What's Your Story? Written
Would you like to share your story?
Each of us has a story and our guide us through our Meniere's Disease journey.
Share these stories with family and friends to help them understand. Information for Family and Friends (Meniere’s Society UK)https://www.menieres.org.uk/information-and-support/day-to-day/information-for-family-and-friends
Meniere's - share your story
The Road to Gentamicin
Letter 1:
Baz is taking the Gentamicin road!
Baz wrote a letter to his bike group CLBG letting them know where he is at and what he plans to do. Baz will keep us updated as to how he is progressing. Let’s hope that this will get Baz back on his bike!
Letter 2:
Baz took the Gentamicin Road
A healthy diet works for Marion
Marion manages by living living a healthy organic lifestyle. With this lifestyle change, she has never looked back. This is her story.
Please remember, this is her story and it worked for her. We are all different so if you have any concerns regarding dietary changes, please see your medical practitioner.
Margaret
Fundraising for Ménière's disease Research
This is a story of motivation and support,. Margaret said:
"I began attending My Outdoor Fitness boot camp classes, held at Jubilee Park in Glebe, in September
2020. While most of those who attend are far from elite athletes we do enjoy the chance to move
our bodies and stay at least a little active. The business owner and instructor, Nick, is always
encouraging and accommodating of individual needs, which has been important for me as a
Meniere’s sufferer.
Though I’ve had to miss a few classes when attacks are bad, I try to attend at least once a week and
continuing to exercise has helped me to focus on what I can still do, rather than dwelling on all of
the things Meniere’s has taken. Sure, I can’t always do things that require a degree of balance, but
boot camp reminds me that moving my body is still possible and I am grateful that I’ve not entirely
lost that ability.
My appreciation for Nick’s support only increased when he contacted me earlier this year to say he
wanted to make the group’s mid-year get-together (he hosts a party a couple of times a year for his
clients) a fundraiser for Meniere’s research. How wonderful and what a caring and thoughtful
suggestion.
Nick contacted local businesses, some of whom are clients, and gathered together a range of prizes.
Everyone who bought a ticket to the event, a casual finger-food affair held in the clubrooms of the
Glebe Hockey Club, was entered in the raffle to win great prizes. Skincare packs, hardware vouchers
and more were won by happy attendees. Plus there was a silent auction for the two big prizes – a
dinner voucher for the Glebe Point Diner and massages from Balmain Sports Physio.
Thanks to the generosity of the group participants, the businesses that donated and the kindness of
Nick who organized the event, we raised $1800 for the Meniere’s Research Fund at Macquarie
University. While $1800 might not be a huge amount, it was great to feel as though I was part of
something that was supporting the doctors and scientists who are working to help find better tools
and treatments to diagnose and treat this horrible disease."
Kathee DeLapp - neuro physiotherapist
Kathee DeLapp is one of the few neuro- physiotherapists in Australia who work exclusively in the area of vestibular rehabilitation.
Kathee is recognised as one of Australia's most respected and knowledgeable specialists in the area. She has decades of experience in treating patients with vertigo, dizziness, and imbalance due to inner ear disorders.
Her special interests are: Vertigo, BPPV, Vestibular migraine, Neuritis, Labyrinthitis and Meniere’s disease.
Qualifications BS (Grad Diploma Physiotherapy) Neuro-Physiotherapist.
Grad Diploma, Physiotherapy University of Sydney.
BS Physical Therapy California State College.
Although Kathee does not have Meniere’s she understands vertigo. She lives with a vestibular disorder.
Kathee works at Healthy Hearing, Bondi Junction, NSW
Here is her story!
Celene McNeill- Audiologist
Food is medicine – your body is fuelled by what you eat
Celene McNeill of Healthy Hearing & Balance Care, Bondi Junction is a well known independent audiologist with a special interest in Meniere’s disease, tinnitus and other chronic auditory and vestibular disorders.
After Celene watched Laura Fisher’s webinar about managing Meniere’s through diet, Celene said “Laura brought to light my old beliefs that appropriate nutrition and lifestyle are the key to improve quality of life of those experiencing the symptoms of Meniere’s disease.”
Although Celene does not have Meniere’s disease she has other health issues which she now manages through appropriate nutrition, exercise and meditation.
Food is medicine (pdf)
DownloadRichard Rundle - Runs Ballarat Support Group
Richard is bilateral.
After cochlear implant in 2013 Richard took over as coordinator for the Ballarat Support Group which he continues today.
Richard said: "The Cochlear Implants have been one of the most life changing experiences for me and I am
forever grateful for them"
Juliet
Bruce Kirkpatrick OAM started the Meniere’s Research Fund because he wanted to find out more about Meniere’s Disease.
The Meniere’s Research Fund was a not for profit fund raising group established in 2001. It was established for the sole purpose of supporting research into Meniere's disease at Sydney Medical School, the University of Sydney.
This laboratory is the first in the world dedicated entirely to Meniere’s Disease.
We can all thank Bruce for his tireless fundraising efforts to support Meniere’ research.
Why did Bruce start the fund? Because of Juliet!
Glenda - Bilateral
Glenda is bilateral, she lost her hearing and now has two cochlear implants.
Glenda tells us: "The cause of my Deafness was Meniere's" “I am what I am ……. And I consider myself a very blessed person!”“I am what I am…… And I will always be a deaf person!”
Chris - Personal Trainer
Chris Morrow is a qualified Mature Age adult Trainer Personal Trainer who has Meniere’s Diasease. She teaches mature aged adults fitness from 60 onwards. Chris is 69 and says she is not an easy taskmaster. Attendees have to work towards their fitness. Her classes are based on falls prevention and improving quality of life.
Dianne - Nurse
Dianne was a registered nurse who has bilateral Meniere’s. Dianne was 58 when she was diagnosed with Meniere’s 13 years ago. " .... It is a daily challenge for all of us whether unilateral or bilateral. I deal with the symptoms as they happen and really try to give it as little of my day as possible. When it all becomes too much, I have used behaviour therapy with some success."
Paul
" ... At the time of my drop attacks it was suggested I have Gentamicin injections. This would have reduced or eliminated these attacks but I chose to ride it out as my balance was still very good and I knew it would have compromised my cycling and old age balance. I had a total of 16 drop attacks from July 2013 to Sept 2016. "
June - a Singer
"... As a singer I was often concerned should I lose hearing in both ears. As singers are right ear dominant I was still able to pitch perfectly despite diminished hearing in the left ear. During my singing career of thirty years, approximately 500 performances and 60 productions I only missed one performance as a result of Ménière’s. I often wonder if adrenaline has a part to play in the control of this condition."
Unknown Author - Unknown Date
"So, please don't judge me unless you've been in my shoes."
This story has been shared on various websites and goes back more than 10 years. Author and date unknown. Share this with family and friends.
Julieann - Author, Artist
Julieann is an author who was diagnosed with Meniere's Disease in 1995. She is an advocator of MD and has written books "The Colour of Broken" to raise awareness, profits of which are donated to medical research at MRFI. "For the future, I’ll keep on searching, researching, and writing. "It’s time to find a cure"See Julianne's bloghttps://myshadowmenieres.wordpress.com/2019/11/03/it-will-change-your-life-1/
Esther
Esther was diagnosed in 2000. "I feel any relief from my chronic imbalance may only come from a balance device or implant to restore the equilibrium of both ears. I am therefore hoping that budding inventors, innovators, scientists, researchers etc. will take up the initiative and fast track a device in order to reduce or eliminate the chronic imbalance."
Mathew
Mathew noticed there was a problem in 1997. His next episode was in 2006 and in 2007 he was diagnosed with Meniere’s. “Throughout my journey I have been very lucky with beautiful love and support from my partners and my son and daughters. They have been my rock and not sure that I would have gotten through without them. Work has been amazingly supportive but I feel like lately their patience has run out . “
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