Jen's Groups
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Jen's Page
Latest Activity
For individuals with gastrointestinal diseases and motility disorders to connect, share info and support each other.
I am waiting for that diagnosis to be offical by the Neuro. I had that long 3 hour, $1,000 memory test. It showed my main part of my brain and two other parts are affected. I was being tested in plans for DBS. That's not going to happen with how b...
My Physiatrist bought that up and suggested that I be tested ( I have Generalized, DYT1 neg, and it did progress), now I know where that idea came from. Subsequently, I ask my MDN about it (Hermanowicz), he didn't think that is what I had- but he ...
Thanks Beka,
I hope you are doing well. I still haven't received word on the rest of the results of my muscle biopsy. I am currently dealing with fevers that seem to be associated with a possible central line infection but all my cultures are com...
Hi Elaine,
Just thinking of you. I hope that your appointment went well and I'm wondering how things are going with you. I've fully recovered from my surgery, but now have had increasing symptoms of abdominal pain. I was diagnosed with pneumatosi...
Profile Information
- More about me (my health interests and reasons for joining WEGO Health)
- I am currently a dual major Ph.D. in Neuroscience and Psychology at Indiana University. My decision to study Neuroscience stems from personal experience with severe generalized tardive dystonia which causes muscle spasms throughout my body. I was diagnosed with generalized dystonia in 1996 about a year after a bout of food poisoning and acute reactions to medications. I have severe allergies and react poorly to many medications. I also have severe gastroparesis (stomach paralysis) and small bowel dysmotility and am dependent on intravenous nutrition (TPN). Other diagnoses include nutritional deficiencies, peripheral neuropathy and fibromyalgia.
Despite a year of rehabilitation and having to drop out of school after aquiring dystonia, I re-enrolled and finished a B.S. in Animal Science in 1999 and an M.S. in Kinesiology in 2003. This led to my interest in movement disorders and how dystonia and similar diseases affect the brain and can be successfully treated. My background in Animal Science provided a bridge to my present study of neurodegenerative disease, behavior and motor control. My research focuses on evaluation of the neurophysiology and neurochemistry of the basal ganglia and related structures. These areas of the brain are involved in movement and also play a role in motivation, emotion and cognition. My dissertation focuses on evaluating the role of 17-β-estradiol (estrogen) as a neuroprotective therapy to delay the onset and progression of Huntington’s disease in mouse models of the disease and is funded by the National Institute of Neurological Disorders and Stroke.
I am also mother of a 3 year old who is the joy of my life. He was recently diagnosed with juvenile polyps and I am learning how difficult it is to be the family member rather than the patient.
I have been involved in disability awareness and advocacy for about 10 years and have enjoyed presenting locally, statewide, nationally and internationally. I am particularly interested in educating about movement disorders and the benefits of service dogs. Recently I have also begun efforts to bring about awareness of gastroparesis and the needs and concerns of individuals on enteral and perenteral nutrition.
Jen's Blog
My WEGO Spotlight
There is more information about me on my spotlight interview page:
http://community.wegohealth.com/profiles/blog/show?id=2028394%3ABlogPost%3A22538
http://community.wegohealth.com/profiles/blog/show?id=2028394%3ABlogPost%3A22538
Posted on April 5, 2009 at 2:30am —
Comment Wall (27 comments)
- At 10:10am on November 13, 2009,
Barbara Engle said…
- At 2:41pm on November 6, 2009,
Stace said… - I have to go in for colonoscopy .. but because of dystonia.. I have to go into the hospital instead of clinic... Is this par 4 the course? Anyone?
- At 2:37pm on November 6, 2009,
Stace said…
- Jen.. once again.. u r telling my storyThanks a million times!
- At 9:52am on August 21, 2009,
10a said… - Hi Lovely Jen! I love your new pics! That Baby Boy sure is growing up FAST:) and handsome! I have had some success with my natural approach to writers cramp! Much Love and Happiness <3 Tenee'
- At 10:32am on July 17, 2009,
FelicityNexus said… - HI jen, every day i check my email i think of you as i have the wego page saved : ) I pray that your surgical procedure went well.And that it will be sucesful also. I apolgize for this belated wish , however i have been wanting to write a get well wish for you my fellow dystonian.
- At 1:45am on July 5, 2009,
Lene said… - Your my hero Jen. You are courageous. God Bless you.
- At 10:49pm on May 7, 2009,
lois said… - Well the big news now is No Nexium with Plavix and I am on both. I hope to be off Nexium with a good report after next EDG. I'm feeling a lot better though, before I knew I had ulcers again, I was trippy on my chest aching/burning. So, being treated for it and getting relief has been tremendous. Wall Street Journal had another article today on the use of Nexium and the likes with Plavix. So, I have people worried for me. My cardiologist said okay for now to be on both. Life is fun and complicated. Thank you for your encouragement.
- At 8:20pm on April 15, 2009,
Imove said… - Jen, you were the first to suggest a possible connection between mitochondrial disease and dystonia to me. I hope you're doing ok and that your testing has lead to some answers for you.
I just had an NCT/EMG yesterday at the Univ of Birmingham in AL, performed by a neuro-muscular disease specialist there. They do not feel dystonia is my problem, thankfully, and instead found neuropathy in my feet and toes from dead/damaged nerves in my calves. She said the muscles in my feet are irritated from the damaged nerve endings, and that's causing the spasms with even just the slightest movement. She has started me on Klonopin to try to calm the muscles down. She also found a low carnitine level, necessary to fuel the mitochondrial cells in my muscles. She feels the deficiency is responsible for the muscle fatigue/weakness when I go up stairs. She has prescribed a carnitine supplement for that. I just wanted you to know how things have turned out for me. I will likely not continue with the dystonia group since I don't really fit here anymore. I am grateful though for the friends I have made here and for all that I have learned.
Be well,
~Connie~
- At 8:47pm on January 23, 2009,
Imove said…
- Hi Jen - I've had you on my mind and know your mito eval in Boston is sometime this month. Have you had it yet? Hope you're feeling well these days.
~Connie~
- At 11:20am on January 6, 2009,
Ellen S said… - Hi Jen, Just thinking about you and hoping you are doing better. I think about you and your upcoming mito evaluation often, knowing that it is drawing close. Please do let us know how it goes and how you're doing.
Peace to you
© 2009 Created by Marie
