Keen hunter and fisherman felled by neurological disorder

Gisborne man Josh Grant has endured a 20-month ordeal that started with pins and needles in one of his feet and ended in a wheelchair after eventually being diagnosed with the neurological condition transverse myelitis. Josh and his family spoke with Local Focus journalist Renae Lolohea.

In August 2021, 23-year-old diesel mechanic Josh was experiencing pins and needles in his foot and went to his GP.

It was thought it might be a pinched nerve and Josh’s back was strapped.

But by the evening the pins and needles and numbness had spread to his other leg, then up to his chest, and it was decided he should go to Gisborne Hospital’s emergency department.

Josh had no idea what was happening to him.

His leg had gone completely numb and he couldn’t move it, he said. It progressed from the bottom of his spinal cord and worked its way up.

“The paralysis just continued to travel up my body. I couldn’t move my arms . . . I couldn’t move anything really, except my facial muscles and head and neck.”

Josh was airlifted to Waikato Hospital on August 18, 2021 after a lesion was found on his spinal cord.

It was the day after Prime Minister Jacinda Ardern announced the country was returning to Covid-19 Alert Level 4 (lockdown), meaning Josh had to go alone.

“When you go through losing the ability to walk and doing that on your own in a little (hospital) room by yourself — it was very, very tough,” he said.

It was seven days before his parents Karen and Darryl Grant were granted a Covid-19 exemption to travel to Hamilton.

“It’s unfair that he went through that on his own,” Karen said. “The first week was when Josh lost pretty much his body and he went through it on his own.”

“She was really stressing,” Darryl said. “But I was like, they’ll be all right, he’s in the hospital, he’ll be fine. They’ll sort it out and give him some meds and he’ll be on his way . . . but every time we’d ring him up, the news would get worse and worse.”

When they were finally able to travel to Hamilton, Karen and Darryl arrived to find they were not allowed into the hospital due to Covid restrictions.

Eventually, Darryl was granted entry in a caregiver role.

Karen returned to Gisborne to work over the weekdays and made the five-hour trip back to Hamilton at weekends.

“I still wasn’t allowed to go in.”

Josh marked his 24th birthday in hospital with his father.

Desperate to have time with her son on his birthday, Karen got to speak with him over a brick wall.

“There was a little garden that Daryl could take him into and I could chat to him over the wall for a few minutes.”

As doctors continued to look for answers, Josh underwent plasma exchange four times and was told his condition was life-threatening.

“They basically drain blood out of your body and replace it with good plasma,” Darryl said.

“He’s probably had two Panadols a year before this . . . next thing he’s getting this tube stuck through his neck right down into his heart, and the specialist says, ‘whatever you do, don’t move otherwise you will probably die’.”

Josh finally received the diagnosis that he had transverse myelitis — a neurological disorder caused by inflammation in the spinal cord.

Medication started to work about three to four weeks after he was admitted and he began to stabilise. He got feeling back to C7 of his spine.

“I got the use of my arms back,” Josh said. “They’re still weak but they work. I can feed myself and stuff, which I’m grateful for.”

Josh was moved into recovery but his medical journey was far from over.

“A young nurse rings us up and says ‘you might want to come down’,” Darryl said. “‘Josh is having problems breathing’.”

The nurse was in tears when they arrived. Josh had had an allergic reaction to penicillin, gone into anaphylactic shock and had a cardiac arrest.

“He actually died there for a bit but he came back,” said an emotional Darryl. “Yeah, it was pretty hard.”

The day after Josh’s birthday, he was moved to the Auckland Spinal Rehabilitation Unit in Ōtara.

His family requested a transfer to Burwood Hospital in Christchurch, where there were no Covid-19 infections reported and they could be with their son.

“We were told that the Gisborne region comes under Auckland, so we had to accept that,” Karen said. “When Josh went to the spinal unit, once again he was there on his own and we were locked out (due to continued Covid restrictions),” Karen said.

The family were not allowed to visit him again until mid-December.

Josh returned to Gisborne Hospital on January 27, 2022, and went home on February 18.

Financial concerns have added to the hurdles.

Josh was originally covered by ACC as he thought he had injured his back at work, so ACC covered his wages for two months.

But on being diagnosed with transverse myelitis, he was no longer eligible for ACC. Instead he was covered by the Ministry of Health but there was a huge discrepancy between amounts.

Josh was wheelchair-bound and the family had to pay for modifications to make their home wheelchair-friendly.

The front door is not accessible for wheelchair users so they had to concrete the driveway to the back door.

The costs were not covered by the Ministry of Health although it did approve funding for a replacement back door, which the family are still waiting on to be installed.

Under ACC, Josh would have had 24-hour care. Instead he gets six hours a day which is broken up.

“It’s a bloody kick in the teeth,” Josh said. “You see a lot of other people who have injuries instead of illnesses, and their injuries are alcohol-related or something like that . . . and they’re better off in terms of funding and support through ACC.”

Friends started a Givealittle page to help Josh buy a van so he could get out into the community and to appointments.

His extended family also chipped in to buy the keen fisherman and hunter a fishing drone.

Cousin Alana Reed, who is a social worker, secured Lotteries NZ funding to motorise his wheelchair.

Josh has started doing administration work for a family friend a few hours a week.

He is also working with a physiotherapist to get stronger as he looks to gain more independence.

“It’s been tough but it’s made us quite close,” Karen said. “It’s a bit of a journey and we just try to take it one day at a time.

“Watching my son go through this has been really hard — just watching his every-day struggles.

“I just want him to have a good life.”