QUILTING WILL DOMINATE THE NEXT FEW MONTHS

TIME TO GET THIS FINISHED - 10 YEARS WORK IN PROGRESS

Thursday, November 7, 2013

TODAY A MORE POSITIVE NOTE ..... THIS TED TALK EXCITES ME ON MANY LEVELS.


This morning this Ted Talk arrived in my mail box.


Regardless of your stance on using animals for medical research there are some things for which we have no alternative. I suggest that if you cannot abide research using animals you do not watch the video although the rats are treated lovingly and extremely well.

We have a special and personal interest in Spinal Chord injuries.

Our middle son became a paraplegic, actually he has partial paraplegia, two weeks before his 22nd birthday.

At the time we were living in Reporoa, near the tourist city of Rotorua, where John had a new job at the Reporoa Dairy Factory. He was an experienced and skilled maintenance engineer. He had several years of working for the New Zealand Dairy Company, which is now the giant international conglomerate Fonterra, under his belt. We were recovering from a financial disaster and this job provided John with an income that put us on our feet once more. The financial disaster is another story but to put it in a nutshell I began a business which was supposed to take us into retirement and beyond. My financial naivity put us into bankruptcy on paper if not in legal terms and we lived on the smell of an oily rag for 4 years while repaying all our debts.

We had sold our house and were renting a large house on a farm. We left behind two of our adult children and a nephew along with most of our stuff while we began to sort out our own life. For three months John and I lived much as we had done as newly weds. We only had the most essential furniture and chattels such as bed, two camp chairs, plates and cutlery for two. We had a similar income but all our disposable income went to debt reduction, we lived in a company house on our own with no children for the first time in 26 years, and we were building a new life together. First Greg then our youngest son returned home for a period. Our alone time gone for some years.

Late into the evening of October 30th 1992 Greg and his same age cousin jumped on Greg's motorbike and went to the pub. This was not unusual. Both these 21 year old young men thought they were bullet proof. Despite many warnings and parental anxiety, they continued to drink more than they should and what was so much worse.... Drive.

We received a call from a distraught daughter in the early hours of the following morning. The boys were both in intensive care at Waikato Hospital and had serious spinal injuries. That is not the call anyone wants to be woken by. John and I had similar reactions. This is the big accident. The one we hoped would never be, but we were happy. They were alive. Greg was an accident waiting to happen. It was not his first and we have many stories of rescues including collecting him when petrol ran out to other crashes.

This time they were returning from their night of drinking. Neither seem to be able to tell us exactly what they were doing during those hours. Greg was driving, his cousin was pillion. Greg says he fell asleep on the long straight and woke to see the sharp right angle bend where the road crosses the railway line. He yelled at Jason to jump but I doubt they did. He drove into the steel barrier protecting the bend and they landed on their behinds. Greg also received a blow to his head which wrecked his helmet. A friend was not far behind and called the ambulance. Details are sketchy but both young men suffered compression fractures of their spines.

We were in a position where John could take enough time from work to spend at the hospital and reviewing the future. The rented house was packed and our daughter moved in with another nursing friend closer to her work.

Our nephew had three shattered vertebrae but no spinal chord injury. After surgery to fix the vertebrae with a steel rod he continued to lead a normal life. Greg had similar surgery and a rod to fix two damaged vertebrae but he was broken, permanently. There is no cure for a damaged spinal chord. The surgeon did give Greg some hope. The spinal chord was not severed. It was crushed but not totally severed. Recovery would depend on how much necrosis of the chord occurred. This would determine which particular muscles would function naturally given time to heal along with rehabilitation. Greg has an incredible determination and worked hard in spite of much negative comment from some medical staff. Instead of being encouraging, (apart form the original surgeon), there was a general attitude of never raising one's hopes too high. A devastating stance for a healthy young man.

Time went by and Greg became able to stand unsupported for about 60 seconds. He learned to walk with a walking frame and even today he puts his wheelchair in the boot of the car and supports himself on the car as he edges his way round to the driver's seat. Unfortunately he has put on a lot of weight some of which can probably be attributed to his medication. His brain injury from the accident which went unrecognised and therefore undiagnosed for a couple of years. Greg, in fact all of us, had to learn to live with his partial paraplegia. But while he could learn to activate the few nerves that worked there were other serious difficulties in the pelvic, urological and genital area which have caused him untold problems physically, not to mention emotionally and mentally.

Imagine a healthy, fun-loving young man who has to come to terms with sexual disfunction not to mention bowel problems and having to use catheters to urinate. Greg has chosen to catheterise himself rather than wear a permanent bag which would be a hindrance when walking on crutches. He has looked on with hidden envy as some other paraplegics, whose injuries were more serious than his, go on to father children. He went into a shell and no longer socialised normally because he was afraid of falling in love and not having a complete relationship.

This same young man is now a few days away from his 43rd birthday and beginning to suffer ill health. Many urinary tract or bladder infections, have left him at risk of kidney disease a common risk for paraplegics. His weight and poor diet on top of his disability not only are detrimental to health but are spoiling his enjoyment of life. He has damaged his wrists and shoulders from walking on crutches and of course has had to put them aside. He and we, hope that by losing the excess weight he will become a little more freely mobile again. Unless he changes his diet and loses weight his future is starting to look grim.

We look at the courage of sports people with spinal injuries and have some idea of the work they have to put in to be active not to mention the difficult recovery if they are injured or have other related health issues.

Greg has made a life for himself in spite of a very limited income. We have a no-fault Government funded accident compensation system which is related to income at the time of the accident. Greg was a student so is on the lowest possible ACC income. It hasn't been all bad and he has had more help from ACC than we could have provided. Today he has several flat mates to help pay his mortgage. He has joined the Model Aeroplane Club and enjoys getting out with club members who are always willing to teach and help him. Since some are elderly they have an understanding of disability that is not always found in the general public. A bonus for Greg is that most of the participants are men. He longed to ride a motor bike and feel the wind on his face again. No trike for him!!! After trial and error he now has a BMW with sidecar. My mother's heart did sommersaults the first time I saw him preparing for a ride. He straps his feet to the pedals with velcro since he would not be aware if a foot slipped. He spent many hours working out how to modify the controls and then worked with mechanics to achieve a practical solution. He has much to be proud of.

For some years we have been aware of research to reverse spinal chord damage. There was the high profiled courage of Christopher Reeve who put a lot of effort into stem cell research using embryo stem cells. This is something I find highly unethical but it's all part of the learning that goes on to find a good solution. There is a lot of work being done by researchers using one's own stem cells, in particular, some nasal cells which have special properties. This research continues and I believe there is experimental surgery being scheduled in New Zealand. At present this is only going to be available for recent victims of complete severing of the spinal chord who are young and otherwise healthy.

GrĂ©goire Courtine, the Research Scientist in the video has a heavy accent which I found hard to understand. I had to listen several times. He has been experimenting along different lines using some kind of eletcro magnetic stimulation and robotic patterning. I kept thinking it needs to be combined with a no grain, low sugar or low carbohydrate, high fat diet. Can you imagine what this kind of research might mean in the future for anyone dealing with neurological disease?

One day people who suffer an awful spinal chord injury will have the hope of total recovery. Greg's injury was at T12. That's somewhere in the middle of his back. Imagine what success will mean for people with higher injuries such as C5, which is the middle of the neck. Imagine the hope this gives a complete tetraplegic, someone who cannot speak or turn their head or use their hands. This might even bring healing to those sufferers of Bells Palsy who have permanent damage. There is no end to the hope this will give people with neurological damage.

We still seem to be many years from any of these treatments becoming generally available but ..... one day.

There is a second message in the talk and I hope no-one misses it. In case you didn't get it this is an inspirational message to anyone who wants to do something new, someone who wants to think outside the box, to think creatively. I am a great fan of people who can stretch their imaginations and then set to make it work be it science, art or something more prosaic such as solving a small maintenance fix-it.
ACROSS THE ROAD
I love red cattle. These are probably a hereford cross. They are in the paddock across from our house. Taken a couple of days ago when we went for a walk to the beach.

2 comments:

Phyllis said...

Wishing nothing but the best for Greg and your entire family.

Chris H said...

How sad for your son.... but it sounds like in some aspects of his life he is doing well.
I hope he does realise that losing weight will make his life that much easier/better.
As you know though, a person has to want to lose weight for themselves, no amount of advice from others will do it.