"Systemic lupus is eight times more common in women than men."
Podcast: April 12-12-12 Project Member Rhiann Johns
(Image: Thanks babe for encouraging me to write on the car at random moments!)
Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.
April’s podcast is ready! Very proud and honored that Rhiann and her mother Hilary were willing to open up and share their personal health journey.
*My apologizes in advance for audio glitches. I just could not pass on an opportunity to share this important story. The writtten transcript should clear things up!
Much love,
Marissa
5 Facts About The Brain That Fascinate
The complexities of the brain are breathtaking. This month’s 12-12-12 focus on brain stem lesion has allowed me to explore and appreciate the fascinating mysteries of the brain. Listed below are facts I came across that blew me away:
Image: dream designs / FreeDigitalPhotos.net
1.“Consistency [of the brain is] somewhere between jelly and cold butter.”
2. “If you sliced off the top of someone’s head and peered inside, you wouldn’t see much happening at all.”
3.“In the ninetieth century, much was learned about the structure of the brain by removing it from the body after death.”
4. “Brain anatomy is hidden, secret, and more complex than any other part of the body.”
5. “The visual areas of the brain are at the back of the brain; therefore, information from the eyes has to travel the full depth of the skull before it begins to be processed into sight. “
Much love,
Marissa
Marissa Trying To Understand Brain Stem Lesions
Recording My Vestibular Rehabilitation Therapy Journey May Have Come To An End
I can’t stop, and I won’t stop? What happens when you are willing to share your journey, but others are reluctant? I got this crazy idea in my head ; I was going to record my vestibular rehabilitation journey, in hopes we may all learn from the experience. What I failed to realize before I promised to deliver:
1. I need to ask permission
2. I have no idea how to edit video
3. I can’t be in complete control of the video recording, because I am in therapy.
I often lead with ideas first, application second. I may need to rethink the way I approach project ideas.
I can overcome obstacles 2 and 3, however, convincing the physical therapy center to allow me to record this journey may become an obstruction of my goal.
I believe this PT center is the best at what they do. My PT therapist has won me over. She is all business, and together we will kick butt and take names.
If you believe capturing my vestibular rehabilitation journey, for the next three months, would be beneficial, please comment below. I will direct the owner of the PT center to your comments.
See brief video recap of VRT day 2, plus supplemental video
Allow me to earn your vote for positive change
Often left feeling that your vote doesn’t count? Do you avoid voting believing you are just another number? What if I could guarantee your vote counted? Would you be more compelled to vote?
Your vote counts
I am here to tell you your vote counts, matters, and you are not just another number. Raise5 is a fundraising platform, providing charities and non-profits creative ways to fundraise. Raise5 wants to “show the world that together, we can turn our free time and talents into a force for good!”
What are you voting for
Raise5 has been invited to compete in the Virgin Unite’s contest- ‘Screw Business As Usual’. Virgin Unite is currently looking for innovative business ideas, that “do more to help people and the planet.”
There isn’t much time
Voting ends midnight April 17th. Let’s help Raise5 stay within the Top 10. The Top 10 entries will have an opportunity to be reviewed by Virgin Unite’s judging panel.
Take action and vote
Check out the Raise5 Help us screw business as usual video entry, vote and share. (Click image below )
Much love,
Marissa
Rolling Up The Sleeves
Rolling up the sleeves getting down and dirty trying to understand the human brian. Picked up a highly anticipated read: The Human Brain, by Rita Carter.
Rhiann and I had a lovely talk today, and I believe she has an important story to share.
Much love,
Marissa
12-12-12 Project: April- Brain Stem Lesion
April 12-12-12 project focus is on a condition known as Brain Stem Lesion.
“Each area of the brain has a responsibility for brain function.”
This month we will talk to project member Rhiann Johns living with a brain lesion located in her brain stem. Rhiann was diagnosed two years ago with the condition and surprisingly enough has been told she has been living with the condition since birth. Doctors are unsure of the cause.
I will cherish the time I get to spend with Rhiann as I educate myself on the condition. Exciting getting the awareness bracelet and t-shirt in the mail today. Go Team Rhiann!
Much love,
Marissa
Video Blog: Vestibular Rehabilitation Therapy Day 1 and beyond
ATTENTION: If you suffer from a vestibular disorder or are sensitive to motion and movement, please note that this video is at times shaky. ( I am working on a solution)
I will be documenting my journey through Vestibular Rehabilitation Therapy. This video details day one. I end up running into the insurance machine but this time I prevail.
The focus of this visit was initial evaluation. The purpose of the visit was to provide history and set realistic expectations.
The goggles are part of the device called Videonystagmoscopy
“Videonystagmoscopy has been used to subjectively observe the responses of the vestibular system in a population of patients with vestibular deficits. The videonystagmoscopy device is made of one or two CCD cameras mounted on lightproof goggles, allowing a subjective observation of ocular movements on a video monitor. The eye movements, as well as the position of the head in space, can be recorded on videotape.”
As we reveal my defects we will gather a realistic expectation of what can be achieved through vestibular rehabilitation.
Much love,
Marissa
Team Amy
Part of the letter I sent out:
The day after getting this bracelet please wear it for the duration of the day. Throughout your normal daily activities you may be reminded that you are wearing an awareness bracelet. When you think of the bracelet think of Amy and the approximately 2.5 million people across the world that are living with a condition that is attacking their body. MS is a condition, which affects quality of life and often hinders the ability to participate. Please take a photo of you rocking your awareness bracelet. It can be you in an action shot. You have free reign. Just know that your photo will be added online to the blog. This show of support and solidarity for Amy and others living with MS is a way for us to contribute and bring awareness to this illness. Thank you again for participating!
(Heather, Michelle, Kim, Julie, Ava, Veronica,Blake)
Thank you to those that answered the call and rocked an MS awareness bracelet. You are appreciated!
Much love,
Marissa
March 12-12-12 Project: The Lesson
I have spent this month learning about Multiple Sclerosis. I have gained a great appreciation for those afflicted with this condition. The strength that one must muster to handle the continuos changing nature of this condition is admirable. I was blessed to interview a fierce advocate in Amy Gurowitz.
Amy shared an important lesson this month. You don’t know what you can deal with until you do.
In 1988, I looked at that list and I thought, “Oh my God, I’m never going to be able to deal with this.” Years later when I looked back at that list, I thought, “Oh my gosh, I’ve dealt with pretty much all these things in some fashion or another, and…wow! I never knew I could do it.”
You just never know what life is going to hand you, and what you can deal with. That’s really empowering, I think, in the long run – to know that you can cope with far more than you thought you could.
Thank you Amy for being open to sharing your life and experience living with MS! I admire you and I am blessed our lives crossed paths.
Much love,
Marissa