Tania Kokelj is one of 26,600 Australians who lives with Multiple Sclerosis (MS) and says she no longer has to tackle it alone because there’s an NDIS to support her.
Diagnosed two years ago, the 54-year-old said MS affects the central nervous system, interfering with nerves in the brain, spinal cord and eyes.
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.
“I fell recently and fractured my shoulder but thankfully I was able to adapt my NDIS plan to support my injury.
“Now I have a support worker who comes each morning to help me shower and dress.
“It’s only a temporary arrangement until my shoulder heals but it’s great to be able adapt my plan for additional support.”
Tania said she moved from Melbourne to Ocean Grove, away from her family and friends, so she couldn’t rely on any informal supports.
“I don’t have any family down here,” she said. “I do have friends. They have been very helpful, but they are busy with their own lives. That’s where the NDIS kicked in.
“I’m a single mum. I’m often home alone when my daughter goes to her father’s so it’s been such a relief to know I have support and I can get it when I need it.”
Tania said while she does like to maintain her independence and tackles what she can, there are times she does need additional help.
“Household tasks are difficult,” she said. “I have trouble hanging washing and I don’t have the strength to mop or scrub so now I get domestic help through the NDIS, which is great.
“I also have funding for occupational and physio therapies. I have a solid team around me who all communicate with each other to make sure I’m functioning to the best of my ability.
“I also have social and community participation in my plan, so I’ve chosen to do art and ceramics classes but I do more talking than art,” Tania said with a laugh.
I also have a support worker who takes me out. It’s great because I can’t drive anywhere at the moment.”
Tania said as a parent with MS she never wanted to burden 14-year-old daughter with caring responsibilities.
“She’s a teenager. While she is a great support I want her to enjoy her teenagehood and not have to worry about me,” she said.
“That’s why I was so happy I could make one of my NDIS goals, ‘To maintain my relationships with my child, my friends and my family’.
“I want to be a parent to my child and for me it means giving her freedom to pursue her dreams too.”