Motor Neurone Disease awareness month: Jamielyn's Story
Published 29 June 2022
Over time, dealing with the changes caused by MND, Jamielyn felt her priorities in life quickly align. She wanted to be the best mum possible despite her condition, reconnect with her parents and her culture and shape her own destiny.
When Jamielyn first met Cammy, one of our connector case managers, her biggest concern was how her condition will impact on her family. She emphasised that she wanted as much household and personal care as possible, so she could still be mum to her two children as her illness progress.
Today, Jamielyn relies on care from her elderly parents. The progressive nature of the condition means she requires increasing assistance and agility from her carers, specialists and providers.
Jamielyn is determined to shape her own destiny as much as she can. She has asked for additional support workers who can talk to her and her family in their first language, home modifications so she can access the bathroom easily and equipment so her parents can help her get up safely.
It’s important that everyone providing support to Jamielyn and the family work together. It's one of the reasons we make sure we have a presence at the MND network meetings—a collaborative network of specialist services supporting people with MND and their families.
A network of experts who care
Established in 2007, the network meetings bring the specialist services for people with MND together on a regular basis. Invited are the MND Clinic doctors, members of the Palliative Care teams, TalkLink and Mobility Solutions, the therapists and nurses from the Allied Health teams, representatives from the hospital and community Palliative Care teams and the MND New Zealand Support Advisors.
“There are many things we can do now to make the situation better for people with MND compared to 10 or 20 years ago,” says Linda Oliver, Support Advisor at MND New Zealand.
“Taikura Trust plays a part in helping make life better for the people we support,” she adds. “The ability to respond quickly to the changing needs of the individual and the family is absolutely essential.”
Cammy shares what happens at the meetings: “We talk about everything that’s important to the individual and their loved ones. Like when a person needs new equipment to lift their quality of life, or when carers feel burnt out and want respite so they can take a break. It’s also empowering to see how all the strands of support come together and make a difference to people’s lives.”
Jamielyn and other people with very high and complex needs appreciate having one person to work with from Taikura.
“People with degenerative conditions can experience some of the most trying of circumstances and have needs that constantly change. It’s hard for people to build trust when they feel so let down by the unexpected,” says Cammy.
“I think I’ve earned Jamielyn's trust because I’m always there for her and her family. I’m really glad our work culture and values enable us to support people and families in a way that matters to them.”
With 20 years of disability experience, our skills, knowledge and family-centred approach are sought out and relied upon by a range of services across the region. We have high levels of trust and satisfaction among the people we support and believe working directly with individuals—person by person, family by family—is the key to empowering people to lead the life they want.
If you are working with a group of people who need support to navigate services in their community, we can help establish key links so people get the right supports they need at the right time. Contact us at firstname.lastname@example.org.