12 Days of Christmas: Helping those with MS to create a new life

MS Auckland community adviser Lesley Amos (left) enjoys a coffee with Julie Adams, who has multiple sclerosis. Photo / Greg Bowker

The Herald is profiling 12 charities awarded $8333 grants from Auckland Airport's 12 Days of Christmas programme – now in its 13th year. The $100,000 funding comes from generous travellers who donate money at the airport

For people diagnosed with a life-changing chronic disease like multiple sclerosis, doctors can only do so much. After that, it's community advisers from MS Auckland that step in to help.

Diagnosis was "an absolute shock" for Julie Adams 16 years ago.

"I knew nothing about MS. The neurologist told me there was no cure. All the other information just goes over your head because it's too much to take in," she says.

Then aged 42, the Manukau woman had to abandon her career as a private investigator. For the next six months, an MS community adviser visited her at home once a month to answer her questions, provide advice and resources.

"I just don't know what I would've done without them," Julie says.

The adviser booked a needs assessment with an occupational therapist who visited Julie's home to assess what help was needed.

"I thought I needed a handrail so I could get on the toilet safely, but they got me a frame that goes over the toilet with a higher seat which is much better. I struggled to stand to do my dishes, so they got me a high chair to sit up at the sink. They also gave me a walker – without that I wouldn't be able to go shopping because standing in a queue is so painful. The day all this stuff arrived was like Christmas!" she says.

The autoimmune disease of the central nervous system affects each person differently and is unpredictable in its course. People can lose vision or mobility and then regain it as their immune system rebuilds. A hydrotherapy group helps those getting over a relapse to get out of their wheelchair and into the pool. MS Auckland also offers workshops on topics like exercise to help strength, balance and co-ordination.

Julie says many people with MS live alone. Some friends lost their marriages and children after being diagnosed.

"I've come to terms with the fact I'll live my life alone. My goal is to stay independent for as long as I can, knowing that I can call my community advisor Lesley if I get stuck. I haven't had to so far but knowing she would come means a lot when you're on your own."

She loves the MS Auckland monthly group meetings.

"They're great for swapping tips with people who live with it. We talk about what medication we've tried because different drugs can affect people differently."

A workshop on medical cannabis attracted record attendance but not many people were able to afford it or find a doctor to prescribe it, despite it being a recognised treatment for MS in other countries, she says.

Julie says medical cannabis has made an "amazing difference" to her MS, reducing spasticity and improving appetite.

"A lot of people with MS can't be bothered eating because of a loss of their sense of taste, fatigue, painful stomach tremors and bowel problems. I can lose 5kg in a couple of days and it takes months to put it back on. I look at food now as fuel," she says.

• To donate to MS Auckland, visit https://www.msakl.org.nz/