feel ready to make my peace with them and make some better ones.

Cory at the nearby Bernheim Arboretum, February 2013.
 Insomnia and lack of appetite were depression and anxiety symptoms that contributed to Cory being underweight for years.

After 6 months of treatment with anti-depressants Cory was still not improving and was finally talked into admitting himself into a facility where they immediately diagnosed him as Bipolar 2 (mostly depressive in nature and his mania more closely resembles an energetic "normal" state) and we were on our way to a tour through the complicated world of Bipolar and the mental illness treatment system.

"Sea Heroes" a Louisville Gallopalooza entrant I saw today - locate more here

Medication adjustment is still ongoing over 2 years later, and while his bipolar shifts have lessened in frequency and severity they still occur often enough that I think he can be characterized as "rapid cycling" which means it really kind of never ends for him.  The depression is still there almost constantly interspersed with a few occasional "good" days where his mood will improve and he will start projects and make plans to do things but a few days or a week later he will crash again.   Negative self-image due to the internal negative dialogue is a problem (hallucination related), but the suicidal thoughts are infrequent and the good news is he no longer wants to act on them.  As I mentioned, we discovered that auditory hallucinations were a problem, mostly limited to "jibber jabber", radio static, indistinguishable faraway voices and other noises, but sometimes there is a nagging voice in his head that never has anything nice to say.  Adding an anti-psychotic to his treatment reduced these unsettling symptoms but has had the unwanted side of effects of weight gain, borderline high cholesterol and we think may be the cause of excessive sleeping.  A recent increase in the dosage to attempt to quieten things down more was not successful so perhaps the medication isn't the right one but we are only on the right track.

One of the current symptoms that we just can't seem to make any headway with is sleep related.  When this all began the problem was insomnia, but after adding the anti-psychotic our new challenge is over-sleeping coupled with unpredictable sleep patterns.  This makes it difficult for Cory to even consider working at this time as he cannot predict when he will be alert and he is difficult to waken. Part of the unpredictable sleep pattern comes about when his visual hallucinations get triggered, making him want to be constantly busy and distracted and avoid "quiet moments" when the hallucinations are most likely to occur.  This distresses him quite a bit as he doesn't feel like he is "better" since he cannot seem to get into any kind of rhythm and wants to be financially independent.  It's also come to light that he is struggling with memory and concentration which is an additional factor since it contributes to making it difficult to ensure that he gets his medication so he doesn't have any relapses.

Cory's personal brand of self-help - cats for the anxiety, headphones to counteract the auditory hallucinations

The other symptom that is really making his life difficult is one he has dealt with his entire life and that is anxiety.  It was the reason we began homeschooling him at age 8 and something we have developed ways to cope with, but it has gotten worse and his current psychiatrist does not seem to be up to the task of doing anything about it so we are finally moving on to hopefully greener therapeutic pastures.  Finding good doctors is always hard no matter what your affliction, but the lack of resources for those suffering from mental illness in our area is really daunting.  When Cory was hospitalized the first time it took 2 months to get him in to see the only doctor within a 30 mile radius who would take on a new patient at that time!  We are branching out and are willing to travel to the Milwaukee area to try to get him on the right track.  It feels like some piece of the puzzle is still missing and without it Cory is just "hanging on" but still not well and still not able to function like he wants to.  Here's something from Cory's Facebook that he thinks helps illustrate his dilemma:

A bit overwhelmed?  We are too! Bipolar can be managed, but only with persistence and patience.  Cory is eager to get more out of life and have career or education goals again, but we are still focused on getting him to the place where he can reliably take his medication and until we have some of the more disabling symptoms under control the reality is that he is just not there yet.  Cory's particular "slice of bipolar" is either more complicated than most, is incredibly resistant to treatment, or has just not been properly addressed yet.  We're not giving up, and part of not giving up is sharing our story in hopes that it helps other people understand those who are going through something similar or better yet helps someone else who is undiagnosed.  Cory is a believer in sharing his story, so pass this on and share if you think it will help someone.

Kentucky's typical muddy spring

On a more personal note, living with someone with mental illness has changed the way I view the world and how I interact in it.  For example, while I don't condone giving money to panhandlers I was approached in a parking lot in Louisville today by a young man asking for "help getting food".  Of course I had food in my car but being a woman alone was not about to escort a stranger to my car.  Feeling uncomfortable about turning him away a few minutes later I was out of the store with my item purchased and kept my eyes open for him in the parking area.  Sure enough he was talking to a couple of women nearby.  I drove over and handed him a banana and a granola bar, hopefully also making a point to the women handing him money.  What does all this have to with mental illness?  Sure, the likely explanation for his story is he wants money for drugs instead of food.  What if he has a drug problem because he is trying to self medicate a mental illness?  What if he is living on the street due to an unmanaged mental illness?  Even if he is looking for drug money, it is highly likely he is also hungry, right?

We don't know what other people may be struggling with and perhaps someone looking him in the eye and handing him some food is a step toward him feeling better about his ability to get some help.  A minute later when I passed him he was eating the banana and I smiled and waved as I drove away.

Welcome to Cory's World

I'm finally ready to broach a topic that I've wanted to discuss for awhile now.  Our son Cory suffers from Bipolar disorder type 2  coupled with dysthymic disorder.  Most people are familiar with the symptoms of bipolar type 1 as that is what is the most common and is often portrayed in the media.  In Type 2 the "up" moods never reach full on mania and their depressive moods are usually more severe.  In bipolar 1 or 2, the dramatic mood episodes can last days, months and sometimes even years. Dysthymic disorder is characterized by a long-term, low-grade depression for two or more years which is not due to disease or substance abuse. For the past year Cory's "up" moods have been infrequent at best, and his depression has gone from low-grade has to severe and at times life threatening.

Cory 2010

We worked with a therapist and our family doctor for six months before things got so bad that a short hospitalization was necessary.  It was a difficult decision to come to, but Cory's life was at stake and dramatic intervention was needed to get him on the right medications and help him learn some skills needed for managing his illness.  I haven't talked about what we've been going through as a family because it's not easy to describe the disorder, much less the daily level of worry that we've been experiencing. Cory has no opposition to discussing his problems with everybody which is why I'm finally broaching the topic here.  My main goal in doing so is to help shine a light on this disorder and maybe help others in a similar situation.

Doctors don't fully understand Bipolar disorders yet, but think it is based on a genetic disposition to having difficulty maintaining proper levels of brain chemicals.  They also think a stressful event can set off the imbalance of mood regulating chemistry.  Even back as far as infancy Cory experienced life with extreme mood reactions, notably anxiety, so looking back it's easy to see that he was susceptible to a mood disorder.  In grade school we had trouble with bullying and started seeing signs of extreme anxiety which is why we pulled the kids out of school and started homeschooling.  Cory now informs me that it was at this time that he started thinking negatively about himself often, had trouble sleeping at night, and contemplated hurting himself.  As is the case with any person's thoughts, he didn't tell us the extent of what he was thinking (I never knew he was lying in bed not sleeping at night at the age of 8!) and we didn't think to ask.  We knew he was under considerable stress and anxiety but not that he was suffering symptoms of depression.

1997

Once we began homeschooling it took two years for me to feel like Cory had mostly gotten back to his pre-bullying "norm", though I knew his self-image and confidence had been permanently damaged to some extent I didn't know how deep it really went.  He seemed mostly okay until he was about 17, and then when he seemed irritable and had weird sleeping habits we asked him if everything was okay because depression does run in our family.  He said he didn't need to see a therapist and we all just assumed it was that "teenager thing", but to Cory it was just an extension of the way he had always felt inside and didn't know wasn't the way everyone felt.  After he completed his high school studies he tried going to classes at a local technical college but had difficulty being motivated and with concentration. He'd done well at the few courses he'd taken there previously so we didn't know what to think when he failed more than he passed and chalked it up to "school burnout".  We discussed this very topic just the other day and I reassured him that now we know it was the depression and not his fault and that it's up to him whether he attempts school again when he feels ready.

Homeschool days - successful crayfish hunt

A little more than a year ago he dropped into a severe depression and suicidal thinking.  It was at that point that we discovered how serious things were and started on the road to recovery.  Recovery with this disorder is no easy thing, and progress is very slow since once in an "episode" it is hard to get the mood stable again and small emotional upsets can further disrupt any attempt at stabilization.  It was probably six months before Cory was seeing any discernible amount of relief and then only after his hospitalization and medication changes, and he is still grappling with not blaming himself or his personality instead of his illness.  For the past few months while things are still not where they need to be, we have seen improvement and his mood, while still depressed, doesn't drop as dramatically or as frequently, and he doesn't seem to be in imminent danger of harming himself.

Medication is the key component in a bipolar treatment program, but he also sees a therapist once a week for talk therapy in order to help motivate him to stick with his treatment and deal with the stressful effects his severely depressed mood has on his work and personal relationships.  Attention to a routine of regular sleep, eating habits and exercise can help maintain good mood and this is an area we are still working hard at.  Cory suffers from a disinterest in food and is seldom hungry so has to make an effort to eat regularly.  Regular sleep is also something that is still eluding him and at its worst he sleeps in one or two hour intervals spread throughout the day or stays up all night agitated and unable to fall asleep.

We finally got a breakthrough on the day we were leaving for Reno.  He had an appointment with his psychiatrist and after mentioning his continuing negative thought pattern, nightmares and insomnia she prescribed him a new medication.  He took it our first night in Reno and slept for 9 hours!  Every night since he has slept 7-9 hours with normal momentary awakenings.  In addition, his internal mindset improved almost overnight.  The incident where he fell into the water is a good example.  He got his camera wet and normally a situation like that would have ruined his good mood for a week, but he was shocked when he laughed about it and took it in stride.  He's still talking about how he can't believe the difference in the way he reacted to that situation.  On the day we left Reno he woke in a bad mood due to a nightmare, but when we went to breakfast there was a man playing keyboard at the restaurant and by the time we left he was in a good mood again.  Sounds like such a simple thing, but to Cory the ability to shake a bad mood hasn't happened in over a year!  We're all feeling very hopeful right now that he's finally found the right combination of medications to give him his life back.

boulder hopping

As bad as things have been for Cory, he is luckier than most in his situation.  He has a supportive, understanding family who has helped him get and maintain treatment.  Due to the education and emotional support he's gotten at home he doesn't abuse drugs or alcohol as many other bipolar and depression sufferers do in an effort to cope.  He is very articulate which helps his doctors understand as well as treat his symptoms, and he is able to apply rational thought to his behavior sometimes even when his brain is urging otherwise.

I hope my talking about this has helped some people understand this illness a little better.  I know it's been hard for us to fully understand how difficult bipolar is to treat.  It's a lifelong battle, but we know there's a Cory in there waiting to enjoy life and we're willing to work hard to help him get there.

Want to know more?  Psychology Today has a good article on the differences between Bipolar I and Bipolar II here.