Local Focus: Woman's life upturned by rare disorder

"I want to be myself again. I'm scared I won't ever be that same person."

Earlier this year loving wife, mother, grandmother of seven and inspirational marching coach, Penny Gatenby had just finished her regular marching practice when her life was turned upside down.

"We all go for a coffee afterwards, so I went to that," she said. "I was sitting there drinking and all of a sudden I got these electric shocks, just going down my arms. I thought that was painful but I just carried on having my coffee. They just kept coming, and then I looked down and saw my hands were bright red, itchy and puffy.

"I walked in [to A&E] and within three hours I was paralysed."

After several misdiagnoses, Penny was told by doctors she had Guillain–Barré Syndrome.

"GBS is a rare auto-immune disease that affects the peripheral nervous system," says physiotherapist Eilidh McGillivray. "We are not sure what causes GBS. It is a rare disease that affects just 1 in 100,000 people. We just know the immune system, which normally fights infection, attacks the sheath around the nerves and actually causes the weakness in the system."

Penny says the staff at Whakatane Hospital have been her biggest support.

"I'm just so grateful I met them. Especially Eilidh and Kim. They really have done wonders for me. I didn't like other people helping me, showering or toileting me. I kept thinking, I'm only 54, this should not be happening."

As an occupational therapist, Kim Parnell's job is to enable Penny to participate in activities that are meaningful to her.

"We are working in her home environment," said Kim. "Doing things that are important to her in the kitchen, hanging out the washing, going up the steps that she has to go up and down each day."

Penny is now relearning the most basic of tasks from scratch.

"Even to hold a knife and fork, I struggle. To cut things. I am trying to learn all of that again. Yeah, I just get scared. I just have lots of thoughts going through my mind. I have a lot of down days. I wish I had more good days than down days."

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