What does mal de debarquement mean?
Mal de debarquement (or mal de débarquement) syndrome (MdDS, or common name disembarkment syndrome) is a rare neurological condition usually occurring after a cruise, aircraft flight, or other sustained motion event. The phrase “mal de débarquement” is French for “sickness from disembarkation”.
Mal de debarquement – Wikipedia
I thought I’d go back to the beginning because everyday someone somewhere is saying “What The Hell Happened To My Life”. Recently I was in a Neurologist office for a nerve conduction study. I forgot to take a brochure on MdDS so I asked him was he familiar with this Vestibular Dysfunction. I got the traditional you are silly and you have 4 heads because there’s no such thing look. It just floors me that a doctor who deals a lot with neurological disorders and diseases doesn’t know anything about MdDS. Why? They say it’s a rare disorder. Maybe it’s just under diagnosed. If you don’t know what it is and have never heard about it, how can you diagnose a disorder that destroys lives, marriages, livelihoods, and much more. Ask a person with MdDS what is the simplest task you do daily, that is the hardest thing for you to do daily. Some will answer get out of bed. Others taking a shower or brushing their teeth. A normal person is scratching their head and thinking what, huh? If a patient with MdDS can barely do the easiest task daily, imagine that they have a small child to care for, has to work, has a stressful on their feet job, has a spouse and/or friends who just don’t get it. My favorite saying is they don’t get it, until they get it.
Now let’s look at research for a cure. I think there are 4 doctors who are actively researching this disorder in the USA. There is Dr Cha, Dr Dai and I believe 2 others. They’re may be more who don’t get recognition but are knowledgeable enough to help, they are the clinicians. There is a piece of equipment called a GyroStim. I accidentally found this by a gentleman who had a stroke and was using the GyroStim for balance and cognition. I called GyroStim, got a list of locations and in May took a chance with a doctor who had treated MdDS for 10 years with Vestibular Rehabilitation Therapy, but had never tried treating with the GyroStim. She is an out of the box thinker and after knowing the risks and benefits we moved forward. It’s coming up on 6 months and I’m still in remission. This is experimental and needs more research and she is working towards that end. The name of the clinic is Avora in Asheville, NC. The name of the Doctor is Dr. Kim Fox. You can do your research, talk to GyroStim about other locations that may be closer for you. Just be sure the clinic knows how to treat MdDS and has a “target” system in the GyroStim.
For the Family and Friends of persons with MdDS. We may look perfectly fine on the outside, but inside we are suffering daily. Instead of saying you look fine to me, how about helping the person by cleaning the house, bathing the children, or cooking dinner. Stress is our enemy and rest our friend. Be kind. You never know when your time will come and you need help.
Life is Good for me right now. I know it can change in a heartbeat. The GyroStim is not a cure but a treatment and so I still watch everything I do. I try not to let Stress enter my world. If I can’t, I’ve learned to say No. Work is not in my vocabulary for now….but maybe the anxiety of worrying about stress will abate one day enough to try to work at least part time or from home.
One last thing that has happened since writing this a few weeks ago, my mom is not well and has entered Hospice and my brother is not well after having several strokes and is now in a nursing facility rehabilitation program. Stress is not my friend and I will certainly attempt to take things one day at a time.
The website for GyroStim is GyroStim.com
The website for Avora is AvoraHealthcom
It is now April 29, 2018. Mom passed December 18, 2017 and my brother is a permanent resident at the same nursing facility mom was located for 3 years of her life. I made it thru the stress and now will proceed with life. I now go and do a little shopping, ride my bike and do mini walks. I still avoid stress and the anxiety has reduced but not 100%. It was only 5 years ago that I was diagnosed after suffering and going to a multitude of physicians for help. Five years ago I was walking with a cane and rocking so hard it was very visible by others. The GyroStim and Dr. Fox gave me my life back by about 90%. I still occasionally feel the floating sort of a detached from my body feeling, but no where near where I was just one year ago May 2, 2018 will be my one year anniversary. No cane and no one can visibly see when I do have the floating feeling. If I can not be 100%, 90% is good enough for now. Hopefully time and neuroplasticity will give me 100%