Diagnosed with Multiple Sclerosis (MS) two years ago, Ocean Grover Tania Kokelj is one of more than 26,600 Australians who live with the disease.
Tania describes MS as having a daily “smorgasbord of symptoms”, which include mobility issues, fatigue, vertigo, itchy skin, limited dexterity in her right hand, just to name a few.
“I also get shooting nerve pains, but my major issue is tripping and falling,” she said.
The 54-year-old is thankful she no longer has to tackle the debilitating disease alone because there’s a National Disability Insurance Scheme (NDIS) to support her.
“I fell recently and fractured my shoulder. I’m a bit of train wreck at the moment. I’m in a sling but the great thing is I was able to adapt my NDIS plan to support my injury.
“Now I have a support worker who comes in each morning. She helps me to shower and get dressed. It’s only a temporary arrangement until my shoulder heals but it’s great to be able to draw on my NDIS plan for that additional support.”
Tania said having moved from Melbourne to the Bellarine Peninsula away from her family and friends she didn’t have the informal support a lot of other people rely on.
“I don’t have any family down here,” she said.
“I do have friends, and they have been very helpful, but they are busy with their own lives and that’s where the NDIS has kicked in.
“I’m a single mum. I’m often home alone when my daughter goes to her father’s so it’s just been such a relief for me to know I have support and I can get it when I need it.”
Tania said she likes to be as independent as possible and attempts to tackle what she can, but at times needs additional help.
“I have trouble doing things like lifting and certain household tasks,” she said.
“Hanging the washing on the line is problematic, and I haven’t got the strength or stamina to mop the floor or scrub the shower so through my NDIS plan I’ve been able to get domestic help, which has just been fantastic,” she said.
“I’ve also got funding for occupational and physio therapies and have a great team around me who all communicate with each other to make sure I’m functioning to the best of my ability and I also have social and community participation.
“I do art and ceramics classes but I must admit I do more talking than art.”
World Multiple Sclerosis Day was on May 30.
