Spotlight: Jen

Spotlight: Jen Blogs: Neurons with Dystonia and Caring Bridge Blogging since: October 2006 Diagnosis: Dystonia in 1996, gastroparesis in 2001 Work: Graduate research fellow at Indiana University Advocacy: Since 1997 I've focused on educating the public about movement disorders, gastrointestinal disorders, risk of permanent drug-side effects and the benefits of service dogs.

Tell us about your graduate school work.

I evaluate the neurophysiology and neurochemistry of the basal ganglia and related structures – areas of the brain involved in movement, motivation, emotion and cognition. My dissertation focuses on the role of 17-β-estradiol (estrogen) as a neuroprotective therapy to delay the onset and progression of Huntington’s disease in mouse models. The research is funded by the National Institute of Neurological Disorders and Stroke.

How does your research relate to your condition?

Although I don’t study dystonia models in particular, I study basal ganglia function from a systems level to better understand how these brain structures work together for movement and motor control. By understanding how these brain circuits work and by evaluating substances that protect them from dysfunction, I hope to gain knowledge that will be beneficial for treating many different movement disorders and neurodegenerative conditions. I’m thankful that I’m able to contribute to research that may be helpful for development of therapies for dystonia and other movement disorders.

Has dystonia changed your career -path?

Yes. I spent hours in the library as an undergraduate reading journal articles about movement disorders and basal ganglia function. At first I was trying to find a diagnosis, but I quickly became fascinated with neuroscience and came to realize I know enough about this to get a degree.

How are you treating your conditions?

Between dystonia and gastroparesis with small bowel dysmotility, I require a lot of medications (11-14 each day) to function as well as I do. I’ve found complementary therapies can be helpful to balance my body so I don’t have to rely as heavily on medications.

Meditation plays a big role in my ability to deal with my disabilities and pain. I’m currently benefiting from massage therapy, acupuncture and herbal therapies. I spend a lot of time researching various herbs because I like knowing there’s some science to support their use before trying them. You have to make sure herbal treatments don’t interfere with your medications or cause unwanted side effects, but generally they’re safer than typical pharmaceuticals. Complementary therapies help me stay as healthy and balanced as I can and ease the side effects of the drugs.

What treatment research interests you?

Because neuroscience is still in its genesis, neuroscientists are on the cutting edge of research. We’re always making new and exciting discoveries about brain function. I’m fascinated by the huge role hormones and vitamins play in maintaining and regulating normal brain activity for movement and behavior. I also love learning how different areas of the brain communicate and how the breakdown in these communication patterns leads to dysfunction and disease.

Who are your heroes?

Definitely nurses. Nurses have helped me through the most difficult times of my life. Many who have cared for me have befriended me and even become best friends. I owe my life and ability to persevere when my health deteriorates to great nurses. I cannot give them enough thanks and praise.

What are the most common questions people ask you?

Why do you use a wheelchair? This provides me with the opportunity to educate others about dystonia and movement disorders. I explain how dystonia causes the brain to send the wrong signals to muscles, resulting in abnormal postures and muscle spasms. Often they get an earful, but I think if people ask, I should give them the whole answer.

People who know me ask, How do you do it all? My reply is that you do what you have to. I’m not the kind of person who gives up on anything. Perseverance is how I cope with what life brings me.

Where do you turn for support?

I find bulletin boards and online communities such as Inspire to be very helpful. It’s always good to know you’re not alone. WEGO Health is also a great resource that’s growing, and I recently started a group there for people with gastrointestinal diseases. My family - in particular, my two year old who brings me daily joy - keeps me grounded and thankful for what I have.

Have your personal relationships changed?

When I first became ill some of my friends were confused about what was happening and just couldn’t handle it well. My boyfriend had a very difficult time and we had to break up. So I lost some friends. Many other friends were very understanding and supportive and we became closer, including Greg, who eventually became my husband. Over the years I’ve found out who my real friends are, and made many new friends with dystonia, gastroparesis and other disabilities.

What made you start your blogs?

Many people have contacted me over the years about dystonia and tardive dyskinesia, and I thought it’d be helpful to blog about my struggles and successes. Writing is therapeutic in that it’s an easy way to get my thoughts out and remember I can live successfully.

Any surprises?

That people expect me to write. If I haven’t written in a while, they’ll e-mail me asking how I’m doing. I appreciate that readers care and benefit so much from reading.

What are your long-term goals?

To graduate and get a good job with both research and teaching opportunities. I would also like to see improvement in my health. Unfortunately dystonia and gastroparesis often have the upper hand.

What do you worry about?

That my dystonia and/or gastroparesis will get worse. I hate being hospitalized but it happens quite often with severe gastroparesis. I don’t want to become permanently disabled and be unable to finish my degree. It’s a reasonable concern given the severity of my gastrointestinal problems.

What are your hopes?

To live long enough to see my son grow up and start his own family. I nearly died from complications of my surgeries for gastroparesis in October of 2007 (congestive heart failure and peritonitis). I love being a mother and I really want to be there for him. I’d also like to make discoveries about brain function that’ll help people with movement disorders.

Learn more about Jen.

Who inspires you? Let us know who we should feature in our next Spotlight Interview. Write us at community@wegohealth.com