HAWARDEN—June is Mal de Debarquement Syndrome (MdDS) Awareness Month. For 55-year-old Pauline Lynott of Hawarden this imbalance and constant rocking/swaying sensation came on during her honeymoon to Aruba while on a boat ride parasailing.
“Little did I know that I would return home with a lifelong condition,” Lynott said. “I wouldn’t wish this on anyone.”
Mike an Pauline were united in marriage March 14, 2015.
Lynott could tell there was something wrong when she and her newlywedded husband Mike returned home. She describes her symptoms as “walking like I was drunk all the time” but she later learned it was because her balance was off. She struggled with bright lights, had intense migraines, brain fog and was always nauscious.
“My doctor sent me to a neurologist, this is when I was first told about MdDS, but the diagnosis came after I saw a neuro-otologist.”
Lynott describes her initial thoughts on being diagnosed with MdDS as most people do when they receive the news they will have to live with a lifelong condition.
“My world was shattered when he said there was no cure for my condition,” Lynott said. “No shot, no pill and no known therapy, ‘go home and try to live your life’ he said. Little did I know that MdDS would be a huge beast that I could not shake loose.”
An online support group has helped Lynott through her struggle with MdDs and she says it “literally” has helped save her life.
While many have heard of a condition called vertigo, Lynott says MdDS is many times worse than that those suffering from MdDs have multiple symptoms.
“I have tried several things to try and get off this boat,” Lynott said. “Gyrostim in Denver where they buckled me into a machine that goes around and around in every direction, like a carnival ride. They gave me a laser to point at targets, I did really well hitting the targets at 90 percent of the time. That is when the Denver doctor told me I had the worst case of MdDs that he had ever seen.”
Lynott joked there was no trophy given or anything for the prestigious accomplishment. She has been through physical therapy, vestibular rehabilitation and ketamine treatments. Lynott also says she has been through the five stages of grief since her diagnosis. She described the first stage as being “very hard” but says over time she has just learned to accept that this is her “new normal.”
“Mike is my rock and he loves me unconditionally,” Lynott said. “My sister is my biggest fan. Mike keeps me stable, my sister keeps me sane. Over the past five years, my family and friends have been absolutely wonderful. Many people in the community know I have this condition, are very understanding, ask if I need any assistance and are so willing to help.”
Lynott enjoys spending time with her husband Mike and she has one daughter Megan Johnson, a son Jett Farrell, a stepson and stepdaughter as well as four grandchildren. She also has 14 brothers and two sisters who support her through her diagnosis.
“I love to read, collect and write on rocks and spend time enjoying our backyard,” Lynott said. “Getting together with our families is the biggest blessing of all.”
Lynott’s hope is to help spread awareness so people know more about MdDS and what it is like living with it.
“If this story helps one person to seek help, that is truly a blessing.”
LYNOTT WRITES BLOG:
WHAT IT FEELS LIKE TO LIVE WITH MdDS
“I don’t want a boat. I’ve been living on one mentally since I stepped off one in March, 2015.
I do not go anywhere with out my sunglasses. Bright lights or any light for that matter, hurts my head.
Patterns and bright colors make me want to vomit.
Don’t ask me to do something next week. I don’t know how I’m going to feel in the next hour, let alone next week.
Gravitational pulls are something you cannot imagine. Pretend you are a magnet and you are being pulled toward a piece of steal the size of a truck. The truck is beneath you, in front, behind, and to the right and left of you. It’s the worst carnival ride you have ever been on.
I don’t ever want a trampoline. I feel as if I walk on one 24/7.
I feel like I’m in a body cast along with a helmet, and it is all made of cement. Now imagine your trying to walk through mud, with all of that on.
Every. Single. Day. My head hurts. Migraines are becoming a way of life.
The pressure I feel in my head is unbearable. I feel like an over ripe tomato that’s splitting, ready to burst.
I don’t start my day with “ A cup of Folgers in my Cup.” I start it with taking anti~nausea medication, depression medication and anxiety medication. At night I used to take Migraine Medication, to stop the ongoing migraines I used to have, this medication has helped reduce my migraines by about 80%.
Holding on to walls, chairs and anything else that is available is a great way not to fall.
The wind, rain, snow and barometric pressure is not my friend. Same goes for a full moon. As I am writing this, the weather has been horrid for me. Windy every single day. I went to an ear specialist in Feb, and due to this condition, my left ear balance only works at about 25% and my right ear is a little better, working at about 45%. I have wonderful hearing, it’s the vestibular part that is messed up. My eyes track at a very slow pace. The Doctor doesn’t know why.
Sitting on the shower floor to take a shower really is not that bad.
I cannot look at anything that moves. Tree’s, scrolling the computer, cars and lots of T.V. shows. Especially anything that appears in 3D.
Having to lie down after every house hold chore is a great way to rejuvenate my body for the next thing on my list.
Going to bed at night is my favorite part of the day.
If I don’t keep my body tense, I physically shake, bob and sway.
I had to resign from my job, because of this beast.
I have a great Doctor and if I go to any other Doctor, she tells them to be sure to look up MdDS.
I cannot go to the grocery store. My husband does all the shopping. The bright lights and patterns, along with narrow isles send me into a panic mode.
Where ever I sit, I need to have my back against something to keep my world from bobbing.
I use to be a social butterfly, loving to dance and go out, anywhere — at my leisure.
MdDS stole all that from me.