Somehow you have happened upon my little homepage. If you are at all
interested in the life of a graduate student who is passionate about science, advocacy and education then keep reading. If you are sick of coming across strange links after endless hours staring at this screen then feel free to click on that close button with your mouse at any time.
Check out my new blog!!
About Life & Family: My time is currently being spent studying and spending time with my husband and my infant son. I am married to a wonderful, loving man who is my best friend and an awesome Daddy. Greg and I met at the U of I and were married in May of 1999. In June of 2005 we were blessed with our first child, Leif, who amazes us on a daily basis! My mother is a professor at
Bradley University.
My father is retired from Central Illinois Light Co. (CILCO). I also have a brother, Jeremy,
who loves playing the drums, biking and mountain climbing. He recently graduated with his B.S. in nursing from Bradley University.
You can check out some some cool pics. Just click
on the camera.
click!
Here are some of our beautiful wedding pictures!click!
Check out some recent pictures of Leif, our beautiful baby boy!click!
About IU: I am currently a PhD candidate in Neuroscience at Indiana University. I am thrilled to be studying an area of science where research is on the cutting edge. My area of study is neurophysiology of the basal ganglia, an area of the brain responsible for motor control. Here are some Neuroscience links:
Society for Neuroscience
Neurosciences on the Internet
About U of I: A little about my alma mater. I graduated in 1999 with a B.S. in Animal Science from the University of Illinois. In 2003, I graduated again with my M.S. in Kinesiology (movement science) with a focus on motor control and movement disorders. My thesis project was an evaluation of using visual cues to improve gait in individuals with Parkinson's Disease.
In my opinion, the University of
Illinois is one of the best schools in the country. It was the first university to become fully accessible to persons with disabilities. Students with disabilities at the U of I began a program in 1950 and the university continues to make sure that everyone is given the means to get a great college education. The Division of Rehabilitation Services (DRES) at the U of I encourages students with disabilities to strive hard despite whatever their situation may be.
DRES also supports the wheelchair sports program at U of I. Many of
the athletes have the oppurtunity to compete nationally and sometimes even
worldwide. Some of the great athletes
and coaches that have come from this awesome program are Jean Driscoll, Scot Hollenbeck, Marty Morse, and Brad Hedrick.
About Dogs: I love animals of all sorts, but I am a bit partial
to dogs because I have a service dog
of my own. Kramer is a chocolate lab who graduated with me in June of 1997,
from Independence Dogs Inc (IDI). Unfortunately IDI closed their doors in 2002 which was devastating to all of us. Fortunately, the head trainer at IDI (our trainer), Julie VanVliet opened a new service dog school based on IDI's training principles, The Gift of Sunshine. Julie got Kramer as a puppy from
the Society for the Prevention of Cruelty to
Animals(SPCA) who had rescued him. He grew up at IDI and was trained as a wheelchair
dog.
Basically this just means that he does a great job of pulling my manual chair. His favorite jobs are pulling up ramps, opening doors, turning out the lights and bringing my shoes. He also does great retrievals, bracing,
and many other jobs to help me out. Kramer really loves to work. Here are some
more service dog links:
Check out Kramer's Service Dog Page
Delta Society's Homepage
Service Animal Info. Page
International Assoc. of Assistance Dog Partners
Assistance Dogs International
Dr. P's Assistance Dogs
About Disabilities: I have by some unfortunate means acquired a
disabling movement disorder known as
Dystonia.
Dystonia is more prevalent than many more well known neurological diseases
like Multiple Sclerosis, Huntington's Disease and Muscular Dystrophy.
However, many people have never even heard of it. Dystonia is a
neurological movement disorder caused by damage to the area of the brain
known as the basal ganglia. Dystonia is often very painful and can often
be quite disabling. Many people with dystonia
rely on mobility aids such as wheelchairs, crutches and canes. My Dystonia
is called secondary generalized
dystonia. It is "secondary" because it was triggered by drugs I was given
during a routine hospital stay for food poisoning. "Generalized"
means that it can affect any muscle in my body as it "chooses". The name
given to movement disorders caused by medication is "tardive
dyskinesia". Tardive
Dyskinesia can be caused by a variety of
medications, mainly neuroleptics. My form of tardive dyskinesia is called
"tardive dystonia" because it has manifested as generalized dystonia.
There is a lot of research underway to find a cure for Dystonia and other
drug-induced
(tardive) movement disorders.
If you would like to read more check out My Story
If you would like to read another more recent health story check out My Story Two
More Dystonia and Tardive Dyskinesia Links:
Tardive Dyskinesia/Dystonia Site
Tardive Dystonia
Care 4 Dystonia
NINDS Fact Sheet on Dystonias
Dystonia Medical Research Foundation
Douglas Smith tells My Story
Drugs that can cause TD
National Empowerment Center On TD
TD article
Types of Movement Disorders
Friends With Dystonia
Dystonia Information
Brain Research-
Dystonia
Dystonia Support Group
Dystonia
Support Bulletin Board
MGH Neurology Forum
Tyler's Hope for a Dystonia Cure!
Article on DBS Treatment
Dystonia Pages-United Kingdom
Paddy Doyle's Site
Cathy's page
Tangela's page
Stacia's page
If you would like to know more about Dystonia you can contact the Dystonia Medical Research Foundation in Chicago at: dystonia@dystonia-foundation.org
Here are links to other health issues that I have encountered in my life:
About the Health Care Crisis: I have decided to put up this section regarding health care. Based on my personal experiences and those of many others especially in the USA, it seems that we are going through a severe crisis in health care. Budgets and HMOs make money more important than quality patient care. Health care workers suffer from being overworked, underpaid and unfortunately undereducated about ideal patient care. All the problems from HMOs to budgets to deficiencies in administration at hospitals to egotistical doctors leads to this decline in patient care. Ultimately this results in disability for many like myself and death for others. The problem is even greater in the mental health field. In psychiatric facilities across the country people face horrific abuse and human rights violations all the time and no one seems to notice.
What can we do? Well besides not needing health care, which is hard to do sometimes, we can be advocates for ourselves and others. Tell doctors, hospitals and health care workers about the problems you are experiencing. Educate yourself about your health problems and be ready to educate doctors and health care workers about your problems and what you expect as quality care. Speak out about quality health care and advocate.
Many nurses and others are working on establishing programs for education on how to provide quality care. Advocacy groups of people who need health care are being formed to give a voice to patients to speak out against poor and abusive health care situations. The word is "care" and we have to stand up for that word as patients. We have to come together to make the chaos in the system stop.
Here are some links. Please e-mail me with more if you know of good ones to post. I am always searching for sites like these. I am also going to include sites on disability rights. (It will be a while before I get all these links put up):
Health Care Advocacy Links
Consumer Coalition for Quality Health Care
Consumers for Quality Care
Consumer advocacy article
Health Care Rights
California Consumer Health Care Council
Creative Health Care Management
Disability Rights & Advocacy Links
National Assoc. For Rights Protection & Advocacy
MadNation
Mouth-Voice of the Disability Nation
National Empowerment Center
The Nth Degree
About Climbing: Before I aquired a disability, I was obsessed
with mountain climbing in the Rockies. Specifically the Tetons. Here are some awesome climbing links if you are
interested.
Mark Wellman (a physically
disabled climber)
Exum Climbing School (where I learned to climb)
Big Dog's Climbing Page
The Earth Gallery-Rock Climbing Links
Big Wall Home Page
click!
Copyright for graphics on this page belongs to whomever created them (including myself). Please e-mail me if you would like to use any graphics or text.
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The FriendsWithDystonia SiteRing This site owned by Jen & Kramer MANAGERS: Stormy, Dee, and Sis |
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