MDDS

Barbara gets Mal De Debarquement Syndrome. MDDS. 😢 We get off the boat after our last trip and Barbara's vestibular system thinks we're still on the water. This is nothing new. She always gets a little, "land sick", after a boat trip. She's laughed about it because she's so sensitive to it that the boat doesn't have to even be in the water in to trigger it. Just being on the boat, on the trailer for a few hours, can do it when she gets off. And she's been happy that she hasn't gotten seasick on the boat! A little land sickness is so much better.  It usually lasts for a day or 2 then fades away. This time not so much. After 1 week the swaying and bobbing seems worse. She starts to worry that it has nothing to do with getting off the boat. Maybe it's cancer? A brain tumor?  The doc says, good news, no cancer! Bad news, she has a very rare condition called MDDS. It's so rare that there isn't much known about it. He tells her it may go away on it's own or it may never go away and it may get worse. Some MDDS sufferers can't walk even without assistance. He advises that she never go on a boat again because it can make the symptoms worse, or bring them back if they've gone away. Airplane flights and long car trips are also risky. How can this be!!? Barbara is in shock at this diagnosis. I am too. Literally, it's like the ground has been pulled from beneath her feet. In one moment, your life plan can take a sideways turn that you never saw coming. We are both grieving the loss. I wish I could do something to help her.           3 Month Update- No improvement. Barbara got into a study that uses a variety of experimental treatment protocols for MDDS at Mt Sinai Hosp in New York. She underwent treatment in New York for 5 days. Unfortunately, she was in the 25% of participants who have no response. She's now trying supplements and the medication Effexor. She's trying to stay hopeful.