NOTE: IN ORDER TO BETTER SEE PHOTOS IN THEIR FULL 1600 PX. RESOLUTION, VIEW THEM IN THE ALBUM FORMAT BY CLICKING ON THE LEAD PHOTO OR ANY PHOTO IN THE POST. This is especially true for landscape shots. Thanks to Mark for the idea of adding this alert so the photos can be seen at their best!

Saturday, March 5, 2016

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.



7 comments:

  1. Very courageous post Pam. You're right, you never know what other people are going through. I wish there was something I could say, but l will keep you and Cory in my thoughts.

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  2. I'm sorry to hear Cory's story, inasmuch as he isn't where he wants to be. I fervently hope that your theory is correct -- that his bipolar hasn't been properly addressed. A friend has bipolar, with the tremendous highs and deep, deep lows, and her medication has had to be switched quite a few times. She's in her 60's now and doing well, has, in fact, been doing all right for quite some time. She really had to keep at it. Her bipolar doesn't sound exactly like Cory's, but it was debilitating to her nevertheless. Best of luck to you as a family and to your young son in particular.

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  3. I can't imagine dealing with what was "laid" in your family's lap. This post is an eye opener and you and Cory are courageous and thoughtful to share it. I know it will bring a measure of "we're not in this alone" to others who struggle with bi polar issues, or Mental Illness of any kind. There are many success stories, I sincerely hope Cory is one of them, and soon. Thank you for sharing this.
    With respect and admiration for Cory, and the determination you all have to see this through,
    Box Canyon Mark

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  4. Cory is fortunate to have parents that are there for him in his unfortunate situation. It is tough for everyone involved. Keep sharing your journey.

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  5. Since you first posted of Cory's struggles, I've often wondered how he was doing. I'm sorry to hear that it is still such a challenge. My hat is off to you both for your continued resilience.

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  6. I agree with both Mark and Judy that you are both courageous in your fight to get the treatment he needs and to share the story. I hope someone who has a similar situation will read this and offer some possibilities or be strengthened in their struggle by your honesty. Could Mayo in Minnesota be of help or have you been there. Mental Illness is the part of our health care least understood and supported. We all must advocate for changes and better services for Cory and others like him.

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  7. You have my sympathies over this, I have not had any dealings with Bipolar Illness but depression I have (not me) and the wrong drugs can make you suicidal. I hope you all come through this

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