Welcome to our real life stories page. Over 10,000 New Zealanders have Parkinson's but many thousands more are affected and also live with Parkinson's every day, Whanau, carers, friends and health professionals.
Pippa, Kathleen, John, Margaret and Diane have generously shared their stories with us.
Pippa was diagnosed with Parkinson’s when she was 25 years old.
“I look at Parkinson’s as a challenge,” says Pippa. “But it has also been a problem. I can’t drive anymore. I had to decide to stop driving when one day, as I was driving on a roundabout, my leg just decided it wasn’t in the mood and froze.”
Pippa’s mobility has decreased in the past few years. Now she uses a wheel chair or mobility scooter to get around. “Parkinson’s teaches me patience, something I didn’t have a lot of when I was younger. Your brain doesn’t know you are disabled, so I have to remind myself before I do anything that I am disabled. Every time I want to move I have to think up a strategy of how I am going to make the movement. ”
“I feel Parkinson’s has also brought me opportunities I wouldn’t have had otherwise.” Pippa was amongst the very first group of people with early onset Parkinson’s to attend the now annual UPBEAT Outward Bound course. “I’d have never gone to Outward Bound if I didn’t have Parkinson’s” says Pippa. “I completed the course, I even won the marathon.” Parkinson’s has also meant that Pippa had the opportunity to meet Sir Peter Snell and Muhammad Ali’s daughter. “I jokingly told my Mum after meeting and shaking hands with Sir Peter that I wasn’t going to wash my hand for a week!”
Pippa lives on her own and is fortunate to have the support of family and friends. She can no longer take her dog Skufi for walks so a neighbour, who she used to go on dog walks with, picks her up in the morning. “Skufi is a great companion, but it would be difficult to give her the walks she needs by myself” she says. “Because John takes her for walks and has her round to his place to play with his dog I know Skufi is getting plenty of exercise and play time.”
Although Pippa now struggles to write or type, she produces large scale vivid paintings which express how she feels about Parkinson’s, “I’m a quiet person usually, but when it comes to my art I shout.” Pippa also produces stunningly intricate line drawings. “All the lines start out as straight lines and get warped by my tremor. Parkinson’s creates the art but it can ruin it too.” She would love to exhibit her work and has already sold some of her art.
“I remember the day my doctor told me I had Parkinson’s very clearly. I was standing outside the Hospital in the pouring rain – I don’t know which made me wetter, the tears or the rain!” Kathleen’s husband was waiting outside the Hospital for her and all she could say was “I’ve got Parkinson’s”.
Taking a positive approach to her diagnosis, Kathleen adopted healthy living, regular exercise and positive thinking. She joined the Parkinson’s Society, went to their meetings and physiotherapy services and found out as much as she could about the condition. The one thing she doesn’t feel she has found yet is emotional support.
“I think it is very important to look at the whole person and to be sensitive to their feelings about the losses they may be experiencing. For me it was the loss of being able to china paint, play the piano, sing and travel.” Kathleen finds how soft her voice has become a source of frustration. “I used to sing with the choir and that is the thing I miss the most.”
Kathleen has adapted her life in other ways. “Luckily it has not affected my ability to drive my car. I have to use two hands to lift pots off and on the stove and I am very careful when using hot oven trays. The other area of my life which has been affected is lack of sleep. Over the past 13 years the tremors have got stronger, especially just before my medication is due. I am also stiffer in the mornings and cannot walk long distances.”
“I don’t tell people about my condition because they seem to treat you differently once they know.” Kathleen finds the tremor, mainly in her left hand, the most worrying thing. “Thank goodness I am right handed. I am active in many clubs and find it much worse when I am running meetings. I have found various ways of disguising this. I put my hand in my pocket a lot and I rest my notes and papers on a lectern when possible.”
After a number of falls, Kathleen has learnt to be very careful and take things much slower than she ever did in the past. “And I have learnt to only ever ask for half a cup of coffee please when going out for refreshments!”
John and Margaret
John is in his 70s and has been living with Parkinson’s for more than five years. So has his wife, Margaret.
With Margaret having cared for John since his diagnosis, the couple are now preparing to make the move into an apartment within a retirement complex.
This is one of many changes to their lifestyle that they weren’t anticipating having to make when John stopped being unable to finish a full round of golf nearly six years ago.
John’s Parkinson’s symptoms became apparent to family members when John was recovering from cancer, but at the time the lack of movement in his left side, and reduced golfing ability were the least of his worries. Once he recovered from the cancer, John’s family pushed him to investigate the changes and he was diagnosed.
“In some ways it was good to know that my slowness walking, and my lack of grip and other things like that weren’t a side effect of my cancer treatment, but in other ways it was upsetting as a diagnosis of Parkinson’s meant these things were going to stick around long after the cancer was gone” says John.
“John was always very active, loved sports, doing things around the house” added Margaret “and knowing now that he will never do some of those things is very hard”.
John is pleased that medication is currently helping control some of the more obvious physical symptoms of Parkinson’s, such as his tremor, but unfortunately simple household tasks like changing light bulbs are now impossible for both John and Margaret. “One week nine light bulbs went out and we had to have our son-in-law over three days in a row to fix them!” says Margaret.
John and Margaret are lucky that they have the support of family in Wellington, who they moved to be closer to before John’s diagnosis. However, two of their children live overseas, and flying to visit them is now beyond John. “We are lucky that we have been all sorts of places and done all sorts of things together in our 50 years of marriage,” says John. “But our plans for this part of our lives together have completely changed. I just can’t do many of the things I was hoping to enjoy at this age”.
Aside from family members, and each other, John and Margaret are supported by their local Parkinson’s New Zealand Community Educator, Diane. They see Diane about once a month, through both visits in their home, and support groups where they meet up with other people with Parkinson’s and the carers. “Diane is so amazing. She has all the right information and can give advice on medication and whatnot, as well as knowing who to call at the hospital, or where to go for equipment” says Margaret. John recently got a new, sturdier walking stick, and the occupational therapist that Diane recommended also suggested a piece of equipment to help with getting John in and out of bed. “Diane is one of those people who when she says “you can call me anytime” really means it. And we really appreciate that,” says John.
As well as seeing Diane regularly, John and Margaret also attend a Parkinson’s exercise group once a week. Both of them participate in the session because as Margaret notes “as carers, we need to keep up our strength and fitness too. You’d be amazed at how physically taxing caring for someone can be. Even just the little things like helping someone in and out of a chair can become hard work, especially as I am not in the best of health either.”
John’s Parkinson’s has certainly thrown a spanner in the works for both him and Margaret at what could have been a relaxed and fulfilling part of their lives. However, with support, they have worked hard to maintain the parts of their lifestyle that they can. Moving into a retirement community is a step that Margaret has been keen on for a while, to ease the burden on both John and herself, and John has finally decided that he is ready for them to make the move. “In the end, I just want her to know that she can go and do things, and I will be safe there, even when she is not around”.
Diane has worked for Parkinson’s New Zealand as a Community Educator for 20 years.
“You meet so many people, at different stages of their lives, who are coping with huge challenges,” says Diane.
Diane’s role includes visiting people with Parkinson’s and their carer’s in their homes, running support groups and other meetings, and organising exercise groups.
“Some people cope remarkably well living with Parkinson’s, and others don’t sadly” she says. “Parkinson’s affects every person differently, so the ways people cope vary a lot as well.”
“Some people find things like support groups really useful as a way to connect with other people and carers living with Parkinson’s, and share experiences. Other people find them to be a bit difficult, especially those who have early onset Parkinson’s or are newly diagnosed, as seeing people who are further advanced or have worse symptoms can be a pretty scary reality check. Some people like to know what they might be heading for while others really don’t.”
Diane’s clients speak warmly of the care and support that she provides to them, and it is clear that the job is a labour of love for her as well.
“Some of the hardest times have been when people I have been seeing for some years pass away, or something happens to family members. I’m very professional, but when people let you into their lives you can’t help be affected when their illness progresses, or they pass away, or their circumstances become harder”.
As a Registered Nurse, Diane is able to provide information and advice on medication, occupational and physical therapy as well as making sure that her clients see their GP or specialist when their circumstances change. The role of Parkinson’s Community Educator is unique in its combination of support and advice.
“Though the job can be hard, it is definitely rewarding as well. It is often remarkable how positive people with Parkinson’s are in the face of huge changes in their health and their lifestyle.”