A diagnosis of multiple sclerosis often comes at a young age and professional help to navigate this difficult time can be life changing. A group of women in the Northern Territory where support is dwindling has been trying to fill the gaps but say more support's needed from all levels of government.
00:34I do have symptoms where I'm unable to walk or unable to sit or stand and that's where my husband is a big help as well.
00:43The MS Society of SA and NT recently entered voluntary administration, citing a range of financial pressures.
00:51It's still unclear what this will mean for around 90 Territorians with MS and their families who've been relying on access to specialised nurses over the phone.
01:02I do hope that they can offer us services in the future because Darwin is isolating in itself and there's not so much assistance here when it comes to MS nurses.
01:13Diagnosis can take a previously energetic young person by complete surprise, with the disease affecting people mostly between the ages of 20 and 40.
01:23I would have been about 22 at the time, partying hard like most 22 year olds, spending all my money at the Vic.
01:31Ten years later I'm using a walking frame, a few years after that I'm in the wheelchair.
01:38When Sarah received her diagnosis more than a decade ago, a nurse from the MS Society was physically located in Darwin.
01:46They came to my house, made me cups of tea, gave me advice, kind of counselled me through that whole grieving process that comes with a diagnosis like that.
01:58After Kelly's recent diagnosis, grief hit hard, but the MS nurses reached out over the phone.
02:05And helped me think about how I can explain this to my husband and to my kids.
02:11The local support group has also been a lifeline, but it depends on volunteers.
02:17We're talking about people who already live quite complicated lives, so the sustainability of the group I think is a real risk.
02:28If this group did not exist, there would be nothing for people with MS in Darwin.
02:33The group has reached out to the Northern Territory Government for support, requesting funding for a specialist nurse,
02:39with expertise in many neurological conditions.
02:43In the meantime, the MS Society says it's doing its best to maintain existing services.
02:49There are services that will be a value of men in King legs.
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