Jeramy Hope

My FND Journey

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Some of my favourite photos from the past two weeks #roadtrip #family #holidays https://www.instagram.com/p/CnEbbcNyqfA/?igshid=NGJjMDIxMWI=

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#greatoceanroad #greatoceanroad #family #howstheserenity (at Bay of Islands) https://www.instagram.com/p/CnAs0uUStKF/?igshid=NGJjMDIxMWI=

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Sunset & seal play, just beautiful #roadtrip #warrnambool #family #beach #sunset (at Stingray Bay Warrnambool) https://www.instagram.com/p/Cm_Rrl4y1bd/?igshid=NGJjMDIxMWI=

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Slowly making our way home, stopped off at #portfairy #lighthouses #roadtrip #family (at Port Fairy, Victoria) https://www.instagram.com/p/Cm_HnsPSgXh/?igshid=NGJjMDIxMWI=

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Some more pix of our #roadtrip to #victorharbor with @charlotte.ann.hope @jennahope05 & @kathrynhope79 #family #holiday (at Victor Harbor, South Australia) https://www.instagram.com/p/Cm6MfwWSBkL/?igshid=NGJjMDIxMWI=

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Some quality time with our no. 1, trying to cool down. #beachday #family #holidays #adelaide (at Semaphore Park) https://www.instagram.com/p/Cm3jmc4SYnR/?igshid=NGJjMDIxMWI=

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Nice surprise break from the highway driving #headingtoadelaide #pinklake #roadtrip #christmas2022 #family (at Murray Sunset Park- Pink lakes) https://www.instagram.com/p/CmgXZDlyIYL/?igshid=NGJjMDIxMWI=

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Went to go visit our land this morning, only a year away until there’s a house (at Austral) https://www.instagram.com/p/Clcbsk-SWbW/?igshid=NGJjMDIxMWI=

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Father Daughter Weekend #melbourne #conangray #concert #makingmemories (at Melbourne, Victoria, Australia) https://www.instagram.com/p/ClIlG7qyBB_/?igshid=NGJjMDIxMWI=

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Off to Melbourne for the weekend with Jenna #holiday #minibreak #conangray #jetstaraustralia https://www.instagram.com/p/ClHPyR9y7bK/?igshid=NGJjMDIxMWI=

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Pushed myself last night, date night with my wife, a rare treat. Caught public transport with my trusty 🩼, definitely a challenge. Even harder was navigating over 4000 people, 🧠 was in overload, and today feeling it. #worthit #timminchin #fnd #functionalneurologicaldisorder #datenight #blessed (at Sydney Opera House) https://www.instagram.com/p/Ck5CksAyu7m/?igshid=NGJjMDIxMWI=

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FND, I didn't sign up for this.

My latest blog is up, honestly it’s been a tough week. #functionalneurologicaldisorders #Chronicpain #FND #Rehabilitation #Pain #Rehab #NDIS #Disability #Neurologicaldisorder

I have been struggling this week! I’ve started the journey this month of collating evidence of my permanent disability. I have found this confronting, and honestly has lowered my mood. Having to ask health professionals to test and prod, explain my FND symptoms has caused me to reflect back on my flare-ups. I’ve dug up 7 years of notes talking to my pain, leg tremors, weird unexplained symptoms.…

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My FND NDIS Journey Begins

I'm spent this weekend and it's only just began. My latest blog is up. #functionalneurologicaldisorder #chronicillness #itshardsometimes #chronicpain #life #soretoday #fnd #ndis #family #buildingateam

The single most challenging thing I have needed to do on this seven-year journey with a functional neurological disorder (FND) is formalising the diagnosis. Formalising the diagnosis requires me to be honest with myself. Meaning I can no longer mask or hide from my unusual walk (FND gait disorder) and other unusual symptoms. As a fiercely independent person who spends the majority of my time, I…

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Learning to Pace

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The Story So Far

The Story So Far #functionalneurologicaldisorder #FND #rarediseaseawareness #chronicpain #neurological #chronicillness #Family

Often I refer to myself as someone in their 40s with a body of a 75year old. Since my 20s, I’ve been in pain and had some form of treatment to remedy it, with only small periods of respite over the past 22 years. HOW IT BEGAN It all started as an AIN in a nursing home; I was showering someone, and unfortunately, they passed away; I went against the manual handling policy, and unknowing they had…

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When Life Gives You Lemons.

My latest blog is up - ‘When life gives you lemons' #functionalnecrologicaldisorder #chronicpain #FND #Rehab #therapy #newnormal #lemons #autism

It’s been a rough two weeks 🥹 Since Kathryn and I were married nearly 24 years ago, life has had challenges. Four kids before we were both 27 years old, an interstate move, significant financial loss, and multiple personal and career firsts and failures while dealing with our childhood trauma. Trying to navigate what our natural supports needed to look like for our growing Family. It felt like…

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The New Normal

I’ve been home six days. I’m extremely ecstatic being home with my wife and kids; words can’t express the joy🥰. I’ve started building a new routine at home. I was trying to get back on the cooking roster and ‘light’ house cleaning. I went for a drive, and saw extended family; I even managed a day in the office yesterday, however FND is a killer in relation to fatigue. The Story So Far Need to…

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