Information about rare neurodegenerative disorders
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About This Site

December 5th, 2011 | Posted by cbgd6278 in research - (12 Comments)

Reason for this Site:

I chose to do a site to gather comprehensive information on  CBGD. Diagnosed in 2002, he passed away in 2007 as a result of the complications from the disease. I wanted to gather as much information and combine it into one website since it was so hard for our family to find any information about it. My father’s own family doctor sent him to the Mayo Clinic in Minnesota since he could not find out what was wrong with him.  The Mayo Clinic diagnosed him with CBGD, a little known neurodegenerative disease in the Parkinson’s family. Although we did get second and third and even fourth opinions, the doctors agreed with the Mayo clinic’s assessment.  We made him as comfortable as we could but his mind and then his body slowly deteriorated before our eyes.  We always felt that to the end of his life that he could understand/recognize us.

I want this site to be used as resource to help those affected by diseases like CBGD, or PSP, and Parkinson’s. It was hard for us to find information about the disease. Is it genetic? Was caused it caused by the environment? These are questions that remain unanswered but I hope that together we will find them soon.

Clinical Trials

January 20th, 2014 | Posted by cbgd6278 in medical trials | research - (Comments Off)

http://clinicaltrials.gov/search/term=Corticobasal%20Degeneration

Other  organizations to contact about clinical trials  below. Although, I have posted information about clinical trials and  or support, I think it gets lost on this site.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT   06810
orphan@rarediseases.org
http://www.rarediseases.org External link
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
CUREPSP (Foundation for PSP|CBD and Related Brain Diseases)
30 E. Padonia Road, Ste. 201
Timonium, MD   21093
info@curepsp.org
http://www.curepsp.org External link
Tel: 410-785-7004 800-457-4777
Fax: 410-785-7009
Association for Frontotemporal Degeneration (AFTD)
Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA   19087
info@theaftd.org
http://www.theaftd.org External link
Tel: 267-514-7221 866-507-7222

Venomous Treatments and Neurodegenerative Diseases

February 3rd, 2013 | Posted by cbgd6278 in research - (Comments Off)

The video I posted tells the story of John Harvey and his fight to save his grandson from Duchenne Muscular Dystrophy using spider venom.   There is a protein in the venom that helps slow the symptoms of the disease. It is not a cure but a step closer to finding one. I also came across this article, Spider Venom to be tested as a cancer cure, as a  possible cure for breast cancer.  Researchers have discovered that there are certain toxins within the venom that can block cancer causing enzymes. Although Duchenne Muscular Dystrophy is a muscle disease, spider venom could also be used to treat neurodegenrative diseases.  What hampers more research, is getting sufficient amounts for testing.  Snake venom looks promising too, as certain toxins could help treat the symptoms of  CBGD or PSP. The complexity of  snake venom poses the  problem removing the deadly toxins so it could be used as a safe treatment.  Research is also exploring bee venom as a treatment for neurodegenerative diseases.  It increases T-cells (cells that fight disease and a key part in the immune system) and  help prevent neuronal degeneration. I’ve posted information on a trial for bee venom here.

For more information about snake, spider or bee venom check out  the links below:

The Reptiles: Snakes Venomous Cures

Snake venom may offer good source for new drugs against human diseases

Spider Toxins: Recent Applications in Neurobiology

Real-life spider men using protein found in venom to develop muscular dystrophy treatment

Bee venom useful to boost immune system against neurodegenerative disease

 

 

 

 

I stumbled across a medical research looking for volunteers to test alternative  treatments for CBGD and PSP. Since therapies used for Parkinsons have little or no impact on CBGD and PSP, the focus here is to find something that will alleviate  symptoms.

For more information:

Noninvasive Cortical Stimulation (rTMS) for Motor and Non-Motor Features of Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD

Social Security and compassionate allowances

September 30th, 2012 | Posted by cbgd6278 in Uncategorized - (Comments Off)

I came across some interesting information yesterday that could provide some help for those who are diagnosed with a rare disease or disorder. At least financially it could help. The social security administration has a program called compassionate allowances for those diagnosed with a rare debilitating disease or disorder. Medical documentation needs to  be be provided as proof of your condition and claims (according to the website) should be processed within three weeks.

For more information
Compassionate allowances

 


Super Brain Foods

July 18th, 2012 | Posted by cbgd6278 in brain food | exercising the brain | food - (1 Comments)

spinach

 

I decided to post something about foods to help the brain function better.  Even though we are aware that we need to exercise the body, I think we forget (myself included) that we need to exercise the brain too.  its important that we engage the brain critically because as some will say “if you don’t use it, you’ll lose it.”   With that in mind, I came across a couple of interesting sites that I hope you will enjoy:

Brain Metrix

Super Brain Foods

What is CBGD?

December 8th, 2011 | Posted by cbgd6278 in brain | Uncategorized - (31 Comments)

What is CBGD?

CBGD stands for Cortical Basil Ganglionic Degeneration. CBGD ia a rare neurological disease that causes parts of the brain to deteriorate.  Although it may be considered a syndrome rather than a disease.The outer layer of the brain is especially effected. As the disease progresses it affects deeper regions of the brain including the region basal ganglia. The basal ganglia is a group or cluster of nerve cells that are interconnected with the cerebral cortex, thalamus and brainstem. These cells play an important part in producing and controlling movement for the body.

Symptoms:

Symptoms begin between the ages of 50-70.It usually  starts on one side of the body but will eventually spread to both sides. The symptoms are similar to Parkinsons such as poor coordination, abnormal muscle postures, stiffness, jerkiness, slowness, halting speech and difficulty swallowing. Depending on the individual, the disease will progress slower or faster in some individuals over a course of 5 to 8 years. It affects both men and women and crosses racial/cultural lines. A person with CBGD will usually become immobile due to rigidity within five years of noticeable symptoms. Most often, within ten years of diagnosis, a patient will usually succumb to life threatening complications such as  pneumonia or other bacterial infections rather than from the disease itself.

Causes: The cause of CBGD is unknown and so far there is no evidence to suggest that it is an genetically inherited disease.  Studies have shown that those with CBGD show changes in certain cell characteristics.  It is noted that these changes include a protein called Tau. Tau protein is a highly soluble microtubule-associated protein(MAP). In humans, these proteins are mostly found in neurons compared to non-neuronal cells The tau’s main function is to modulate the stability of axonal microtubules.

(axonal is a long slender projection of a nerve cell or neuron).

(microtubule is a hollow cylindrical tube that is used to transport material/nutrients inside cells)

Now that I’ve explained to the best of my ability what CBGD is why should you care?

CBGD is considered a rare neurological disorder rather than a syndrome.  There is very little to be done to ease the suffering. Even though some of the symptoms may be similar to Parkinson’s, the therapies used for Parkinson’s don’t work for CBGD. Although it is not certain if this disease is hereditary, (We don’t know of anyone on my father’s side who had this) there is also no way for doctors to ascertain for certain if it is CBGD until after death and an autopsy is performed.  My question then is this, how many people does it take for CBGD  to be considered rare or not and when will more research be conducted?

Why we need to find a Cure

December 5th, 2011 | Posted by cbgd6278 in finding a cure - (92 Comments)
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A video from Murray Grossman, M.D., professor of Neurology at The University Of Pennsylvania. He offers his opinion on why we need to be persistent on finding treatments and cures for rare diseases and disorders. He expresses it much more eloquently than I ever could