'My All Black father had dementia - now I have it too'

As he got older, Alan "Ponty" Reid would share vivid memories of his All Black games and teammates. Known for his diminutive stature at 158cm and weighing 58kg, he captained the 1957 team during its only test series that year, in Australia. But any memories from after his heyday had vanished.

Reid was diagnosed with frontotemporal dementia, a term given to a group of conditions that affect the frontal and/or temporal lobes of the brain, at 56. He died nine years later, in 1994.

Symptoms of the aggressive disease tend to occur earlier than other forms of dementia - generally in the 50s or 60s - and it has a faster rate of decline and a shorter life expectancy.

Now, Reid's daughter Wendy is battling the same diagnosis, aged 57.

Reid, pictured in the middle, is the shortest All Black in history at five feet, two inches. Photo / Supplied

The disease can cause difficulty with motivation, planning and organising, controlling emotions, speaking and understanding language.

As the End of Life Choice Bill heads back into debate on Wednesday, Wendy is angry dementia patients aren't likely to meet the criteria for voluntary euthanasia. She has been living in Australia for 30 years and had planned to move back to New Zealand if the bill went through.

Alan Reid was the 1957 captain of the All Blacks. Photo / Herald File

She has the same type of dementia suffered by former All Black flanker Graham Williams, who also had motor neurone disease, and former wing and National Party MP Tony Steel. Both died last year. The Herald revealed in 2016 that they were among four former All Blacks in the 1967 touring squad to Canada, Britain and France who were known to be suffering, or have suffered, dementia. The others were Mac Herewini, who died five years ago, and Waka Nathan, who lives in a dementia home in Hamilton.

We also revealed the plight of the 1964 Taranaki Ranfurly Shield team, where five players had either died with or were suffering from dementia conditions. Their families attribute their conditions to concussions suffered during their playing days.

Their stories were a continuation of a Herald investigation into the potential links between concussion suffered in rugby and dementia.

Reid was injured many times during his career, his daughter says. Photo / Herald File

Reid's daughter remembers her father talking about injuries suffered during his playing days, including a broken jaw. She doesn't know whether there is a link between those and his dementia and it is known that about 40 per cent of people with the disease have a family history of early onset dementia, according to Dementia New Zealand.

New Zealand has about 70,000 people with dementia, a number set to triple by
2050. Between 10 and 15 per cent of those are likely to have frontotemporal dementia, according to Alzheimer's New Zealand.

With the help of one of Wendy's closest friends, Wendy spoke to the Herald on Sunday about why she wants the right to die.

It started about 18 months ago. Some things you can put down to old age, we all forget things when we walk into a room. But I would look at an object and not know what I was looking at. Things that were not normal.

Reid played for the All Blacks and for Waikato. Photo / Herald File

So I went and had tests and they diagnosed me with frontotemporal dementia. They said "You've got about two years to live, five if you are lucky".

My first reaction was "Oh f***". But when you know something is wrong, and you spend months not knowing what that is, you are just grateful for an answer. The unknown is worse than the known.

I've done some huge life-altering things. I downscaled work. I run a professional dog-grooming company called The Dog Shed and as well, train students for about three weeks at a time. I've had to give up the training aspect which has meant loss of income.

Reid is a dog groomer. Photo / Supplied

I've got a five acre property south of Perth in Mandurah, and I've been selling off big things I don't need. I've got six dogs and three horses. I had eighteen dogs before.

What happens is you go along on an even keel and then you have a drop, it's like an overnight drop. Everyone declines, gets old, and then dies, but with dementia you go along and have big drop overnight... you plough along until the next drop.

But I'm going to keep showjumping for as long as i can. I still know how to do that. I'm still doing alright, however, I can no longer concentrate on how I ride the course, all my time is spent on remembering the course only. I don't dare think of anything else. If I have a successful outcome it is only due to experience and luck. I think I have a bit of a reputation for "losing her course again". Many people on the showjumping circuit don't know yet that I have a problem.

I suffered a head injury in 2015 from a bad fall off a horse while out competing. I was - and still am hoping a little - that this is the cause of my problem, hence I am hoping it won't get worse. I've had every test available.

Wendy Reid suffers from dementia, age 57. Photo / Supplied

I haven't lost the ability to read, but I don't remember what I've read.

A client will come in, he will say something, I'll completely forget what he said. I can't answer and they can tell something is wrong.

My friend does all the accounting as it's impossible for me to do anything like that. It's frustrating. I went and put the mop in the fridge the other day as I think that's where it belongs.

I know how to do all the old things I learned when I was young, like driving, although i get lost. The older and bigger the thing, you remember. I remember things from my early 20s.

But it affects everything really. Reading a recipe - that would be tough work. I read the first couple of lines, get to the next lines and then I've forgotten the first.

I've got lots of good friends around me, I've got a bloke who keeps an eye on me. It don't like to call him a carer, but that's what he is. I'm not entitled to government help but the man lives with me here and helps with cooking, cleaning, anything. No matter how basic it is.

Reid enjoys showjumping. Photo / Supplied

I lost my taste and smell buds through my accident also. It adds another difficulty to every day living. And for some reason I don't suffer hunger pains, so eating is now a chore which I'm not very good at carrying out. Robert, the carer, nags me on.

I grew up in Morrinsville and moved Australia when I was about 18 and I've been here for 30 years. It was the weather that kept me here. I came in May, which was paradise season.

I got into dog-grooming by accident. Mum had a poodle growing up so I used to clip him here and there.

Dad gave up the All Blacks when I was born but he kept playing for Waikato. He didn't like to be known as an All Black. I found out he was famous at school. Kids told me and I came home and asked him "Are you famous". He said "A lot of people know me". I asked him what it was like and he said "Not very good, people make opinions about you before they even know you".

Reid died at age 65. Photo / Herald File

He suffered several injuries and quite a bad head injury where his jaw was broken before half-time. However, he continued to play the rest of the match with a broken jaw. How, I don't know.

It's always been suggested there is a link between his dementia and his injuries, but again its all speculation. They just don't know enough about the brain for answers. But his injuries happened when he was young and nothing showed up until he was 56. My head injury happened at 56 and dementia showed up a few months later. It is anybody's guess.

Dad owned a menswear store in Morrinsville. The accountant picked up something was wrong as he was losing money the first year. The next year was such a big loss, the accountant phoned Mum and said "If he goes into business another year, you will be broke".

He would sell an item of clothing and not put it through the accounts. He was 56. The same age as I was. A lot of things are the same actually.

Reid with the captain of the Barbarians, Stefanus "Basie" Viviers, in 1956. Photo / Herald File

Mum and the worker held the store together for a while. Dad stayed at home but he used to get dressed for work at 2 o'clock in the morning.

The disease was relatively new back in those days but he knew something was wrong. He had a bit of pride, it's not something he wanted anyone to know.

He was still signing autographs in his later years. One lady kept knitting him a scarf every year.

He still remembered his playing days. When his mind was gone, we'd go into the basement and dig out his old scrapbooks and go through them. He had vivid details of games, who everyone was.

Reid in 1957, thought to be taken on the plane leaving for Australia 1957 tour. Photo / Herald File

He didn't drink, he didn't smoke and he was still physically fit. It was just his mind.

He lived in a dementia home in Hamilton in his later years. When he didn't remember it wasn't too bad but when he knew something was missing, that's when he was suffering.

He lived to 65. Mum lived another 20 years, into her 80s. It was really hard for her.

Dad was a strong character and had dignity until the end. I would like to have dignity in the end.

I should imagine he would have liked the right to assisted euthanasia but I can't really answer that for him. I do remember him once saying that things are at an end once you lose your mind. I agree with this as it doesn't matter how physically fit you might be, without the mind nothing works.

The Waikato rugby team of 1956. Reid was the captain and is pictured at the end of the back row, to the left.

What I envisage as my future, being in a home with no mind, is not what I want.

To learn that this new bill may exclude dementia riles me up. Why can't it be available to me?

I still understand the choice between choosing to die or choosing to live. You don't lose the basics. It's not like you become an idiot. You understand the choice. I understand other people can't understand that.

Reid, left, in action during the Springbok tour of 1956. Photo / Herald File

While I can still sign a legal document, the law allows me to, I should be able to sign one now. Even if there needs to be two people who decide "That's what Wendy wants" when I'm that far gone. Doctors could say "Yes, she's capable to understand".

You've got to get the timing right. It would be for when I really can't function anymore.

When the day comes and I forget how to ride a horse, I know I'm at the end of the road. You're stuffed.

I'd move back to New Zealand for it. I'd move anywhere. I was investigating options in Switzerland but I'm not sure what the rules are there yet.

After our conversation, I will get off the phone and I won't remember anything.

Reid with her pet pig. Photo / Supplied

'This is a very narrow bill'

Act leader David Seymour says it has "always been my intention" that only a person of sound mind can be eligible for an assisted death under his bill.

"Following feedback on the bill over the past 16 months, including from Alzheimers NZ, I plan to make the bill's provisions even more explicit that a person with dementia will not be able to access assisted dying through a living will or advanced care plan.

"It may be a great disappointment to Wendy and a number of other supporters to learn that they may be ineligible for an assisted death but the bill's provisions around mental capacity are strict to ensure protection for the vulnerable members of our society."

He says his bill is based on assisted dying legislation from Oregon and Canada and is similar to the conservative law enacted in Victoria, Australia.

Act Party leader David Seymour says his End of Life Choice Bill will not include dementia patients. Photo / Mark Mitchell

The Attorney-General stated that the bill is "tightly circumscribed" and that "there are multiple safeguards built into the process, including the stringent criteria for eligibility". These safeguards act to protect vulnerable people from accessing assisted dying laws, including those with dementia.

"Some of the strongest supporters of the End of Life Choice Bill are those who have dementia and are fearful of not knowing what the end will look like, or have loved ones with dementia, know what the end could look like, and wish to have another option. Contrary to what some opponents would have the public believe, this is a very narrow bill and would not include those with dementia."

In its submission, Alzheimers NZ labelled the bill a "weak piece of legislation with vague provisions and which is open to abuse" and said it did not support it.

Chief executive Catherine Hall tells the Herald on Sunday the organisation is concerned it does not contain sufficient protections for vulnerable people, including those with dementia.

"We are also very concerned that the while the debate has been couched in discussions about dignity, there has been no focus on what is needed to support vulnerable people and those at the end of their life so they can live their best possible lives with dignity and independence."

She says services for people living with dementia are "woefully inadequate" and individuals and families are struggling unnecessarily.

"A national dementia plan is needed. It would focus on prevention of the disease which could lower the number of people diagnosed by 10 to 20 per cent. It would include better services to support people with dementia to live at home and live for longer, as well as flexible, high-quality respite services so family carers can take a break.

"Alongside this, the plan should also build age and dementia-friendly communities to raise awareness and address stigma and discrimination and establish indicators so we can monitor progress and conduct research."

The End of Life Choice Bill

Last month, the bill passed its second reading in Parliament 70 votes to 50. Photo /

Act leader David Seymour entered it into the private member's bill ballot on October 14, 2015.

It would allow terminally ill New Zealand citizens aged 18 or older to request assisted dying, if they have less than six months to live or those with a "grievous and irremediable medical condition".

Seymour has proposed the bill only cover those who have six months to live.

Last month, it passed its second reading in Parliament 70 votes to 50. Twelve MPs changed sides between the first and second readings.

MPs will now consider a swathe of potential changes to the legislation including whether to put the final decision to a public referendum.

The debate will start on Wednesday but it could take well into next year before they get into the third and final reading. Maggie Barry has promised to lodge 120 amendments alone.