Gary making the most of each day
MND patient keeps a positive outlook
Motor neurone disease (MND) is the name for a group of degenerative nerve conditions that can affect anyone without warning and usually results in death within two to four years.
It is a cruel disease that causes damage to the motor neurons, the nerve cells that control the muscles, and leads to muscle wasting and weakness. It affects mostly those aged 50 to 70 and slightly more men than women.
In New Zealand about 400 people live with MND and two people die each week. There is no cure and no treatment.
One of those living with MND is Gary Boys, of Te Awamutu, and although he has exceeded the twoto-four-year expectancy, he fully understands he is living on borrowed time.
Boys is determined to make the most of his remaining time and remain positive about everything that has been, and still is, good about his life.
One of the good aspects is the care he is receiving from Waikato Hospital and specifically neurology nurse specialist Ruth Mylchreest, who is also a local.
Mylchreest provides care and support for people living with MND and another rare neurodegenerative disease, Huntington’s disease.
She is in training for the Kakepuku 10 Challenge, the name she has given to the event to raise awareness and funds for people affected by MND and Huntington’s disease in the Waikato.
Boys describes what Mylchreest is doing as “way beyond the call of duty”.
“She is fantastic,” he says. “Ruth is so caring, so supportive and so reassuring.”
He says her work through the hospital and what Motor Neurone Disease New Zealand (MND NZ) does to support people living with MND is incredible.
“I’m inspired to share my experience to support Ruth and the challenge she has taken on,” he says.
“I hope people get behind her and give a little or a lot.”
Boys first noticed physical changes in late 2017 when he experienced a loss of strength in his left arm and a loss of grip in his left hand.
This was accompanied by occasional tremors, so he made an appointment with his GP.
His GP was concerned it was Parkinson’s disease, but this was eliminated.
“That was a relief at the time,” says Boys, “but we still didn’t know what it was.”
A series of tests followed, including MRI and CT scans, but nothing alarming came to light.
Boys was monitored every six months for two and a half years following the tests when the possibility of MND was raised.
It was now January 2020. Boys had no idea what MND was, so he went to the internet.
“When I read about it, I remember saying out loud ‘ Oh no. Please no’.”
A petrolhead all his life, Boys describes it as having a good motor, but the clutch is slipping.
Boys and his partner, Lesley Day, went together to the neurologist when the bad news was confirmed.
She asked the question, “What next.” and the neurologist said he didn’t honestly know because it is different for everyone.
But he did say it would eventually prove fatal and most lived for between a year and three years, with only 5 per cent surviving more than five years.
“For the next few weeks, we didn’t know what to do next,” says Boys.
“That is when MND NZ suggested they come into our world and help us navigate forward.”
“We had no idea how the system worked, so it was a blessing.”
MND NZ helps those diagnosed with the terminal illness to work with the system to get the help, support and assistance they need.
Boys says they listen, they answer questions, they advise, they act as gobetweens, and they understand.
Big decisions had to be made, and the first was about his employment.
Boys was employed by Waipā District Council as a building consent manager.
“I loved my job, but I was getting fatigued, and I even had issues using a keyboard. I knew I couldn’t give 100 per cent so the decision was made to retire a couple of years before I had planned.
“I needed to be fair to my employer and I needed to make the best of what time I had left.”
In October 2020, the couple did a road trip through the South Island while he could still manage.
His mobility deteriorated quickly, so he had to give up on some of the real passions in his life.
One was fishing — and the boat was put on the market and sold.
The other was driving — a huge blow to someone who loved cars and had driven competitively.
“I could still drive, but for the safety of everyone on the road I made the call to quit as I had lost confidence,” he says.
“Over the past three years, I have lost about 90 per cent of the strength in my arms and legs.”
Now Boys says he only gets to drive his electric hot rod — his electric wheelchair.
He says being diagnosed with a terminal illness affects everyone around you, not just yourself, so you can’t be selfish and dwell on it or feel sorry for yourself.
He says he wants to make the most of his time with Lesley and his kids and other family and his friends while he can still talk and have a laugh and share stories.
“Laughter is especially important,” he says.
“It isn’t just the best medicine, for me it is the only medicine.”
He also appreciates all the professional and volunteer help more than he can say.
“I am getting helped by the best people, I get the best medicine and I’m getting the best equipment.
“Our system for helping me is fantastic.”
Boys makes the point that the most important person in his life is Lesley.
“Without her, I wouldn’t be able to stay at home and there is no place like home.”
Boys adds that he naturally gets frustrated and angry — but it doesn’t help.
“It’s like spilling the paint — getting angry doesn’t get it back in the tin.”
“I just try and think about everything I have to be thankful for and make the best of every day, just like we all should.”