Katherine Morris has early onset Parkinson's but gets thru with humour and sparkly high heels. Photo/John Borren
Katherine Morris has early onset Parkinson's but gets thru with humour and sparkly high heels. Photo/John Borren
Finding out you have Parkinson's disease at 32 could devastate most people but Te Puke mother-of-two Katherine Morris, now 39, has boarded 'the Parky bus' in sparkling heels. Despite her condition's chronic and progressive symptoms, she is proud of being 'a groovy shaker', lives for the now and faces her future with a savvy sense of humour and style.
"Shoe porn time!"
Katherine Morris towers in dazzlingly-high sparkling heels.
The mum-of-two glides perilously across the timber floorboards of her Te Puke bungalow.
Husband Paul's eyes show little alarm as she negotiates the steps without bending her knees. Daughter Ariane is not worried either, head burrowed in a book at the dining table.
Son Ciaran is engrossed in his computer screen. At his feet, more piles of mum's glittering stilettos.
Katherine Morris has early onset Parkinson's but gets through with humour and sparkly high heels.
The family do not flinch as Morris bounds towards the sofa at the far side of the room as though across a ballroom floor, in a series of dance-like steps, heels flaying in separate directions. She screams with laughter.
"Not many women could walk in these heels. So as long as I can, you can't call me a cripple."
In the look-at-me bling heels ("Dad buys them from a shop in Liverpool, England, and posts them here"), satin skinny jeans, shock of brunette curls and grinning eyes, the gregarious 39-year-old with the Northern English vowels would make any room she entered stand up and notice.
As a primary school teacher she is used to being the centre of attention.
"Now when I enter a room, my main focus is, can I get from one side to the other without falling on my arse?
I will be standing on one side of the room, and the more I think about walking where I need to go, the more I feel like I am going to keel over.
So if I wear massive heels, people just think - oh that lass can't walk in those silly shoes."
Rocking out some dance moves is another distraction technique.
"I launch into some Stevie Wonder, blast some moves across the room, and people don't notice anything. It works in a bar, but not so well in the supermarket."
Diagnosed at 32, at that time her neurologist told her she was one of the youngest people in New Zealand. Her son Ciaran was then just 12 months old and Ariane was 3.
She had been struggling holding Ciaran and changing his nappies but had put it down to tiredness. Then at school, leading a jump jam session, one of her students pointed to her co-ordination.
"I was holding my left arm and over compensating with the right. This boy said 'Mrs Morris, your arm is not working'."
At first doctors thought it was a pinched nerve, or carpal tunnel syndrome. When it didn't go away she had MRI scans which didn't show anything sinister. She was sent to a raft of specialists. At night she Googled.
"Because of my age, Parkinson's wasn't in anyone's minds. Dr Wikipedia convinced me it was motor neuron disease and would finish me in five years. I hugged Paul and sobbed."
Katherine Morris in her Te Puke home.
A trip to neurologist Peter Wright in Cambridge saw her doing some different tests.
"He had me sniff some lavender. Then he wanted me to do some doodles ... I thought, 'this is weird'. I have since learned that Parkinson's can make you lose sense of smell and makes your writing go spidery."
That same day Wright told her she had Parkinson's disease.
"It wasn't like you see in the movies where you crumple. I just thought 'oh that's a bit of an arse'.
Another doctor pointed out that it was better than a brain tumour. That is my kind of doctor, lay it on the line and don't fanny around with jargon."
After months of uncertainty, the diagnosis came as a relief, "The label was important. When they said Parkinson's, I thought, you know what, I will take that. I can work with that. That is not going to finish me off. That is not going to take me away from my kids."
Her husband was sitting next to her in the neurologist's office. He didn't crumple either. But later that day he was booked to be going on a jetboat ride. He cancelled it. To this day he cannot go near a jetboat.
For some years Morris hid her diagnosis from all but family and closest friends.
"The drugs hide and suppress symptoms - so I felt I should do the same. I didn't want to say the words, as once you do, you cannot take it back."
It became harder to hide. Out with a friend at an event in Taupo, where she was then living, a confrontation became a turning point.
"A guy comes over to chat and instantly I feel like he is a dick. He said, 'oh you are a bit twitchy, are you nervous? I was like, 'no, I don't have anything to be nervous about'. He wouldn't let it go, so I gave him a teacher's death stare, and said, 'actually, I have Parkinson's'."
"At the time I thought he was a knob. Now I wish I could thank him, as he was one who empowered me to 'come out'."
Seven years on from her diagnosis, Morris has "hopped on the Parky bus" and is open about her condition. Reaction from people is usually shock.
"People do not know what to say. I don't fit the mould. I am not a shuffly miserable old fellow, stinking of wee. That is the stereotype, but it is a misconception."
She refuses to get help with housework and children, even though she is entitled to.
"They told me I could get a 'Consuela'. I should because I am a domestic retard, but I wasn't brought up to have some other bugger come into my house and clean."
She also declined a disability sticker, even though "in Tauranga you're an idiot to refuse one".
Boxes, jars and packets of medicines on the kitchen counter are the only visible concession in her house to Parkinson's.
She fought "tooth and nail" to avoid putting them in a "Med Pak" separating them into days, but "there are shitloads to remember ... the blue and pink are the main ones, and Paul has me on turmeric and cinnamon and all sorts of supplements - he researches like a demon on the internet."
She lays out her pills - she calls them the "sparklies" - and explains there are so many different medicines to suppress symptoms but some bring additional issues. The shakiness often associated with Parkinson's - dyskinesia - is often a side effect of medication.
"Over medicated you turn into Mick Jagger. I lost a lot of weight at first as I never stopped moving, like a hamster on a wheel."
Another medicine she takes when her muscles become rigid. She gets stiff, exacerbated by stress, turning her "into concrete, like I am wearing a diver's suit".
It is then she can find it hard to move.
"I have to force my legs to move, tell myself I am a giant stepping over a bucket. If someone cuts in you are screwed, you need the clear space."
She carries her meds in her daughter's pink My Little Pony box. Her happy place is dancing.
"Stevie Wonder is the best pill of all. With him in my ears I work. Heels are medicinal too, they stretch my calves. If I am having a boogie in a bar, no-one knows my story - apart from the bouncers, as when I go in I show them (the) My Little Pony box and explain the pills are for Parkinson's."
Morris says the hardest part of her condition is the isolation, having moved back to Te Puke from Taupo in June, giving up work, and spending days at home while her husband is at work and the children at school.
"I've always been a talker. One day last week I didn't talk to anyone from morning after the kids left until they came home. I'm shit on my own."
Morris recently hooked up with the Parkinson's Society in Tauranga - she calls them "the Parkies", which holds a bi-monthly meeting for people with early-onset - which is classified as being under 65 but in fact has people 70 and under.
Parkinson's New Zealand classifies early onset as 60 or under. Morris jokes that this surprised her, "you can still be knackered (older) and be considered early-onset."
Katherine Morris has early onset Parkinson's but gets through with humour and sparkly high heels.
MORRIS is the youngest of the 20 people in the Tauranga early-onset group, says community educator for Bay of Plenty West, Glennis Best.
Best says this 20 is estimated to be just a third of those with early onset Parkinson's in the Bay, as the Society estimates it captures a third of people with the condition.
Best, a registered nurse in her late 60s, recently moved to the Bay from Auckland with her husband Barry, who has Parkinson's.
In the sun room of her Papamoa home wind chimes sing softly in the sea breeze while Barry quietly reads. It is no retirement for Best, who is busier than ever.
In her area, Bay of Plenty West, she monitors about 300 people in total and says it is growing, "bulging", to way more than she is scheduled to cope with, because of daily referrals from neurologists, specialists and GPs.
The early-onset group meets at night because some are still working. Best says there are more men than women in the group, which is "very academic in their achievements" including doctors, lawyers, accountants, teachers and engineers.
She says the "upper strata of professions" is often highly represented in early-onset Parkinson's.
"We don't know why people get Parkinson's. There are a number of theories." Best says the early-onset group is separate from other groups as it would be "confronting" to be amongst older people "who may be deteriorating fast in their later years".
Employment and financial concerns are often topics in the early-onset group.
"Their dreams for their futures are gone, or changing. They might have to downscale their role, change jobs or stop working all together. And for people who have held high positions - for anyone - it can be very distressing, and affects self esteem."
Another topic for people with early-onset in particular is finding the right combination of drugs and treatments.
Best knows two people - one at 45 - who have had "deep brain" stimulation, surgery in which a device is implanted in the chest and a wire inserted into the brain to electrically stimulate the areas that control movement done in Auckland.
Less than 20 "hugely vetted" people a year throughout the country receive the treatment, which can reduce the need for medications but is not a cure, says Best.
Fears about cognitive and physical decline may also be a particular issue for those diagnosed very young, but Best says the early-onset group is really positive. "We remind them it is a long, slow process - there are things they may have read or seen but we remind them that that is way out there."
Stephanie Clare, clinical leader of Parkinson's New Zealand, says the question "what is going to happen" is one she has never been asked by people with early-onset.
Clare says that while Parkinson's is often thought of as an older person's disease 1 per cent of New Zealanders over the age of 60 have Parkinson's and the average age at diagnosis is 59 - in fact about 10 per cent of the population diagnosed with Parkinson's are under the age of 40.
Tony Lawson, nurse practitioner older adult (with specialty interest in Parkinson's disease) at the Bay of Plenty District Health Board, says in the Bay of Plenty the need for neurology services is growing due to demographic ageing, and that Parkinson's disease will have a significant influence on current and future planning for aged care services in the Bay of Plenty region.
Lawson adds that the trend of older adults immigrating into the region from the "golden triangle" of Auckland and the Waikato means that the current 17 per cent per annum increase in the over 65 year-old population - the second-highest population per age cohort in New Zealand - could be projected as a higher trajectory.
He says that currently the crude prevalence rate of Parkinson's disease in the Bay of Plenty is 180 per 100,000, "Young onset of Parkinson's Disease occurs between 20-40 years of age.
Prevalence is less than 1 per 100,000 in those less than 30 years of age, gradually increasing to 100 per 100,000 over 40 years of age. Juvenile onset, below 21 years, is rare."
MORRIS agrees with Best that it would be unhelpful to be around older people with Parkinson's and stare into a mirror of how her future could look. Even in her early-onset group, she has no real peer, but says you cannot really compare yourself to others anyway.
"They call it 'boutique and unique' - you cannot look at someone who has had it for 10 years and say that is where you will be. Everyone progresses differently. Some people are shakers, some people are still."
Currently, for most of the time the drugs keep her symptoms in a box. When they do creep out - and she notices her leg dragging or gets "the wobbles", she feels awareness of the "ticking time bomb".
Her children understand she has Parkinson's.
"I feel shit that my kids have to have this as part of their life. Ari got into speech finals for her primary school, I was all set to go but felt like I was going to face-plant into ground.
One thing I will not do is embarrass my kids. If I am in their domain I am 'shabam', the best I can be. I owe it to them."
The couple are open with the children about the prognosis. Morris has a file with colourful photos of neurons, "so pretty but they mess me up", and on the wall a neat planner details each meal and appointment, along with some chores for the kids.
"The upside is, this - Parkinson's makes them better people. They have empathy, they're not judgmental. They see the world with compassion, I don't hear them laugh at people."
As for dementia, which can be one of the disease's progressions, Morris jokes about it, saying if it happens, she will put it down to her quirky nature.
"If I leave my purse on the roof of the car, at least I can blame dementia." Her diagnosis has been an insight into disability's stigma.
"Everyone has their struggle, something they are hiding, or might be what fuels them." It is only her family and a few close friends who have seen her at her worst.
"The kids see me frustrated that I cannot do simple tasks. One time they saw me just lying on the floor as I couldn't move.
Ari is the fixer - she goes and gets my medicines and water. Ciaran is the soother, he strokes my hair and says 'oh mumma you will be okay you will get better'."
Holding hope for a cure in her lifetime gives Morris hope for the future.
"People think Parkinson's is physical, (but) it is all about your state of mind. I refuse to be a victim. I hate that word suffering. I say, yes I have this. Go me."
She admits it is not always easy to remain positive, "this 'positivity sparkles shit' I spout isn't as easy as I make it sound. If being perky and funny helps others, that's cool, but ultimately I'm like this because I have to be ... call it a survival instinct." She is determined to make the best of the life she has.
"We used to have a five-year plan. Now every day I'm shuffling. Literally. Family time is precious. I tell people to get me now. Drink me in."
She does have a bucket list - of 50 things, including, wearing a couture gown, a pair of Louboutins, sleeping in a very posh hotel and making a dirty movie with her husband. Humour and dressing up are her armour.
She has spells of grief for who she was in the past. She clings to the now. She does not dwell on the future.
"Thinking about the future, that could take me to a dark place. The most I will go there is the potential of a mobility scooter. On the back of which I will have a flashing disco ball and a boom box. I will meet my future with comedy."
