Email to Dr. Norman Doidge
He asked me to drop him a line and this is what I wrote:
Thanks much for stopping by my blog and commenting:
Your book has had a huge positive impact on my life. I am thrilled to be in touch with you.
Brainrot is my “affectionate” name for the epilepsy/pain condition which has disabled me periodically for 15 of my 57 years.
When brainrot first hit me I was 25 (1977). Then it was primarily an epilepsy condition centered in the left temporal lobe, but with a minor pain component. I’ve never had grand mal seizures; my epilepsy has been given a few different labels, including psychosomatic. Phenobarbital stabilized my first bout of brainrot and I was able to work as an elementary school teacher and then enter the computer game industry and write 2 hit games.
In 1988 brainrot knocked me out of commission again for 3 ½ years. Years spent searching for the right seizure med. The pain component was greater during this bout, usually before or during seizures. I was even evaluated for brain surgery in 91 just when my brain was stabilizing again. In 92 I dove back into computer games and in 93 got hired by Microsoft Research to code and manage in the Virtual Worlds Group.
After five fun, intense years at MSFT, in 97 brainrot struck again hard and I have been struggling with it for the past dozen years. From 98-2003 my seizures were out of control and the pain accompanying them became almost unbearable. The pain became horrid all the time, although seizures drove it through the roof. A wonderful neuropsychiatrist in Seattle, Dr. Vernon Neppe, worked with me for years to find the right meds to stabilize my seizures, which turned out to be Lamictal and Keppra. Dr. Neppe diagnosed me with Thalamic/Central Pain Syndrome. He thought that my seizures had damaged my thalamus so that most incoming nerve signals were labeled as pain.
My feet and lower legs were always at some level of pain – classic neuropathic symptoms. As my pain level gets higher I get flashes of pain down my left arm and then right arm. At its height my pain feels like a geyser of agony erupting through my skull – completely incapacitating.
I moved to my cabin in the Wisconsin woods in 2004 and living in this quiet, wild place has been tremendously healing. The general trend of my health has been upward, with a huge reduction in pain in the fall of 2005 which allowed me to do some programming and writing again. But my pain was constant and was amplified by activities such as intense conversations, doing even moderately complex operations involving lists and time, and listening to some rhythmic sounds.
Every few years I have searched out a new pain doctor for evaluation and treatment. Two years ago I went through a battery of tests at Marshfield Clinic and the U of Mn but the only relief they could offer was heavy painkillers that I didn’t want to take. Last summer I started seeing a counselor who recommended local pain specialist Dr. John Brendel.
I bought your book last fall after reading a great review in New Scientist. I am writing a sci-fi novel, Hel’s Bet ( http://helsbet.com ), that stars a woman who is into brain self-hackery, and The Brain that Changes Itself seemed like perfect fodder. As I read your book I thought about my own brain but couldn’t come up with any way of applying neuroplastic intervention to my brainrot.
On my first visit to Dr. Brendel he heard my history and said that he’d like to try something new. Was I familiar with the term neuroplasticity? I told him I’d read a book called The Brain that Changes Itself and Dr. Brendel was excited because he had just heard you talk at a pain conference. He told me that most of his patients just wanted pills to make the pain disappear.
His first suggested exercise was to find a smell that was comforting. I immediately knew my comfort smell was the scent of balsam fir needles. I was to smell that smell whenever my pain was at its peak. He encouraged me to experiment, to feel what actually worked and go with it.
I got no relief from the balsam pillow – it was soothing but the pain was still as pitiless as ever. I decided to try multisensory pleasure and started what I called my Sunset Healing practice (https://dougsharp.wordpress.com/2009/04/07/troubleshooting-my-brain/ ). I live in a cabin facing west on a lake and sunsets are wonderful. I took 20 minutes every sunset to pamper every sense – smell: the balsam pillow, hearing: a CD of soothing harp music, taste: fresh fruit, sight: a beautiful sunset, and touch: the feel of my two dogs’ fur as I petted them.
I quickly discovered that only the sense of touch offered relief, so I concentrated on petting my dogs (which they love!) I petted them with my feet and it was immensely soothing, but the pain level overall didn’t budge.
I started to try different ways of petting the dogs with my feet and suddenly started to feel startling flickers of complete cessation of pain. I zeroed in on what I was doing when I felt those painfree flickers and quickly discovered that it didn’t matter whether my feet were feeling pleasurable sensations, it only mattered that they were feeling new sensations and that I was paying close attention to those sensations.
As I experimented, again and again I felt my pain flicker completely away. It wasn’t a gradual reduction of pain slowly dipping from 5 (on the subjective 0-10 pain scale) down through all the levels to 0 – it was an immediate flicker from a 5 to 0 to 5 again. I concentrated on refining my exercises, guided by the pain-free flicker.
What I discovered is that I needed to practice tasks that makes me concentrate on new sensations in my feet . The sensations didn’t have to be pleasant or soothing; they just had to be new. This made a lot of sense to me under the neuroplastic model. I could visualize new pathways being established and strengthened, routing around the damaged pathways in my thalamus.
The np model gives me a clear picture of what I’m doing when I “play footsy”: I am practicing feeling the real world.
So every day I do one or two ten-minute sessions with a box of objects that I manipulate with my feet – coins, marbles, a box of cards, string, paper, pens. I am training my feet to pick things up and manipulate them. In my quickest sessions I just dump the box and pick up every object with my toes and put them back in the box. In longer sessions I’ll put playing cards back in their box with my toes, write some words, balance things on the back of my foot, try to discover a pattern in the texture of the carpet.
Within a few weeks of starting these exercises my pain was entirely under control when I rested. I found that when I feel pain I don’t need a full 10-minute footsy session – I can feel around with my toes inside my shoe or take my shoes off and do a simple tactile task – following a seam with a toe, finding a toenail that needs cutting. I sometimes leave coins in my shoes to give my toes something to play with.
The neuroplastic model has also given me a new attitude toward my pain. I am so used to pain that it’s easy for me to ignore pain of level 3 or lower. When I’m in a little pain now I know that by ignoring it I am strengthening the painful, damaged neural pathways. That motivates me to do np exercises.
I had hoped for some reduction in my pain and was astounded that I often feel completely pain-free. I had given up hope of ever feeling relaxed and at ease in my body.
The transformation of my life has been profound. I can enjoy being around people (I am naturally sociable but my brainrot makes interaction painful). I enjoy exercise and take walks now to relax – 4 months ago I walked every day but was always exhausted and needed hours to recover. I am much more in touch with the world through all my senses because I don’t have to clench myself against constant pain.
As someone who loves science I know that I may be fooling myself about what’s going on. It’s hard to do a valid experiment with N=1. But I do have hope that my experience might point the way for effective neuroplastic pain management for people suffering from Central Pain Syndrome. The fact that mine was caused by seizures rather than a lesion might mean that only borderline cases could benefit.
I still have significant cognitive and pain challenges (https://dougsharp.wordpress.com/2009/06/05/next-challenges/ ) but I am certain that I will be able to find or create neuroplastic exercises to recover what I lost. One of the greatest things about the neuroplastic model is that I now feel responsible for my recovery. I am no longer waiting for a neurologist to find the right mix of meds to fix me. I developed my np pain exercises and I know I can develop exercises to rebuild my lost ability to deal with complexity.
Of course I would love to work with the best neuroplastic specialists to rebuild my lost cognitive skills. When I saw your comment on my blog I immediately thought – wow! I bet he can hook me up with the best people to work with. Any referrals would be wonderful.
Thanks again for your great book and your passion for spreading the word about our brains’ potential for change.
I’ll report back here when he replies.