Who's Your Guardian?

Today, we had our third snow storm in the last 7 days. The girls had a snow day today and the hubby was kind enough to lend me his SUV. Better to put the brain surgery survivor in the safest car during an ice storm. The drive to work was pretty uneventful ~ slow going, but nothing too treacherous.

When it was time to go home around 5 today, it took a good 15 minutes to de-ice the car that was completely encased in a day's worth of sleet and ice. Seat belt securely fastened, defroster on, snow button depressed, windshield wipers wiping away, said my prayers asking for a band of angels to protect me and others on the road, I was finally ready to join the other crazy drivers on the freeway.

The roads were challenging ~ the sleet/sneet mixture had changed over to rain which was quickly freezing the slush on the road. No lane lines could be seen on the road in front of me ~ 18-wheelers and trucks were flying down the highway like it was a dry winter evening. I was a bit annoyed, but not frightened. What's an ice covered highway compared to brain surgery? I thought, as a motored towards the safety of my house ~ surely there would be a fire lit in the fireplace by the time I safely arrived. See what I did there ~ positive thinking ~ transporting me out of the not so comfy place that I was presently.

The exit signs seemed to come into vision at a snails pace ~ shouldn't I be getting closer by now? Just then, I focused on the Exit number sign just ahead ~ only two more exits until I am home ~ but wait ~ a cluster of yellow flashing lights caught my eye as a parade of three plows were entering the highway just a quarter of a mile in front of me. Like leading a charging cavalry, they forged abreast all three lanes on the highway ~ clearing the way for all the cars behind them. Some folks would be completely exasperated if this happened to them on their way home ~ me ~ I was happy to slow down and enjoy the slush free ride to my exit.

I breathed a sigh of relief and knew that I would make it home for certain. Those three snow plows were like brave soldiers leading their people into battle ~ leading the charge must take great strength and courage. All those people are looking up to them to lead, take charge, protect them. Reminds me of a scene from Return of the King when Gandalf rides out with his staff as he thwarts the Nasgul and safely leads his people to the safety of Gondor.

You see ~ all along I was protected by guardians ~ but it wasn't until I saw the lights of the snowplows til I realized I was completely safe from harms way. Who do you turn to when you need a guardian?

Hold On To HOPE!

Skull Design & Root Causes of Neurodegenerative Diseases

(Yeah ~ you've seen that gorgeous skull before ~ it's my very own) I stumbled upon the coolest blog this week ~ It's actually titled:

Alzheimer's, Parkinson's and Multiple Sclerosis, Getting to the Root Causes of Neurodegnerative Diseases

I did a search for Chiari within the blog and found numerous posts. Just glancing through some of the blog posts awakened the researcher in me like Rip Van Winkle after he snoozed way to long!

Here are a few snippets from the blog ~ Seriously, I think I could read the whole blog in one sitting and only grasp one-eighth of the meaning ~ it's deep and scientific and he's talking about us Chiarians ~ very interesting ~ what are your thoughts on the matter?

all humans are predisposed to the brainstem sinking into the foramen magnum due to its location beneath the skull.

Typically, the brainstem is surrounded by cisterns filled with cerebrospinal fluid (CSF) which allows the brain to float above the foramen magnum and base of the skull thus preventing contact with the bones of the base and foramen magnum. In a Chiari malformation, it is typically the tonsillar portion of the cerebellum that gets trapped in the foramen magnum.

the location of the brainstem and cranial nerves in relationship to the base of the skull and foramen magnum. Their location makes them highly susceptible to compression by either an increase or a decrease in CSF volume in the cisterns.

A short length in the base from the front to the back of the cranial vault, predisposes the brain to crowding and a condition called Chiari malformations in which the cerebellum or brainstem gets pushed down into the foramen magnum. Chiari malformations can block both venous blood and cerebrospinal fluid (CSF) pathways causing CCSVI and hydrocephalus type conditions. Chiari malformations used to be considered as a childhood problem for the most part. However, recent studies show that trauma can cause Chiari malformations in adults. What’s more, Chiari malformations have also been associated with multiple sclerosis.

And did I mention all of the pictures and diagrams on the site? Amazing!

Rogue DNA

One of my resolutions for 2011 is to start actively blogging again. I have about 80 drafts of blogs just waiting to be posted ~ many a time I have started with great intentions only to loose my train of thought in mid sentence...

About a year ago I found a website looking for Chiarians for a genetic study. Of course I definitely wanted to be included in the study and inquired as to what was involved. After a long conversation with the study's coordinator I found out that there would be some paperwork inquiring about the medical history of me and my family and a phone interview. Then, there would be a traveling phlebotomist that would eventually be in my area, come to my home and take blood samples from all family members.

Given the chance to contribute to research and science for the chance in finding a cure for Chiari ~ I was beyond thrilled to share my DNA. Although many doctors are in denial, Chiari couldn't possibly be genetic! Where's the proof? ~ WE know that it most certainly is and this genetic study will further prove the connection.

The Genetics of Chiari Type I Malformation is still looking for volunteers ~ you, too, could contribute to science and possibly help us find a cure for CHIARI! I have printed the details below ~ If you have any questions, please feel free to contact me.

Genetics of Chiari Type I Malformation

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 orchiari@chg.duhs.duke.edu. More information can be found on our website

http://wwwchg.duhs.duke.edu/diseases/chiari.html.