I live with Parkinson’s

I live with Parkinson’s

Imagine being unable to change a light bulb. Imagine needing help to shower. Imagine the little things in life becoming beyond your reach.

Nearly 10,000 New Zealander’s live with Parkinson’s. So do their families, friends and co-workers.

From 1-7 November, 2010, Parkinson’s New Zealand and its 20 divisions will be marking Parkinson’s Awareness Week with a variety of events around the country, including the launch of a new online resource called “I live with Parkinson’s” which will include the personal stories of people living with Parkinson’s in New Zealand.

Every month more profiles and stories will be added, providing an insight into the challenges of living with the condition for both those with Parkinson’s, and the people who support them.

Visit www.parkinsons.org.nz to read these real life stories.

Parkinson’s affects one person in every 500, both men and women. Although it is more common later in life, people in their 20s, 30s and 40s can also develop the condition.

Parkinson’s New Zealand provides support, information and education for people with Parkinson’s, their carers, families and health professionals.

Note to the Editor: Below is one of the real life stories that can be found at www.parkinsons.org.nz
Pippa.
Pippa is 37 years old and lives on her own. She was diagnosed with a Parkinsonism condition nearly ten years ago.

Having been cared for by her mother for many years, and having especially relied on her in the two years she has been unable to drive, Pippa’s life has drastically changed since losing her mother earlier this year.

“I have help three hours a day” says Pippa “but it isn’t really enough”.

“It is hard having someone who is paid to come and take care of me. It doesn’t matter how good they are, their cooking is never as good as my mums was”.

In the past few years, Pippa’s mobility has decreased to the point where she can no longer walk and must use a wheelchair or crawl to get around. More than just impacting on her ability to do household tasks like cooking or showering, Pippa has limited opportunities to socialise and must rely on other people to help her with simple every tasks and outings.

However, even with all these challenges, Pippa has done, and continues to do some amazing things. Four years ago Pippa was amongst the very first group of people with early onset Parkinson’s to attend the now annual UPBEAT Outward Bound course. (UPBEAT is Parkinson’s New Zealand’s special interest group for people with early onset Parkinson’s) Though Pippa was at the time using two crutches to help her walk, she managed to come second in the marathon, losing out only to a partner; i.e.: someone who did not have Parkinson’s.

Even though these days Pippa struggles to write or type, she produces stunningly intricate line drawings, some of which she has sold, and large scale, vivid paintings, which express how Parkinsonism has affected her life. Pippa would love to exhibit her work, but with even the little things taking a huge amount of effort, this is a big ask.

“It is funny though, even through all these challenges, I have done some amazing things because of Parkinson’s. I have met Peter Snell, and Mohammad Ali’s daughter. I’ve been to Outward Bound. I’ve met lots of amazing people. I even got my dog because her breeders aunt had Parkinson’s.”

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