I have added 2 videos. One is an airing of ABC’s Mystery Diagnosis that is great for explaining the disorder and another that is a very talented young lady, Hayley, who took liberties with the song “Rock the Boat” to remix it for MdDS. She has a beautiful voice and I think you will enjoy it very much.
This may be my last post for a day or two. I expended a lot of energy trying to get this blog up and running. But I have some funny and informational ideas ahead so stay tune.
Quite a discussion on FB yesterday regarding our short-term memories. My question is could this be linked to some degree with Alzheimer’s. Maybe but that would not explain the imbalance. I can be talking and in mid-sentence will forget what the words are as well as an entire thought. This is very frustrating and can be embarrassing as well. The research shows it is not that I am “crazy”, but because Vestibular Disorders do have a symptom of short-term memory loss. So when I think it’s Alzheimer’s, it’s probably not. It is this wonderful disorder called Mal de Debarquement Syndrome or also known as a Vestibular Disorder that I have been blessed to endure.
I thought I could write weekly regarding my Vestibular Disorder but I found it really became quite the challenge. I was diagnosed in 2011 with Central Vestibular Disorder even though I have had this disorder since 2009. Now it’s been nearly 6 years and I’m still rocking, bobbing and swaying. It has been very difficult with my short-term memory, cognitive functions and daily living with this disorder. Imagine trying to navigate on a trampoline every day of your life. You worry constantly about falling, more for the fear of getting hurt than the embarrassment of the fall. I have problems with going to grocery stores because of the isles. I don’t like crowds and loud noises. They are all triggers to make the symptoms worse. I use spell check to assist in spelling correctly the words I want to say. Math is very difficult for me now. I went to school for accounting and was a Medical Practice Manager for over 20 years. Now I am a homebody and go out only when really necessary. I do love to drive. Driving makes all of the symptoms disappear. But when I have to come to a stop, my head begins to bob and sway.
They say I may have Mal de Debarquement Syndrome, but there is no cure. I refuse to accept that and will work to beat this Syndrome if at all possible.
Doctors need to be educated that we are not crazy. We do want our lives back and this is REAL. Look at how long it took me to get to a diagnosis. Before 2011, I had been to a neurologist at Duke University Medical School, a psychiatrist and an ENT. None of them could diagnose me. It took another ENT willing to listen, a neurologist who BELIEVES ME and a great family support system to get me to where I am today. Admittedly, it’s not much better but knowing the diagnosis is half the battle.
This is the beginning of my personal blog in which I will try to share the disorder for which I was chosen to endure. I was diagnosed in 2011 with Central Vestibular Disorder? But, this year discovered the more correct diagnoses may be Mal de Debarquement Syndrome. For those of us who have MdDS, life is forever changed. We rock, some more than others, and we tire with very little effort. Our days are filled with what ifs and making plans we may or may not accomplish. Getting out of bed can be an accomplishment. Getting a shower, making the bed and getting breakfast can wear us out to the point of needing to go back to bed. Symptoms include: Difficulty with balance, fatigue, inability to concentrate, comprehension, headaches, anxiety, intolerance to busy patterns, nausea, light sensitivity and many others
This is day one. More to come as this is all I can accomplish for today.