CRUISE OF A LIFETIME
Imagine if you will, the cruise of a lifetime. For me that was on the Rhine River, Germany. Visiting Christmas Markets in December 2012. It is still with me now as I rock and sway.
I was based in Nuremburg, visiting my dearest and oldest friend Sarah. We grew up together in Melbourne, Australia.
She married a German, decided to live there. Hence, the reason for one of my many visits. Sarah had to work for the first week of my stay, so I booked my cruise…
A fabulous journey, the cruise fitting in well with the rest of my travel plans. Adding to which I was able to secure my cabin at agents rates, being a travel consultant, a mere $400 for a French balcony cabin.
What a price to pay. My name is Chris, and as a result of the above, now suffer from Mal de Debarquement Syndrome. Here is my story to share with you and my journey and experiences since that time.
Upon arrival back to Nuremberg, I was experiencing rocking sensations, like being back on the boat. I am so tired in the afternoons. When I lay down, I feel like my head is being tilted backwards. My holiday is ruined. I still have 2 weeks to go. And it’s Christmas. I truly do not know how I managed Christmas Day. I guess it was the love of those around me.
I always take a half empty suitcase with me when I travel. As Sarah’s husband says ‘you help the German economy’. Because I love to shop. But even shopping became an effort and displeasurable. Dealing with crowds, noise and bright lights. As I know now, all typical of MdDS symptoms.
Managing through the ‘silly season’, my return to Australia marks where one journey ends and another begins.
I was home on solid ground. Yet my body was telling me otherwise.
My return to work was not fabulous. I was unable to sit for any length of time at my desk in front of the computer. I was even clumsy at making a cup of tea.
My Dr diagnosed BPPV. He attempted the Eply Maneuver and I was given a series of exercises to do at home. To no avail. A second visit to my Dr conveyed a diagnosis of labyrinthitis and a referral to an ENT. It was here I was diagnosed with Mal de Debarquement Syndrome. She recommended a month off work with complete rest. In the interim, my CT scan and MRI came back normal. The ENT also referred me to a neurologist. – which makes sense as MdDS is a neurological condition. I paid $230 for the privilege to be told to ‘go home and deal with it – if you had a broken leg you would deal with the pain and get on with life ’. MdDS is a chronic condition, not like a broken leg which is acute.
After 4 weeks of ‘resting’ the best I could, I had a meeting with my employer. He suggested that perhaps that I should find another less stressful job. I knew then I was going to have to resign.
I endeavoured to find support and joined the American Yahoo Support Group. I posted in the hope of finding other Australians suffering the same fate. Low and behold – 4 other ladies all within a 1 hour radius. The MdDS Australia Patient Support Group was born.
Our group has grown to over 150 members. Many of whom have a story to tell from misdiagnosis to treatment not fitting the condition. I feel very blessed to have these people in my life. Some of whom have become very good friends. Soulmates, in fact.
A survey was put out to the MdDS Australian Community in December 2014. Interestingly enough, it was shown that 50% of the group had been self-diagnosed. The survey was repeated at the end of 2015. It distinctly showed greater awareness amongst medical practioners. The results were published on VEDA’s website (The Vestibular Disorders Association). Of which I am now also an Ambassador. MdDS Australia Survey Results 2015
We have certainly come a long way in raising awareness. Once I gave up work, I applied to the Depart of Human Services in Australia, seeking a Disability Allowance. It was rejected on 2 occasions. I was informed my condition was not fully treated. Excuse me, but MdDS has no effective treatment or cure. After 9 months, my second appeal saw MdDS recognised as a Disability, allowing other Australians with MdDS to make a claim.
We have also been fortunate to have a neuroscientist in Melbourne to take an interest in research. Dr Alan Pearce has been doing some fabulous work with Trans Magnetic Stimulation. His results to date have been promising and were published in January 2015 year in the Journal of Neuropsychology. Unfortunately, I don’t meet the criteria for his treatment trials due to other medication I am taking (non MdDS related).
Onwards and upwards as they say! I have a chronic neurological balance disorder which is with me 24/7. Some days are better than others. I have a list of over 20 exacerbating factors-including low weather pressure, hormonal changes – I am pre menopause- , fatigue, stress, anxiety, confined spaces, bright lights – to name but a few.
I am a believer that we are all given a reason for events in our lives. For me, it is to help raise awareness of MdDS and to assist in research efforts. So, I trust the recount of my journey thus far will be of benefit to those who read it.
Chris Daws Founder, MdDS Australia Support Group Ambassador for VEDA - Vestibular Disorders Association Leader, Better Health Self Management, Ongoing and Complex Care, Central Coast Local Health Network