Pushing Through The Day

Once in a while I have a good day, but most are very difficult. This week has been very difficult, but I continue to try to push through no matter. Upon getting up in the mornings I go ahead and make the bed, otherwise it might not get done. Just making the bed may sound easy to most, but to those of us with balance disorders it is not. The reason is your movement is from one side of the bed to the other which is sort of like being on a Merry-Go-Round for us. After the bed is made, we have to sit and rest to settle the movement which for me is like being on a boat, bobbing, sway and rocking. After some rest, I then tackle picking up clothes and/or dishes. To most that seems awfully simple. Aha, not to those of us with balance issues. Moving up and down again mimics the boat movement and gets the movement going again. It is really not the in motion that bothers me, but the stopping of the movement that is most bothersome. Standing is the worst so I sit until I can move again.  As you can imagine the reason movement does not bother me is because I can move with the boat movement.

The simplest of tasks are so difficult. I’ve often wondered if I will ever work again. I’ve thought if only I could just babysit a newborn, as I would not have to chase them around. But, I think of the safety of the child first. If I am holding the child and fall, I would be crushed if I hurt someones child. I have thought since I love to drive as the symptoms do go away while driving, that I could deliver papers. But I could not get through an interview because I rock so very badly until I actually get in the car and drive. Come to a stop light, I am back to bobbing, swaying and rocking again.

So the moral of this story is do not take the simple things of life for granted. I pray every day for a cure and to do those simple things again.

More Later………

Addition of Video to the Blog

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.

More Later…….

Memory and Vestibular Disorders

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.

More Later…..

Central Vestibular Disorder/Mal de Debarquement Syndrome

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.

More later.

September 2, 2013

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.