I was in a coma for three months. This blog is dedicated to other people who have experienced coma and is also helping with my recovery, my memory. I have written about my life in the hope it can help others. Indeed now through the Internet we can communicate globally with anyone about anything. Think of these ramblings as a conversation over a camp fire, or the rantings of a lunatic over a beer. Apparently I was taking Xanax quite heavily at the time of my motorcycle accident. Xanax by doctor’s prescription because of Menier’s disease. Perhaps that drug contributed to the events that transpired. My twin brother’s blog about the early days of my coma is here Mathew”s Recovery. The most important posts from this blog for other coma victims I copy below and here is another link from the internet.
The purpose of this blog is to help other coma victims, there is a link under categories in the footer of this site called coma that collects my thoughts on the subject taken from posts on this blog.
A list of all the defects I’ve experienced since coma. Thinking about this site and how best to help other coma victims I decided that the best approach would be to tell others of the problems I’ve encountered.
Obviously with my many physical defects resulting from coma, TBI (Traumatic Brain Injury), I’ve found it difficult to get around. Well I’m out of the hospital bed, wheel chair and walking frame but still need a walking stick after nearly 4 years. It’s like the brain is learning to walk again. A child takes a long time learning to walk properly. My ankle appears to be the main problem, I was told in hospital heel first then toe. I need to make the ankle turn up to do that, my left one does it automatically but not the right, I must mentally try to make it turn. Also the toes on my right foot still point to the heavens especially the big toe, I often use my brain to try and make them point straight ahead. Difficult mental adjustments of the toes, they aren’t normal yet. I still can’t use my walking stick with my right hand after years of trying, I do sense some improvement. Neurologists now say the brain can relearn. I go to the gym regularly to try and teach my brain again about my body. We are soon to travel to Vietnam, which will test my mobility again, travelling has really helped my mobility I think. Of course it would, to try and be active and not staying put because of my little problems.
My balance has become bad, I trust my left side much more than my right. Several times each day I try to lift my left leg and stand only on my right, I have to hold somethings while trying, I try to hold with my right but it doesn’t always work. I try to use my right hand on stairway rails. I always find it difficult to stand in the shower but I must do that every day. I try and use my right hand in the shower to wash my hair and lather but must use the left sometimes. Also I try to brush my teeth with my right but still must use the left occasionally, maybe half half.
I get many cramps in my right foot, I’m not using my arm so much because it doesn’t work well, I have to use my foot often to try and walk. Perhaps it’s the use of the foot that causes the cramp but I don’t remember getting cramps before. I suspect circulation has something to do with it, perhaps my mind is reacting and interpreting the sensations of my body differently and not like before and judging unusual stimulation generically as cramp.
I suspect my blood circulation is bad too. I get rashes around my groin that won’t go away after daily treatment. They always return despite extra care. There are suggestions on the Internet that many of the defects I have from coma relate to blood circulation. Perhaps my body has forgotten this activity too, how to move liquids through the body.
I have a hard time putting clothes on especially socks and shirts. I only mention this item because it does trouble me and I’m often thinking about it before I do something. It’s worse at the gym where I must put socks and runners on. When this improves I’ll be considering myself a recovered man.
I always think about needing to go even when I just went. I also had a problem with bed wetting and pissing my pants, always thinking about when to go and how to stop these accidents, I haven’t had an accident pissing unexpectedly for about 6 months because I’m always thinking about it and going to the loo just before bed
Many times when asked to fill in a form anywhere or country arrival form on the plane it’s always difficult. I’ve stopped keeping a diary except for this site, I use my iPhone with the left index finger.
My long term memory is bad and I must try to recall what I did yesterday. I forgot my age recently. Important event in my past I can’t remember, apparently I was married before for a year and then divorced but none of it I remember. Other significant events in my life are also forgotten, various family gatherings and weddings that I attended that anyone would remember I can’t.
I had some guardians which was obviously necessary when I was incapacitated but guardians need to know when the control of a person’s life becomes unsustainable. Important for monetary and legal reasons at the worst of it but not appropriate for a victim who is approaching normality or for the guardian to questions personal, emotional, decisions. It can impede recovery when people don’t take them seriously in their thinking once they can actually think independently and logically again. I received an email from someone who read this site that reminded me of this, my biggest problem from coma. I must have forgotten what troubled me so much a short time ago. The doctors said I would require institutional care for the rest of my life which I guess impacted the guardians thinking. I was recently re-married about 1.5 years after coma, obviously she deeply cares for me to marry a coma victim. And so I left my family for a woman I was with prior to coma, my guardians (family) tried to legally prevent this marriage. We were engaged prior to coma and at the time they tried to prevent our marriage we had known each other for about 10 years. We eventually got married in Singapore, none from my family attended. After we were married I had to legally put an end to guardianship and their attempts to control my life. Every decision as guardian should be to help the victim through this ordeal, not to control. Indeed everyone involved in a new reality needs some time to adjust to the difference, I certainly required that.
I frequently think of something to do or check but just when I’m ready to act I forget what I was thinking. I’m always planning like never before as far as I can remember, planning what to do next. It’s really my memory that makes me think of this section ‘mind’. I suspect that I am the same person after coma , my thoughts and feelings are the same, but I can’t remember. Perhaps this heading shouldn’t be here at all but the ‘mind’ is an important thing for all people and something not to be ignored. I was quite a thinker they tell me before coma, always in my mind, I don’t know what they mean by saying that? Perhaps I am just being myself again with this section ‘mind’ as a heading on the page ‘defects’, and I’m in my ‘mind’ now. At least the heading ‘mind’ reveals my deep rooted defects arising from coma… Maybe they were always there, these deep rooted defects, and only through coma had the opportunity to surface…
We, my wife and I, watched the film ‘coma’ last night that tracks several coma victims over three years. The film was critically acclaimed when is came out and was produced by Lisa Garbus. One of the victims died, another ‘s brain couldn’t process the hearing sensations from his ears. For me it’s the right side of my body. A victim was married after coma like I was, Tom Segars was married to a sincere woman and they had a baby after his coma. Another victim was permanently vegetative. The common effect was the brains inability to process the stimuli of their bodies. An interesting thing in Tom’s recovery was that his father started a blog for him, he couldn’t, which talks of HBOT (hyperbaric oxygen treatment). My own site talks of the same. For Tom his father noticed progress in his recovery after HBOT, Tom could walk in the water unassisted after HBOT, he couldn’t before. For my recovery I too noticed improvement after HBOT. My identical twin brother put me on a course of HBOT at the established therapy center www.hypermed.com.au
I think my memory and mind started to improve when I did each session in an oxygen chamber. The person who administered HBOT was a proven therapist by the name of Mal Hooper. I suspect the only reason I can manage my own blog now is because of HBOT, not to mention my overall progress. Several people contributed to the costs of HBOT hoping for my recovery. So my advice to other coma victims is definitely try HBOT, for me the process was to be put in an oxygen chamber for about an hour each time, the theory being that oxygen is central to the health of cells, especially brain cells. The links below explain for Tom’s HBOT…
Dear fellow coma victims, indeed normalisation is a very slow process, I have concluded that the new pathways in the brain must learn everything again. Heel toe the best and most pressing example. At the gym yesterday on the running machine I noticed even for that, it is the correct way for any movement with the legs. I actually am uncertain the new pathway wasn’t used for something else and it’s unnatural for leg operation. I still need a walking stick after more than 5 years but slowly less and less. I wonder at what age as children we develop a complete command of our body parts. At least not all pathways were destroyed by my coma, I’m imagining how bad it could be and probably is for many coma victims. I always wonder about the non physical effects, like empathy or love etc, so many emotions to consider, are these feelings too located in parts of my brain that were damaged by coma? Then again I wonder if they are actually stored in the brain, maybe emotions (person to person) are in the environment by association and we access such feelings from there. Indeed we are learning much more about reality nowadays with the likes of ‘entanglement theory’. I can believe not everything relating to a humans existence is located in the brain. Am I still an ok person? The same or better or worse? Perhaps my experiences through this ordeal have changed my outlook in general, after all a man knows the things in life by experience. Am I equipped to process all experiences after coma? I can’t help to relate all this to computers having worked with them for so many years, have I lost a little RAM? Certainly my hard drive is a little damaged. Much of my data sensors still work, eyes and ears etc, maybe a little worse too. Medicine suggests we can reroute the brain, the organ can adapt to changes, I don’t know how doctors measure this ability. Through trial and error I suspect by the many coma and stroke victims that have gone before. I am no doctor but always try to recover, often consider it and the best approach to all actions. This is merely a record of my attempt and what I think has worked for me. I sometimes look for approaches to recovery online, with anything at my disposal and enquire from doctors whenever I interact with them. It seems the brain hasn’t forgotten it’s disfunction, my ear problems Tinnitus and Meniere’s disease have returned a little among other things I previously had. They were both terrible before coma and I haven’t really had them just a little about 2 years after coma, my hearing and blocked ears bother me now but I’m often addressing it. Maybe the human brain does resemble a computer and I’ve been rebooted loosing my RAM at the time of reboot. Anyway the long and the short of this post is that we must use the brain to evaluate everything we do to rebuild it correctly. Pay attention to all actions, with every step and emotion. By my experience it is only by doing this that we improve towards normality whatever that is, what is truly normal for humans, we have defined it through laws and politics. Maybe we should become like Trump. Just a note a while later, my friend was advised to focus on heel toe after a leg injury, perhaps it’s a detail we all must be aware of, not just coma victims, something the brain must rehearse.