Lacey’s Story

Site created on September 22, 2018

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Newest Update

Journal entry by Lacey Dodge

I am horrible at keeping this updated.
As of right now my genetics have come back showing a slight abnormality in my mitochondria. It is very mild at 2 %, but is inherited from your mother. I am waiting to hear back from Dr Mowry at Johns Hopkins and the genetic specialist in Philadelphia in regards to my results.
 In the meantime I am scheduled for deep brain stimulation surgery on July 15th at the Mayo Clinic. The first surgery is to insert the leeds into the brain and I will be awake. They usually do two but will be prepared to do four if needed due to the severity of my tremors. Then a week later I will have another surgery to implant the wires under my scalp down my neck to the battery in my chest. (Or batteries if they do 4 leeds) Thats right most women my age are having breast augmentation, I'm replacing mine with batteries. 😐😁 If it helps my tremors, I don't care 😉

I've tried everything from diets, exercise, different climates, etc. Climate makes a big difference, but not enough to make it possible for me to take care of myself. We also stopped the MS medication that I was on, as the latest and greatest was not helping.

If this works and with everyone's positive thinking and a 95% success rate, it should.  There are so many things in life that most people (my old self included) don't/didn't give a second thought about doing that will no longer be a struggle for me to do.

My Tremors effect all four extremities and also my midline severely. It is not Parkinson's, but called Cerebellar Outflow Tremor. I have to walk with a walker, I'm not allowed to hold sharp objects, it's extremely difficult to prepare food, eat, drink out of a cup, shave, drive (so I rarely do, Im sure Grube  is glad to hear that  I'm being safe). As it is hard to drive because the midline tremor causes my head to shake and my eyes so it's hard to focus, and my wheel movements are very jerky. Texting and using my phone oh you have no idea. There are just so many things ........ yes I can use talk to text, but we all know how well that works sometimes. Just writing this entry in the journal has taken me days.

 I'm excited, nervous, but mostly grateful that there is something they can do for the tremors. MS wise I think I am okay, or at least that's how I feel.
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