CORTICOBASAL DEGENERATION (DBD)

"BECAUSE HOPE MATTERS"
Some Web Pages to help you understand the disorder that Ruth has
http://www.wemove.org/cbd/cbd.html

http://www.wemove.org/cbd/cbd_cau.html

http://www.wemove.org/cbd/cbd_sym.html

http://www.wemove.org/cbd/cbd_dia.html

http://www.wemove.org/cbd/cbd_tre.html

Detailed web sites if she wants to learn more:
"BECAUSE HOPE MATTERS"
http://psp.org/

 http://www.curepsp.org/about/cbd.html


Here is a link that doctors can get into:


http://www.mdvu.org/library/disease/cbd/

Here is the link for the trial. Kind of medical but it gives some
contact information for the researchers.
http://www.clinicaltrials.gov/ct2/show/NCT01174771?term=cbgd&rank=1

Because "Hope Matters".
I put this on mom's blog.
There was also a series on Good Morning America with Michael J. Fox on the
use of Bioness
http://www.bioness.com/

Tuesday, January 11, 2011

BECAUSE HOPE MATTERS

Dear Family and Friends:

One of my New Year’s resolutions was to get back to researching and supporting others with Cortico-Basal Degeneration (CBD) 

I made a promise to Mom (Grandma, Ruth Ballis, Aunt Ruth) a  long time ago that I would not give up on her and I would keep looking for answers for as long as it takes. Well , I am findings that others are out there fighting for this cause as well.  I also learned as you will see in the attached monthly news letter that our Doctors, Nurses, and Health Care Providers are not educated in the diagnosis, treatment and care for people inflicted with PSP, CDB and MSA.

CurePSP covers the United States, Canada and Australia. If you know of any healthcare providers that would be interested in participating in training or in receiving information about PSP, CBD or MSA, you can contact PSP.  PSP is offering education to any individuals in the health care field and establishments on diagnosis, treatment of individuals with PSP, CBD and MSA.

Finding time to research is often meet with conflicts of time related to work, family, friends and that precious time we set aside for ourselves.  However, I am finding that the words I was faced with during my very first google search such as; unfortunately, rare, no known cause, no known cure, no known treatment are becoming less frequent and are being replaced with phrases such as “Because Hope Matters”, trials, studies, research papers, causes, treatments and Support Groups.

Since I began searching for answers the following web pages have been the most educational and supportive.  Over time they has grown and they keep up with the latest developments.

I hope you will take a few minutes to review the news letter and links, share them with others and pray that researchers and dedicated people like these will someday find a cause, cure and treatment for this unmerciful disease.

http://www.psp.org

http://www.wemove.org/cbd/

Corticobasal Degeneration Overview

What is corticobasal degeneration?
Corticobasal degeneration (CBD) is a rare neurological disease in which parts of the brain deteriorate or degenerate. CBD is also known as corticobasal ganglionic degeneration, or CBGD.

Several regions of the brain degenerate in CBD. The cortex, or outer layer of the brain, is severely affected, especially the fronto-parietal regions, located near the center-top of the head. Other, deeper brain regions are also affected, including parts of the basal ganglia, hence the name "corticobasal" degeneration. The combined loss of brain tissue in all these areas causes the symptoms and findings seen in people with CBD.