While NORD defines “rare” as fewer than 200,000 cases in the US, MdDS is not as rare as previously thought. Nor is it a woman’s disorder. More and more men like Russell are reporting their cases. Please read and share. And if inspired, you can share your story, too. Please review the Submission Guidelines, and we’ll publish as many as we can for Rare Disease Day, February 29, 2020.
A Busy Day at the Lake
I had just spent two days of the Memorial Day weekend on a boat and dock. After departing from the lake, I stopped to get dinner with my wife. I finally sat down for the first time since that morning and felt “it.” Like many sufferers, I did not know what “it” was… looking back I now know the drive from the lake to the restaurant had masked any symptoms. I looked at my wife and asked,
“Does the floor feel like it’s moving?”
Obviously it was not, and so began my experience with recurrent episodic MdDS.
What had triggered this?
The lake was very busy that weekend as my family and I sat on the bobbing and swaying dock. After two days, my body could not adjust back to solid ground. I was living on a dizzying, rocking dock around the clock for the next three months.
I scoured the Internet for answers, and I came across many blogs and message boards pointing me to mddsfoundation.org. Armed with this knowledge I was able obtain the diagnosis of MdDS. With diagnosis comes acceptance, but the hardest realization was coming to terms that my dreams of a jet setting, high paid consulting career were over. My new focus was to avoid retriggering this affliction and still grow in my career to support my wife and future children.
I thank the MdDS Foundation for providing me with the knowledge I needed to get a diagnosis. So many of us are out there, and some may have given up hope for a diagnosis because they are unaware of MdDS.
As another MdDS sufferer said, we still deserve the best life we can live. With this in mind, we need to make it our mission to spread awareness. By submitting my story I hope that others will find their way so they can begin to heal and cope.
I have had three episodes since that busy weekend in 2016. For each occurrence, only time has given me remission. I could not even drive for two hours without possibly having another triggering event. After diagnosis and help from my doctor, I have been able to avoid future episodes during my very limited travel.