Jeramy’s FND Journey

Tag: Gait Disorder

  • DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    I don’t accept gaining support from the government (NDIS) as a victory or something to celebrate. We need to change the perspective; people with disabilities shouldn’t need to fight and live their worst lives before support is possible. People with disabilities should have access to support. We need to change our perspective from the NDIS…

  • NDIS Take 4

    NDIS Take 4

    I got emotive at the NDIS hearing, explaining all the work I had done over the 12 months prior, the reports, the specialists consults, the thousands upon thousands of dollars spent on reports, working with a specialist OT going line by line over the NDIS access guidelines.  I’m still not being heard!!

  • Loss; Coming to Terms with a Permanent Disability.

    Loss; Coming to Terms with a Permanent Disability.

    If I’m being honest, I’ve been quiet these past few months (on social, blogs, and talking about progress, or lack thereof). Writing has been too hard because life’s been hard.

  • NDIS Knock Back No. 2

    NDIS Knock Back No. 2

    I have been working on my NDIS application since August 2022, with nearly six months of evidence collection, specialist appointments, and storytelling. Rejected. #fnd #fndawareness #fndwarrior #fndaware #withfnd #chronicillness #disability #functionalneaurilogicaldisorder #functionalneurologicaldisorderawareness #functionalneurologicalsymptomdisorder #functionalneurology #NDIS

  • Disability Support Declined

    Disability Support Declined

    In my previous blog, I wrote about the fact my disability is permanent. My current state is my new normal. The ironic thing is that the NDIS declined my application due to their opinion of my disability not being permanent or, in NDIS language, ‘fully treated’. This is despite having letters confirming my disability from…

  • My Disability is permanent. My current state is the new normal.

    My Disability is permanent. My current state is the new normal.

    This doesn’t feel like a completion or a success. Yes since hospital admission I have progressed from a standing frame, wheelie walker to crutches. But then we have a full stop. I have arrived at my new normal. I’m struggling to be ok with this.

  • The Story So Far

    The Story So Far

    I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain,…

  • When Life Gives You Lemons.

    When Life Gives You Lemons.

    Balancing ‘normal’ family life, work, and the day-to-day hiccups we call life together has always been challenging. So adding a functional neurological condition, compounded with chronic pain, was not a welcomed bedfellow. While working through my new normal, we have needed to concurrently navigate some significant medical concerns with one of my daughters. Jenna has Autism, making planning…

  • The New Normal

    The New Normal

    My doctors think I am pushing harder than others with similar conditions. I’m convinced that I need to do more, and my family are providing the balance.

  • Juggling Medications

    Juggling Medications

    Every three months I see my pain specialist at Sydney Spine & Pain for a review, check on the stimulator and an open discussion on the reduction of my pain medication. We discuss the decrease in my pain patch, whether to juggle the medicines for neuropathic pain and mapped my pain levels since we last…