I am watching the debate.

Let’s see if Mr Seymour will take into account the huge concerns.  Let me start with a little description of the current state of the Bill.  I will stop opposing the Bill only if the issues below, that I have discussed in my submission to the Parliament in March 2018, are properly addressed.

The severe lack of safeguard

In this badly written bill

Shows arrogant disregard

For the disabled and ill.

To ignore the concerned voice,

To let one end ‘nother party,

He might've made end of life choice

For the life of his party.

The End of Life Choice Bill has not enough effective safeguard to prevent or detect misdiagnoses and inaccurate prognoses, coercion and manipulation, cost-cutting and greed.  The Bill allows eligibility for euthanasia and assisted suicide based on one doctor giving diagnosis and prognosis, and one or two doctors verifying competence, but no examination from the courts or police.  The Bill cannot ensure that the doctors verifying competence has access to diagnostic tests – it requires only a superficial examination and paperwork.  It is too easy for the “eligible” person to be influenced (intentionally or not) or even pushed to take that option, when there are so many gaps in the healthcare system.  The government is not even funding certain drugs that are funded overseas.  It is not providing CBD to relieve suffering and some life-saving cancer drugs.  Decriminalising things may be a politician’s popular decision, but is it helpful?  What can you choose?  Assisted dying?  More pain with less hope?  Or rob a bank?  Also, the “eligible” person can easily be made to feel like a burden to their family and society.  Look at our shocking elder abuse statistics and disability discrimination.

I think the Bill needs to earnestly have the strongest safeguards possible to ensure actual, not just theoretical, free choice.  At the very least, there needs to be better support for the ill and disabled before enacting assisted dying legislation.  Also essential is additional oversight from the courts and the police to prevent and detect coercion and manipulation. In Montana, assisted dying has to go through the court. In Switzerland, assisted suicide cases are attended to by police as usually "open and close" cases. In the Netherlands, Belgium and Canada, the safeguards have not been adequate.

Government must address its own role in setting policies and practices before having national conversations about the eligibility of disabled people for legislated assisted dying.  In the spirit of social justice, our law needs to protect everyone including the vulnerable.  Government should not build a road to death for disabled people before removing roadblocks on the road to a full life.

We should ensure access to good palliative care for everyone needing it.  No person with terminal illness or grievous irremediable medical condition in a developed country like New Zealand should be in so much suffering that he/she chooses death over living.  When seriously ill patients receive good palliative care, they rarely want to end their lives.  The truly compassionate response is to ensure that everyone has access to the best physical, emotional, social and spiritual care they need, when they need it.  We should show that they matter, they are not a burden and we care about them, so that even those with no hope of recovery have the hope of loving and being loved.  ‘Assisted dying’ cannot address the non-physical reasons behind such requests.

Government should legalise and allow access to non-psychoactive medicinal cannabis for people in chronic pain that cannot be effectively addressed by other pain relief.  Many people suffering from chronic pain also have terminal illnesses and/or grievous irremediable medical conditions.  It would be cruel to offer them ‘assisted dying’ but not allow them to live with higher quality of life and less pain.

Mental health services need to be improved to address the issue of high rate of suicides and suicide attempts, including those of ill and disabled people.  All suicides are tragedies, whatever the method and rationale.  We need to be consistent in valuing human life as a civilised society. Government departments like MOH and MSD could work with non-profit organisations in suicide prevention and in providing social and spiritual care.

The safe way of honouring the right to die is to ensure that do-not-resuscitate orders and refusal of treatment, nutrition and hydration by the patients are honoured.  Government could make advanced directives legally binding, ensure patients have appropriate information on their rights, and impose significant penalty for artificially keeping patients alive against their clearly expressed will.  More efforts could be made to prevent healthcare facilities from profiting from artificially keeping patients alive against their will.  We already have the right to die (just not to choose when and how), so we should not be in a hurry to legalise assisted dying and, at the same time, sacrifice the safety of the vulnerable.

We should wait for most of the developed world to demonstrate with compelling evidence a safe way of allowing assisted dying before we consider legalising it.  Any law change that will lead to death must be carefully investigated.  An assisted dying law is safe only if nobody dies by it under external pressure or influences.  Those who are eligible for assisted dying ending up dead is not an indication of safety.  Granting a tiny and vocal minority the choice to be killed will undermine the choice of many others to live.

I oppose the Bill because choices are not made in a vacuum, and there are too many appalling risks.  in a time of fiscal austerity, and with an aging population, with a high suicide rate, and discrimination against disabled people continuing a problem, we ought not to offer killing (even at one’s own request) as an acceptable medical alternative.  Pressure upon elderly people to get out of the way, more expensive palliative care being elided in favour of death, and disabled people’s safety at risk; all of these things become more likely if assisted dying becomes legal without adequate safeguard.

Taking the rough with the smooth

One day, my father and I were looking at the clouds after some heavy rain.  He pointed at one of the clouds and said to me “that cloud has a bright silver edge”.  I quickly replied “every cloud has one”, but then I wondered if the old saying “every cloud has a silver lining” was really true.

I amused myself by examining it literally.  Apparently, some clouds have silver lining, some have golden lining.  But some don't seem to have any, especially at night.

In life there are pleasant things that we call good and the unpleasant we could call bad.  But how do we take the rough with the smooth?

I would like to share with you some ways of accepting the unpleasant aspects of life as well as the good.  I will compare three methods of doing so.  The first one is to satisfy your own needs.  The second one is to find explanation for the causes of unpleasant things.  But the method I find the most useful and powerful is to look for the purpose and see how unpleasant things can result in good things.

Unpleasant things can make us sad and stressed.  To avoid burn out, it is necessary to satisfy our physical, psychological and spiritual needs.  Apart from the very basic physical needs like food, clothing and shelter, we should also take care of our mental health.  According to the Mental Health Foundation's Five Ways to Wellbeing, to stay mentally healthy we need to: 1) connect with the people around us, 2) give by doing something nice for others, 3) take notice of the world around us to appreciate what matters to us, 4) challenge ourselves by learning new things and seeking out new experiences, and 5) do what you enjoy and be active.  The most direct way of coping is doing what brings happiness.  Do a few simple things that makes you happy, for example consuming chocolate, coffee and cake, and hobbies like sports, swimming, skydiving, shopping and spending time with loved ones.

But that's not all.  We want to know why.  As humans, we ask why unpleasant things happen more than why good things happen.  Throughout human history, we have spent thousands of years to explain the causes of suffering through religion, philosophy and science.  Some believe in Karma – that good and bad things are the result of good and bad deeds respectively.  Some believe things do happen for no reason – it's just luck.  Some believe we can still be happy if we have a clear conscience that the suffering is not caused by our own fault.  Scientists have found the causes of various illnesses, which paves the way for finding cures.  Sociologists have identified causes of poverty.  Psychologists have also found that negative thinking contribute to the perception of pain.

However, I'm still not satisfied with just the above explanations.  Most of the time, you need to take action before the good results.  The purpose becomes clearer when you actively seek it with positive thinking and actions.  Tough times test us to reveal our strengths and weaknesses, which help us find our ways.  When you think more positively, you'll realise that things are better than you have thought.  Tough times teach us compassion, which enables us to help and support others going through similar situations.

Purpose is more important than the cause.  Let’s not focus on the past cause, but look at the future effects.  There is a purpose for things that are considered bad like a disability.

In this imperfect world, there's pleasure and there's pain.  If you don't see a silver lining, perhaps there's a golden one.  And if you still don't see any, wait for the morning after.  In every bad situation there is an element of good.

#MyBeautifulStruggle

Happy New Year!  Long time no blog.  So let me come back with a vengeance.  A few months ago, I did a speech titled #MyBeautifulStruggle at my Toastmasters club.  I skipped parts of what I had prepared because I couldn’t fit it all in within the time allocated.  To fulfil my promise to some of my friends, I’m putting the full version here along with the references.  Sorry to keep you waiting.  Life’s been hectic these few months as I’ve been spending so much time on finding and settling in my new home.

Here we go:

Recently I stumbled across an article about a 25 years old makeup artist called Jordan Bone.  She does beauty tutorials on YouTube.  Some viewers asked her “What’s wrong with your hands?”  So she published a video titled “My Beautiful Struggle” to educate her viewers.

Jordan broke her neck in a car accident when she was 15.  She can’t open or close her hands, so she uses her mouth and arms to put on her makeup.  She practised and practised until every lash was covered in mascara, even if half of it was down her face, but she eventually found her way to do her makeup and even teach others through her YouTube channel.  She said it’s a miracle for her.

Jordan has been raising road safety awareness and has become a motivational speaker.   She encourages her viewers to share the challenges they've faced in their lives and how they've overcome them using the hashtag #MyBeautifulStruggle.

You may be surprised that story is the introduction.  I never said I was beautiful and I don’t use makeup.  In fact, I will talk about my beautiful struggle, along with the good, bad and ugly.  I struggled for years before I could talk about DMD in the public for the first time last month.  My previous blog post was like an encyclopaedia entry.  Now I will get further out of my comfort zone to tell you how I cope with my challenges.

What’s my ammunition against this awful ailment?  Is it the medical treatment?  Is it the research in finding a cure?  For me, the main thing is positive attitude.  For every challenge, there’s a way to get through.

When I was little, I struggled to run so I went slower.  I struggled to climb stairs so I pulled myself up the rails.  I struggled to walk without falling so I started to use a wheelchair.

In my teens, my arms got weaker so I got a power chair.  I was not sporty but I was brainy so I became a nerd.  I gradually lost the ability to use the computer keyboard so I started to use the mouse instead.

When I became an adult, I just wanted to be normal.  I wanted to study fulltime at university, have a girlfriend and make money, just like the majority of my friends.  I did study full-time for 2½ years before winding down to part-time; I didn’t have enough time for friends or a girlfriend; but I did get into an internship in an IT company that offered me a scholarship.  Researchers found a cure for the mouse model of DMD, so I just assumed I would be cured in a few years and get my life back, as if the world owed me.  I thought I could just study and work hard, and then I would get everything I wanted.  I pushed myself over the limit.  I became angry when I didn’t get the miracle I expected.

After graduating from uni, I tried to make heaps of money as a means to get a normal life.  I believed money could buy happiness and love.  I worshipped the wrong thing.  I was a fool.  Fortunately, my currency trading failed because I was too eager to win.  It taught me that money is not everything.

Now I’ve accepted that I’m not “normal”.  Who’s normal anyway?   We are all different.  My body has not been healed yet, but my soul has.

This is not a perfect world.  Going through tough times is just part of the human condition.  Friedrich Nietzsche said “To live is to suffer, to survive is to find some meaning in the suffering.”  However, suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame.  Adversity has taught me humility, empathy and positivity.

This quote from Michael J. Fox makes so much sense: “Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.”

I’m not inspired by movie stars just for their wealth and fame.  I’m inspired by people who don’t give up, those who give their best shot at getting through challenges, and even helping others in need.    I admire people who stay true to themselves, getting further and further out of their comfort zone.

Positive attitude is not wishful thinking.  It’s not assuming we’ll always get what we want.  It’s true happiness from within, whether you’re in riches or in poverty, in sickness or in health.  Even if you can’t get out of a sticky situation, you can overcome by getting through.  Even if you have a broken body, you can still have spiritual supremacy over sickness.  Even if it’s hard to be brave, don't sell your soul to the safe surroundings.

I hope you like the sense of humour in this speech.  Yeah, I was trying to make you feel good, like how I enjoy being inspired and entertained when I listen to my fellow club members’ speeches.

I wish you a happy and successful 2016!  May you have faith and hope every time you climb a mountain.

World Duchenne Awareness Day

You’re cordially invited to the 2015 World Duchenne Awareness Day event at Cornwall Park on Sunday 6 September.  The event will be from 10am onwards.  It will be set up near the new café.  To show your support for people affected by Duchenne Muscular Dystrophy (DMD), you can:

• ·         come to the event,
• ·         buy a virtual balloon from www.duchenneballoon.org,
• ·         get Dinosaur Mac’s Discovery – a children’s book written by the mother of a little boy with DMD here,
• ·         read some real life stories of people with DMD at www.worldduchenneday.org ,
• ·         reading this essay on my blog,
• ·         or just think about the DMD community.

Since the event clashes with Father’s Day, I will also appreciate your support in spirit.

World Duchenne Awareness Day is coming up very soon.  Last year was the first international awareness day for Duchenne Muscular Dystrophy.  September 7 this year is the second one.  But before I convince you to do anything to support the cause, I’m going to tell you a story about a boy.  Then I’ll explain how the story is relevant to the topic and what Duchenne Awareness Day is all about.  I hope you will support the people affected by this condition with cash, with your action, your presence or in spirit (not the kind of spirit I can drink to make me walk).

Let me tell you the story.  A boy was born about 30 years ago.  At the age of one, nothing was unusual – he was very active and was walking.  At the age of four, he often said he was tired and asked his parents to carry him, especially when his mother walked with him to school.  At six, he started having trouble climbing stairs.  At seven, he started to fall, and eventually fell every day, so his mother gave him some kneepads to protect his knees.  At ten, he lost the ability to walk.  He was diagnosed with Duchenne Muscular Dystrophy at about seven.  By the way, this boy was me.

If this essay is too long, you can scroll down to the bottom to read a curious fact about Ferrari.

Disambiguation

This condition is named after a famous French doctor Duchenne de Boulogne (1806 – 1875).  There are several conditions named after him.  World Duchenne Awareness Day is about Duchenne Muscular Dystrophy (DMD).

Causes

It is caused by a defect (oh I’m using this word) in the dystrophin gene.  Normally, a functional dystrophin gene produces the dystrophin protein, which wraps around muscle fibres to protect the muscles.  In a person with DMD, dystrophin is absent and the muscles, mainly skeletal muscles, get damaged.  About 1 in 3,500 males born has this condition.  It is passed on from the mother or caused by a random spontaneous mutation.  The dystrophin gene is in the X chromosome. Only 1 in 50 million females has this condition because females have two X chromosomes, two copies of the dystrophin gene.  If one copy is not working, another copy acts like a backup.

Symptoms

These are some of the symptoms of DMD:

·         Awkward manner of walking, stepping, or running

·         Frequent falls

·         Fatigue

·         Muscle contractures

·         Eventual loss of ability to walk

·         Abnormal heart muscle

·         Respiratory disorders

Another symptom is the Gower’s sign – when the child uses his arms to “climb up his knees” to get up from the floor.  If the child is three or four years old and is still doing this, he needs to get checked by a doctor.  But if the child is one or two, it’s quite normal and you don’t need to worry.

Diagnosis

Several methods are used for diagnosis.  By blood test: if the enzyme creatine kinase level is very high, it indicates muscle damage.  There is muscle biopsy to find out if the muscle cells are normal and if dystrophin is present.  There’s also DNA test for confirmation.  Also, if there’s family history of the condition, prenatal tests can give early diagnosis so the child affected can get better support.

Treatments

These are common treatments for people with DMD.  The steroids Prednisolone and Deflazacort can slow down the progression of the condition by slowing down muscle damage.  Prednisolone has very bad side effects like weight gain and bad mood, but Deflazacort is not funded by the NZ government.  Some parents of boys with DMD are fighting to get the government’s drug funding organization PHARMAC to fund Deflazacort.  Mild physical activity and physiotherapy helps with mobility.  Spinal fusion surgery is also common for DMD.  Last time, one of our club members had spinal fusion for his back injury.  But for DMD it is done because the back muscles get so weak that the person can’t sit straight.  Respiration assistance is needed when the person with DMD gets older – the equipment includes ventilator and cough assist machine to help with breathing and coughing.

Research and development

Much research is underway to find better treatments and hopefully a cure for DMD.  Apart from developing better medicine against muscle damage, scientists and medical researchers are looking into exon-skipping, stem cell and gene therapies.

Exon-skipping therapy for DMD involves developing drugs that can manipulate the muscle cells into skipping certain parts of the faulty dystrophin gene, so that the cells can produce an incomplete version of dystrophin to give the muscle fibres some (albeit limited) protection.  The dystrophin gene is like a jigsaw puzzle made up of 79 pieces (called exons) that should fit together in a single file.  If the information in the gene is correct, the cells will produce the right stuff.  If the pieces don’t fit properly, the cells will most likely read up to the faulty part of the dystrophin gene and destroy the corrupted product.  It’s like an error in a computer program that crashes.  Depending on the particular genetic defect, exon-skipping may or may not help produce dystrophin.  For some people with DMD, certain drugs can make the cells skip a block of exons, continue reading to the end of the gene and produce some partially useful dystrophin.  Currently a pharmaceutical company is funding and running an exon-skipping drug trial for boys with DMD internationally, including three boys from NZ.  However, they and their families may be unable to afford the treatment even if the trial proves successful.  Even if successful, this treatment may not be a cure, but only a way to delay the deterioration.  The pharmaceutical company, seeking return on investment, will likely charge very high fees for treating a rare disorder.  This leads to ethical issues regarding the government’s health funding.  In what circumstances should the government provide or not provide a certain treatment for a person with a rare disorder?

Researchers studied the potential of stem cell therapy on animal.  They studied a type of stem cell called pericytes, which are located within the blood vessels of skeletal muscle.  They found that pericytes can be injected into arteries, cross through arterial walls into muscle and turn into potentially functional muscle.  Stem cell therapy with pericytes may be useful for DMD if the pericyte-derived cells can get into injured regions of skeletal muscle.

The aim of gene therapy is to correct the faulty gene.  In a mouse model of DMD, researchers found a gene editing technique to precisely remove a genetic mutation, allowing the body’s DNA repair mechanisms to replace it with a normal copy of the gene.  However, this technique is not currently feasible in humans.  Another kind of gene therapy uses viruses to ‘correct’ the faulty gene.

Famous person

A world famous person with DMD is Alfredo Ferrari (1932 – 1956), nicknamed Alfredino or Dino.  He was the son of Ferrari founder Enzo Ferrari. He designed the 1.5 L DOHC V6 engine for F2 at the end of 1955.  His namesake automobiles Fiat Dino and Dino (automobile) were produced after his death.

To be continued…