Kevin Sargeant was diagnosed with multiple sclerosis (MS) last year. He first noticed something was wrong seven years ago, but it was only after a bad fall that he was finally diagnosed.
Cat Jones, MS Society Gisborne East Coast (MSSGEC) Field Officer, says MS is hard to diagnose because there are such a wide range of symptoms and everyone is affected differently.
“A lot of MS goes undiagnosed and many people don’t actually know what it is. Some people think it’s contagious and take a step back from the person and that is awful for them. This disease can frighten people as it can seriously affect speech and mobility.”
MS is an auto-immune disease where the immune system mistakenly attacks parts of the body that are vital to everyday function. Symptoms are unpredictable and can vary in intensity. While some people experience fatigue and numbness, severe cases of MS can cause paralysis, vision loss, and diminished brain function.
Kevin’s speech and mobility are affected and he ended up in a wheelchair. He says depression has been huge as a result of his MS, especially when he lost his mobility.
“It was terrible when they told me I would never walk again, that really hurt, to know that I would never surf or run again, and I would have to rely on people to push me in my chair.”
Kevin now has a mobility scooter, which he had to buy for himself, and after the battery went flat during Covid he knows firsthand that he wouldn’t want to be without it.
“When I start getting a bit depressed I go out on my scooter, go and see my neighbours and friends, I just need to get out.”
Kevin has been a member of MSSGEC for a year after attending one of their regular morning teas. Initially he “was a bit iffy about it” and didn’t want to go, but he plucked up the courage and went anyway.
“I turned up that first morning and parked in the corner by myself, in no time at all I had eight people come and sit with me. I had a great time and that really got the ball rolling for me. Everyone was so friendly and there was lots of laughing.
MSSGEC provides a wide range of services which include arranging social networking opportunities, one on one support, referrals to agencies and attending specialist appointments with members.
Judy Livingston, MSSGEC Secretary, says depression is a factor for many of their members and sharing information between each other helps with that.
“Introducing our members to each other, so they can support each other, is vital. Everyone is only a phone call away, and they are all very supportive of each other.”
Cat added that “MS can be quite a debilitating disease and there aren’t the same wrap around services as for some of the more prevalent diseases. That’s why it is important for us to ensure our members have access to agencies and services they may not be aware of.”
MSSGEC is Gisborne based and all of the Executive are local. One of the Executive must have MS and another be a carer, so there is knowledge at the governance level of what members and their whanau are going through. The Executive established a fund at Sunrise to build sustainability for the future. Judy says that a recent reduction on what was already a tiny government contract has made it clear government funding can’t be relied on.
“Our member demographic is small compared to the size of our region which has seen quite a lot of our funding go back to Auckland. We’re hoping our fund at Sunrise will grow to become a reliable source of income to ensure we can carry on the important work we do for our members.”