Guillain-Barre Syndrome sufferer Jackson Lee ticking off goals

Guillain-Barre Syndrome sufferer Jackson Lee with his partner Kam West. Photo / File

If you're Jackson Lee, a lot can happen in a fortnight

Since the Rotorua Daily Post revealed the paralysed half Tongan, half European's battle with Guillain-Barre Syndrome (GBS), he's regained slightly more feeling in his limbs and, thanks to his dedicated physio team, had a taste of being upright, albeit strapped to apparatus in Rotorua Hospital gym.

The first time wasn't a pleasant experience. Lying prone since July 27 he found gravity's force too much to cope with and became nauseous, but that's improving.

He now has sufficient movement to press the buzzer lying beside him with his chin but remains unable to hold a knife, fork or spoon.

He acknowledges it's "humbling", being fed like an infant, but with so many other road-to-recovery steps already conquered, he's confident it's another "taken for granted" life skill that will return.

A list of self-imposed goals is pinned to his wall, some already ticked off.

He remains confident he'll be able to walk out of the hospital on his 28th birthday, March 24.

If not, so be it.

Meanwhile, Lee and his partner, Kam West, have been "bowled over" by the response his story's generated from those who read of his GBS battle, either on the front page devoted to it, online or from the swathe of social media comment it generated around the globe.

Others who've suffered from the autoimmune disorder that attacks the nervous system have been in touch, and two local victims, former councillor Rosemary Michie and real estate agent Paul Farrell, visit regularly.

"I really really appreciate that, to be able to share our experiences and see and hear how they've pulled through means a huge amount to me."

The partner of a Dunedin man who's at the same recovery stage as Lee has contacted West. Like him, he was put into an induced coma and ventilated. The women are keeping in touch, comparing notes on their partners' progress.

The eye-activated computer the TalkLink Trust's provided him with has been a godsend replying to well-wishers and supporters.

Lee has a special thank you for a woman he knows only as a "Christian lady from Tauranga" who presented him with a $200 voucher to buy shoes to walk out into the world in, a gesture he and West are embarrassed by.

"We didn't tell our story looking for charity but to make people aware that this terrible thing exists, but it's wonderful that a total stranger can be so moved by Jackson's plight she's done this," West said.

Lee's unsure whether he'll be able to participate in the rally local woman Stallone Edmonds-Tepania has organised to raise GBS awareness.

He's going to have to wait and see if his medical team decree him up to it.

Waiting and seeing is something he's become accustomed to in the almost six months he's been bed-bound.

"But at long last I really do seem to be making progress on an almost daily basis, the amazing people looking after me are making sure of that."