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Tuesday, May 31, 2016

Haiku on Song/ Joy/ Over/ Shower


The song in my heart
Sometimes struggles to be heard
Above the clamour

Today of all days
We sing of peace and kindness
Songs of future hope

We all sing along
To blessed songs of Christmas
Even with no voice


Watching small children
Tearing packages apart
Realising joy

A mistletoe ball
Stuck high in winter stark trees
The joy in a kiss

The awakening
You snuggled warm in my arms
Complex simple joy


We are over here
And you are all over there
How did that happen?

Overwhelmed with gifts
Overcome with excitement
Over Christmas tears

Words overwritten
Thoughts overcome by feelings
Overall at peace


A shower of rain
Left my graffiti all warped
Water based spray paint

Standing in shower
Body warped by rivulets
Such fluid beauty

Our politicians
Minds warped by power hunger

Need a cold shower

Monday, May 30, 2016

Transverse Myelitis and Fear of Recurrence

As I noted in a previous blog, I have had a small number of falls, and the latest one about a month ago left me wondering whether I was actually going to regain my progress. More than that I became quite anxious about the possibility of a recurrence or further development.
Before going on, let me say that I know how lucky I am. My original episode was in December 2009, and I have been able to get back on my feet and walk (in the last year with a stick… well I am 72). I know that many of you have been left with more handicaps than I have, and having read posts on our TM sites, I have noted the fact that many of you have had serious recurrences. As I said, I have been lucky so far.
I am also aware that many, if not most of you (whether you have advances in your symptoms or not), must be wondering what the future will bring and how you will cope.
My own experience is that I have good days and bad days. On a good day, I feel bright, want to complete several tasks, and I am keen to either get on my exercise bike (25 mins three times a week or so) or go for a walk (somewhere between 800 to 1500 metres about three times a week or so). On bad days (and these are not connected to exercise the day before!), I don’t want to get up early, would prefer to sit around, and find it hard to think or write, or do anything else constructive. It is on these days that I wonder exactly what is going on in my brain and spinal cord.
Bad days are accompanied by an increase in the severity and acuity of my referred chest pain (T6-8), mainly on the right and often end with me needing to use my TENS machine to relieve the pain. I am aware that the increased pain may be related to activity on some days. So yesterday Jan and I cut up finely a dozen or so limes and cumquats and ginger, and Jan then proceeded to make some marmalade. Yum! But today, the area of referred pain is broader, though tolerable. I know I have done some work with my arms and back muscles.
The fall from my chair, described in my last blog left me with some new symptoms over the next couple of weeks, and brought my fears to the fore. Yes, I had a very sore rear end from the bump onto a bum that lost a large amount of muscle tissue in 2009. But I also seemed to lose sensation, particularly in my right foot. My calf muscles seemed to be more flaccid and did not seem to work as well. My foot placement when walking became erratic, and I started to use my stick around the house to give me stability. I was immensely tired, and had a string of the bad days described above. I lost energy and enthusiasm, slept longer and till later in the morning, and was really quite dispirited. I was recurrently angry at myself for the fall and for not taking more care. Mostly I was cross that I allowed myself to lose concentration. I am usually so careful, and think and plan movements through.
There was an additional problem, maybe totally disconnected to TM, but which certainly followed the fall. In 2008 when I did my second Dan Karate grading, I failed to block a punch to the head (duh!), and got whacked in my right eye. I had lots of ‘floaters’ after that. Some weeks later lifting a 20Kgm bag of cement to complete work on a garden path, I had a very pretty ‘solar flare’ in my right eye, and new I had a retinal detachment. To cut a long story short, I had emergency treatment, and have had lots of follow-up treatment for both eyes to reduce the likelihood of further problems.
So, my jolting fall seemed to be associated with an increased loss of the range of vision in my right eye. No flares, no floaters, just increasingly fuzzy and limited vision. The question I asked myself was whether it was connected to the fall or to my TM. Was I actually developing Neuromyelitis Optica (NMO) as part of the disease process? Or was I just looking for problems and being hysterical? Well, we go to the Ophthalmic Surgeon for follow-up on Wednesday, so I will ask the question. Hopefully, he will reassure me and tell me not to be stupid.
There is an additional problem that may or may not be connected. From time to time during my bad days I find it difficult to concentrate. Like many people in their 70s I have also begun to forget bits and pieces in my short term memory. It seems to have been more noticeable since the fall. It is noticeable more because I have always had a fantastic memory for names of people and things, and anything connected with my career and research interests. I have always been Jan’s ‘ancillary memory’. So, my question relates to the possibility that my TM is advancing and moving me more toward a picture like early Multiple Sclerosis. Maybe. Or am I just looking for problems and being hysterical?
The problem is that there is not much to be done whatever the outcome. If I am not progressing, I must continue with my daily routines and tasks. I must complete the work that I have set myself in retirement. We must continue to work on the house and garden. I must continue my exercise regime. I must continue to eat the fantastic diet that my dietitian wife Jan has designed for us. I must continue to be as optimistic as possible. But perhaps plan for the worst?? Maybe.

Discussion and comments welcomed.

Sunday, May 29, 2016

Transverse Myelitis and Falls

I remember the first time I fell. It was in the first weeks of my TM when I was coming to the end of my month at the Spinal Unit, and beginning to get mobile on a walking frame. The physio was teaching me how to get off a softish couch and use the frame. Given I could not just use my quadriceps to straighten my legs to stand, he wanted me to shift my weight forward onto the front edge of the couch, and get my stance correct before standing. Not understanding that I could not put my whole weight on the walking frame I leaned forward, the frame fell forwards and so did I. Luckily there was a gym mat under the frame, and my fall was cushioned. No damage physically. Just my pride… From Karate teacher to fallen idol in seconds.
That is the point. When falls happen, they happen very quickly, and you fall as if with a dead weight. There is a sense of unreality, as if momentarily your mind is out of gear. It is not that you are stunned by hitting your head (unless of course you have hit your head); not a loss of consciousness. I have not had a spinning sensation, but there is an unpleasant feeling of being totally out of control.
I had a couple of falls in my last two years of work in private practice. In the first, I had finished a consultation with a family in which the daughter had played happily with the doll's house, its contents, and almost all the Lego out of a plastic bucket. I had a few minutes to tidy up before the next patient. I must have over-reached myself bending forwards to pick something up, and within seconds I was laying on the floor. Somehow I had turned side on and broken the fall with my arm and shoulder. Luckily the floor was carpeted, and I did not fall on too many small objects. So I lay there for a minute or so, shaken, cursing my stupidity, and checking myself out for damage. Then I carefully got to my knees, and holding onto a table, pulled my self up. I sat for 5 minutes and then went on with the day.
About two months later, there was another lesson. I was entering my consultation room, and someone called my name. I turned to answer, and found myself on my behind and back. Again, unconsciously I had partially used a ‘break fall’ technique with my arms; again it was onto carpet. A couple of colleagues helped me to my knees and then my feet, I sat in a chair for 5 minutes and then went on with the day as if nothing had happened. No obvious bruising later; just my pride. I suspect it was the quick turn to answer the question that prompted the problem. I do not remember any dizziness. To be honest, I think I probably crossed my feet as I turned. As all of you know, that is an absolute ‘no-no!’
So one lesson was to do things a bit more slowly, and make sure of a secure base before grabbing objects off the floor. Behind this lesson is another: “Think it through!” It is almost as if you have to do a ‘micro-plan’ to ensure secure steadiness. The second lesson was “Never turn to answer someone quickly…” Always take your time, and ensure a steady base using all the skill you gained from physio. Another lesson might be to ‘Ask for help…’ I have never been any good at this. I have always seen myself as a ‘can do’ person, and sometimes even a ‘go to’ person. So it has been hard to learn to ask for help. A couple of blows to my pride. But then as we all know, “Pride comes before a fall!”
My most recent fall cost me two weeks of recovery, and a slowing down in my exercise program, as well as loss of pride (again). I have been using an office chair on wheels at the dining table. It is the one I took from work when I retired in December. It has always been very comfortable, with tons of give in the backrest. Of course there is the advantage of some movement across the bamboo flooring of our dining room. Well, I had always seen it as an advantage…
I had been to the loo, and was returning to the table to continue a discussion with my daughter, home for a few days. I guess I was distracted, and excited by our daughter being at home, and thinking about the conversation rather than my safety. I had always had a routine in using the office chair, ensuring I had both armrests held firmly and also that I was well into the chair before actually sitting. Sadly, on this occasion, I did neither. I had not really fully grasped the arm rests, and as I went to sit, the chair moved backwards on it wheels, and I sat straight down onto the bamboo floor. In addition, my torso went backwards following the chair, and the nape of my neck hit the edge of the seat of the chair. This time I was stunned, for a moment or two. Once again, I spent time working through whether I had damaged more than my pride. My behind was definitely sore, and I knew I was in for some bruising. My head ached, and my neck was sore - if fully functional. Eventually I turned over got to my knees, and with some help stood up. I then grabbed the chair and sat down properly to finish the precious conversation.
This time, I was physically damaged. The bruising to my gluteal muscles meant that I had immense problems walking, and putting pressure on them to climb stairs. It would catch me unawares, and would have to stop, wait, and then try again. I suppose I was exceedingly lucky not to have had a worse head injury.
 But two weeks later I was still struggling to get back into the rhythm of our lives. And I lost more pride. And I lost some confidence – which has been hard to restore.
There is another problem. I wondered often during those two weeks whether I might have shaken up or otherwise damaged my spinal cord inside my spine, which I had soundly jarred.  I certainly have had an increase in my recurrent right-sided T6/7 referred chest pain, and had to use the TENS machine several times.

This fear of recurrence is something we all live with, I guess. But it is a story I will tell next time.
In the meantime, I guess you all have stories about falls...

Saturday, May 28, 2016

Haiku on Lazy/ Cut/ Fly/ Lucky


The quick brown fox jumped
Over the lazy dog's house
Gave 'return' a miss

Miss those lazy days
Teenage summers on the beach
Learning chemistry

He was so lazy
Always late for everything
Missed his funeral


A small paper cut
Has troubled me the whole day
Why did I do that?

Little miss snooty
Thought herself a cut above
Then she fell for him

Your behaviour stinks
It does not cut the mustard
You can do better


I am in a flap
If I weighed less than I do
I might even fly

Fly around the world
Met fly going other way
Quite a buzz really

Owl with no morals
Stealing prey from other owls
Real fly by night


Lucky it rained today
Refreshing the earth with tears
The drought is broken

Able to study
And work hard for fifty years
Guess I am lucky

Counting my blessings
I soon ran out of fingers
Lucky I have toes