Thursday, December 25, 2014

Merry Christmas! !

Wednesday, October 15, 2014

Chronic Illness Symptom Cycle...Add your own experience to the Cycle

Right now I am stuck in the seemingly endless cycle of chronic illness symptoms and of course once you feel better... you do too much and then you chance triggering the cycle all over again. Being aware of this cycle and how your particular diseases work helps to understand and work with those symptoms. 
Would you add anything to this picture? 
Where does our emotional state fit in the cycle? 
How does our outside environment effect the cycle?
From: ButYouDontLookSick Fb post 


Thursday, October 9, 2014

What are you thankful for?.....Build your own Sunshine of blessings

 I love this sunshine of blessings!
I am thankful that my husband still loves me; an awesome stepson; great friends and family; awesome doctors; knowing how to manage my illness....









From: Invisible Illness Awareness Week FB post 10/9/14








Friday, September 5, 2014

Awareness....


Awareness...


Awareness...


Hydrocephalus Awareness Month


Reacting to personal setbacks: Do you bounce back or give up?





Sometimes when people get upsetting news – such as a failing exam grade or a negative job review – they decide instantly to do better the next time. In other situations that are equally disappointing, the same people may feel inclined to just give up. How can similar setbacks produce such different reactions? It may come down to how much control we feel we have over what happened, according to new research from Rutgers University-Newark. The study, published in the journal Neuron, also finds that when these setbacks occur, the level of control we perceive may even determine which of two distinct parts of the brain will handle the crisis. "Think of the student who failed an exam," says Jamil Bhanji, a postdoctoral fellow at Rutgers and one of the study's co-authors. "They might feel they wouldn't have failed if they had studied harder, studied differently – something under their control." That student, Bhanji says, resolves to try new study habits and work hard toward acing the next exam. Functional magnetic resonance imaging (fMRI) used in the study showed activity in a part of the brain called the ventral striatum – which has been shown to guide goals based on prior experiences. A different student might have failed the same test, but believes it happened because the questions were unfair or the professor was mean, things that he could not control. The negative emotions produced by this uncontrollable setback may cause the student to drop the course. Overcoming those emotions and refocusing on doing well in the class may require a more complicated thought process. In cases like this, fMRI revealed that activity in the ventromedial prefrontal cortex (vmPFC), a part of the brain that regulates emotions in more flexible ways, is necessary to promote persistence.

- See more at: http://www.neuroscientistnews.com/research-news/reacting-personal-setbacks-do-you-bounce-back-or-give#sthash.ihi1IEXr.dpuf



Researchers unlock new mechanism in pain management September 4, 2014 | by Editor





Pain and touch sensory fibres in a neonatal dorsal root ganglion. Credit: Simon Beggs / Wellcome Images - See more at: http://www.neuroscientistnews.com/research-news/researchers-unlock-new-mechanism-pain-management#sthash.94am7x8h.dpuf


It's in the brain where we perceive the unpleasant sensations of pain, and researchers have long been examining how calcium channels in the brain and peripheral nervous system contribute to the development of chronic pain conditions. Neuroscientist Gerald Zamponi, PhD, and his team at the University of Calgary’s Hotchkiss Brain Institute have discovered a new mechanism that can reverse chronic pain. Using an animal model, their research has found that pain signals in nerve cells can be shut off by interfering with the communication of a specific enzyme with calcium channels, a group of important proteins that control nerve impulses. Their Canadian Institutes of Health Research-funded study was published in the September issue of Neuron — one of the most influential journals in the field of neuroscience. Zamponi is now applying his research and partnering with the Centre for Drug Research and Development (CDRD) in Vancouver to develop a drug that could one day improve the lives of those with inflammatory pain such as arthritis, irritable bowel disease or neuropathic pain. Their approach may be able to reduce the pain associated with these conditions. Opening the door to new treatments “Chronic pain can be a debilitating condition that affects many people and is often poorly controlled by currently available treatments.  Therefore, new treatment avenues are needed. Our discovery opens the door towards new treatments, and based on the data that we have so far, it is a viable strategy,” says Zamponi, the lead author of the study and senior associate dean of research at the Cumming School of Medicine.

 - See more at: http://www.neuroscientistnews.com/research-news/researchers-unlock-new-mechanism-pain-management#sthash.94am7x8h.dpuf

Wednesday, September 3, 2014

#Hydrocephalus does not discriminate. It affects all ages, races, gender, and ethnicities. Share this photo to raise awareness. #HydrocephalusAwareness #HAM2014


Research hints at why stress is more devastating for some September 2, 2014 | by Editor

A key step in how stress produces anxiety- and depression-like behaviors in mice is the loss of acetyl groups attached to histones. The spots above represent acetylated histones in the hippocampus. Credit: The Rockefeller University



Some people take stress in stride; others are done in by it. New research at Rockefeller University has identified the molecular mechanisms of this so-called stress gap in mice with very similar genetic backgrounds — a finding that could lead researchers to better understand the development of psychiatric disorders such as anxiety and depression. “Like people, each animal has unique experiences as it goes through its life. And we suspect that these life experiences can alter the expression of genes, and as a result, affect an animal’s susceptibility to stress,” says senior author Bruce McEwen, Alfred E. Mirsky Professor and head of the Harold and Margaret Milliken Hatch Laboratory of Neuroendocrinology. “We have taken an important step toward explaining the molecular origins of this stress gap by showing that inbred mice react differently to stress, with some developing behaviors that resemble anxiety and depression, and others remaining resilient.” The results, published September 2 in Molecular Psychiatry, point toward potential new markers to aid the diagnosis of stress-related disorders, such as anxiety and depression, and a promising route to the development of new treatments for these devastating disorders. - 

See more at: http://www.neuroscientistnews.com/research-news/research-hints-why-stress-more-devastating-some#sthash.jv4xN6JZ.dpuf

Hydrocephalus September is Awareness Month!


I Am Just One


Thursday, August 28, 2014

Train Your Heart To Protect Your Mind...Neuroscience Research

New research in the Neurobiology of Aging reveals that maintaining cardiovascular health is a key aspect of maintaining brain health during the aging process. Researchers at the University of Montreal measured physical fitness in two groups of people: young adults ages 18-30, and older adults aged between 55 and 75. They also had their brains and bodies scanned by MRI to measure blood flow, brain activity, and to measure the health of their aorta. The researchers found that physical fitness could help slow age-related cognitive decline, and that a healthier aorta corresponded with healthier brain vasculature. These results support the idea that lifestyle factors play an important role in the aging process.

Read more here:
http://www.nouvelles.umontreal.ca/udem-news/news/20140825-train-your-heart-to-protect-your-mind.html

The Power of Vulnerability...TED Talk

Brené Brown studies human connection — our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity. A talk to share.
Watch here:
https://www.ted.com/talks/brene_brown_on_vulnerability?awesm=on.ted.com_a0Nt3&utm_campaign=&utm_source=facebook.com&utm_content=awesm-publisher&utm_medium=on.ted.com-facebook-share

Monday, August 18, 2014

Forgiveness

Forgiveness...
“The willingness to forgive is a sign of spiritual and emotional maturity. It is one of the great virtues to which we all should aspire. Imagine a world filled with individuals willing both to apologize and to accept an apology. Is there any problem that could not be solved among people who possessed the humility and largeness of spirit and soul to do either -- or both -- when needed.”

― Gordon B. Hinckley

Thursday, August 7, 2014

Truth to Power...

"Darkness cannot drive out darkness, only light can do that. Hate cannot drive out hate, only love can do that
--ML King, Jr



Yesterday is dead, tomorrow hasn't arrived yet. I have just one day... TODAY, and I'm going to be happy in it
--Groucho Marx

Tuesday, August 5, 2014

Invaluable Life's Messages...

Invaluable Life's Messages:

Life becomes easier when you learn to accept the apology you never got...Robert Brault

The only way out is through...

The path of least resistance just makes the road longer
Sometimes you have to head straight on into the pain to come out on the other side...

The loss of love is not nearly as painful as our resistance to accepting it is...

Tuesday, April 22, 2014

New way to enhance nerve growth following injury discovered April 22, 2014 | by Editor - See more at: http://www.neuroscientistnews.com/research-news/new-way-enhance-nerve-growth-following-injury-discovered#sthash.fS6iYDZZ.dpuf

New research published today out of the University of Calgary's Hotchkiss Brain Institute (HBI) uncovers a mechanism to promote growth in damaged nerve cells as a means to restore connections after injury. Dr. Doug Zochodne and his team have discovered a key molecule that directly regulates nerve cell growth in the damaged nervous system. His study was published in the prestigious journal Nature Communications, with lead authors Drs. Kim Christie and Anand Krishnan.
"We made the surprising discovery that a protein called Retinoblastoma (Rb) is present in adult neurons," explains Zochodne. "This protein appears to normally act as a brake – preventing nerve growth. What we have shown is that by inactivating Rb, we can release the brake and coax nerves to grow much faster," says Zochodne, a professor in the Department of Clinical Neurosciences.
Zochodne and his team decided to look for Rb in nerve cells because of its known role in regulating cell growth elsewhere in the body.
- See more at: http://www.neuroscientistnews.com/research-news/new-way-enhance-nerve-growth-following-injury-discovered#sthash.fS6iYDZZ.dpuf


Read more here:

http://www.neuroscientistnews.com/research-news/new-way-enhance-nerve-growth-following-injury-discovered

Wednesday, April 16, 2014

Task-Specific and General Cognitive Effects in Chiari Malformation Type I Philip A. Allen mail, James R. Houston, Joshua W. Pollock, Christopher Buzzelli, Xuan Li, A. Katherine Harrington, Bryn A. Martin, Francis Loth, Mei-Ching Lien, Jahangir Maleki, Mark G. Luciano Published: April 15, 2014DOI: 10.1371/journal.pone.0094844

Abstract

Objective

Our objective was to use episodic memory and executive function tests to determine whether or not Chiari Malformation Type I (CM) patients experience cognitive dysfunction.

Background

CM is a neurological syndrome in which the cerebellum descends into the cervical spine causing neural compression, severe headaches, neck pain, and number of other physical symptoms. While primarily a disorder of the cervico-medullary junction, both clinicians and researchers have suspected deficits in higher-level cognitive function.

Design and Methods


We tested 24 CM patients who had undergone decompression neurosurgery and 24 age- and education-matched controls on measures of immediate and delayed episodic memory, as well as three measures of executive function
For the results and more:
http://www.plosone.org/article/info%3Adoi/10.1371/journal.pone.0094844

Tuesday, April 1, 2014

Conquer Chiari Research Center

Our research team is using computer simulations to help understand Chiari Malformation. The picture below shows a 3D reconstruction of the fluid space around the spinal cord for a healthy subject and a Chiari patient. The green colored structures are spinal cord nerve roots. Can you guess which one is a Chiari patient (left or right)?

Gosh, you are all so smart! Yes, right is a Chiari patient. In fact, the reconstruction is for a 4 year old child with Chiari (~8 mm tonsil descent below the foramen magnum)





Monday, March 31, 2014

My Choice

Yesterday I posted a great piece about how having a chronic illness can change you or NOT?!
I have been thinking since then how my illness changed me...and it has in a lot of significant ways.
I am less guarded about my personal life...Some days I will tell a total stranger about my daily struggles.  I find it therapeutic to talk about it with strangers than with friends and family because I am always, always so afraid that I am burdening them...and I just couldn't live knowing that  I am burdening them.  So telling it to a willing listening ear whom I wont see again makes sense to me.
I do not alert my family about my daily pains or other issues unless it's very, very bad and/or it's something new.

"We must accept finite disappointment, but never lose infinite hope." - Martin Luther King, Jr

I look forward to each day with a lot of enthusiasm...simply because it's another day that I there for...I appreciate and enjoy every single day!  Even if I sit on the sofa watching television because I am in so much pain and can't do anything else.  

I am more forgiving...I came to the conclusion that it's not worth the stress and being at peace is a much better option. Plus my symptoms are worse when I am stressed.   People who don't have a chronic ill should try it too...you'll find that it's way better for your health.  Sometimes people don't quite get it when I say "I don't want to fight anymore"  I guess because it's not a normal thing people say and actually mean it??

Thankfully I was never the one to feel lonely when I am by myself, most days I am alone ... like today it rained, sleet and snowed all day. Several people kept in touch with me to make sure I was ok though.

One great thing about illness is that I get to see and experience the goodness in people. Strangers, friends, family...it is so heartwarming to see the effort and the extent people will go to help and comfort me.  

I am not as embarrassed as I use to be to eat out... I am right handed but due to the tremors and severe weakness I have started using my left hand to eat and do a lot of other stuff. My left side is now showing the wear and tear of constant use and now I have minor tremors and sometimes severe pain' but I am not letting it bother me.  Just the other day while I was in the lady's room my husband got me soup at a restaurant.  I almost said I don't drink soup in public anymore but I thought it was such a kind jester that I sat and enjoyed it and didn't care if anyone though me odd in anyway when my head was bent over and close to the bowl to avoid spills.

Material stuff and lots of money is passe to me... I am happy with just enough to pay the bills, eat out once in a while and maybe a bit of travel.  

I volunteer for a few hours at an art gallery and I love it!  I love it because it gives me a sense of independence; I don't need anyone to drive me to there because it's a minute from my home; I am surrounded by beautiful interesting art!   What could be better??

I do have my moments when I feel totally defeated....When my mind tells me I can walk this far but I really can't; when I attempt to reach for something and can't because my arm is stuck at my side and wont move; when I move too fast and feel the damming effects; when I am treated like a burden rather than a whole person..."no you can't go because what if you get sick I wont have time to take care of you"; when it's slippery outside and I can't walk by myself and need help...
I could go on and on but I do my best to have less of those days...it is mostly the choice I make not to be 'down' but sometime as human I have to give myself that release and feel sorry for myself and then make the big effort and the choice to get back on track and not to lose hope.

I work very hard every single day to feel normal, but I know the other "good old days' are behind me .... the best is yet to come...it's my choice... to be grateful and make the best of every single day!  










Thursday, March 27, 2014

Migraine Attacks Increase Following Stress “Let-Down”

New Research Published in Neurology Explores Impact of Stress Reduction on Migraine Attacks 
NEW YORK (March 26, 2014) – Migraine sufferers who experienced reduced stress from one day to the next are at significantly increased risk of migraine onset on the subsequent day, according to a new study conducted by researchers at the Montefiore Headache Center and Albert Einstein College of Medicine at Yeshiva University. Stress has long been believed to be a common headache trigger. In this study, researchers found that relaxation following heightened stress was an even more significant trigger for migraine attacks. Findings may aid in recommending preventive treatments and behavioral interventions. The study was published online today in Neurology®the medical journal of the American Academy of Neurology. 
Migraine is a chronic condition that affects approximately 38 million Americans. To examine headache triggers, investigators at the Montefiore Headache Center and Einstein conducted a three month electronic daily diary study which captured 2,011 diary records and 110 eligible migraine attacks in 17 participants. The study compared levels of stress and reduction in stress as predictors of headache. 
“This study demonstrates a striking association between reduction in perceived stress and the occurrence of migraine headaches,” said study lead author Richard B. Lipton, M.D., director, Montefiore Headache Center, professor and vice chair of neurology and the Edwin S. Lowe Chair in Neurology, Einstein. “Results were strongest during the first six hours where decline in stress was associated with a nearly five-fold increased risk of migraine onset. The hormone cortisol, which rises during times of stress and reduces pain, may contribute to the triggering of headache during periods of relaxation.” 
To continue reading: http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=1128

Monday, March 24, 2014

From The March 18, 2014 Facebook post of Conquer Chiari Research Center

Today in the lab we are making 3D printed models of the spinal cord and brain (cerebellum). These models will be flown to a medical center in Germany next week to help us develop and test a new MRI sequence for 3D CSF flow measurement in Chiari patients. This type of MRI measurement has potential to provide the most detail about CSF motion in Chiari patients. Sincere thanks to American Syringomyelia & Chiari Alliance Project for funding this groundbreaking research.

Photo: Today in the lab we are making 3D printed models of the spinal cord and brain (cerebellum).  These models will be flown to a medical center in Germany next week to help us develop and test a new MRI sequence for 3D CSF flow measurement in Chiari patients.  This type of MRI measurement has potential to provide the most detail about CSF motion in Chiari patients.  Sincere thanks to American Syringomyelia & Chiari Alliance Project for funding this groundbreaking research.



Olympian: Brain disorder made me stronger By Julia Clukey, Special to CNN

Editor's note: In The Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle -- injury, illness or other hardship -- they tapped their inner strength and found resilience they didn't know they possessed. This week we meet Julia Clukey, who made the 2010 U.S. Olympic team in luge and is the first alternate for the 2014 team in Sochi. Off the ice, she's faced many challenges, including surviving brain surgery.
(CNN) -- When I was first diagnosed with Arnold-Chiari malformation-- a brain disorder involving structural defects -- I was shocked.
After learning more about it, and then after successful surgery in 2011, I realized that I could emerge a stronger person, both mentally and physically.
Today I am able to continue to compete at the highest level in the sport of luge and continue to live life to the fullest. I remain committed to my sport as well as to sharing my story about overcoming challenges.
During my surgery, and in times of adversity, the most important thing for me has been the support of my awesome family and friends.
I had a new outlook on the sport when I returned to competition in 2012. While I knew my ACM was never going to be gone completely, I was healthier than I had ever been and ready to see what I could do as an athlete, free of my symptoms.
Read more here:http://www.cnn.com/2014/01/15/health/human-factor-clukey/index.html

Thursday, February 20, 2014

Toddler And Dog With Same Brain Condition Find A Friend In Each Other... Hydrocephalus

puppy


Dylan Lipton-Lesser is eager to walk his new friend, a 9-month-old rescue dog named Frank.
Dylan, 2, and Frank, a Chihuahua-dachshund mix, met two weeks ago. They were introduced because they both have hydrocephalus, a condition where excessive fluid accumulates in the brain and sometimes causes the skull to expand, according to the National Institute of Neurological Disorders and Stroke.
Dylan, who was featured on The Huffington Post last month when a video of him testing out his new hearing aids went viral, has had 15 brain surgeries, his mother, India Lipton, told HuffPost. Therefore, he's spent a lot of time at the Children's Hospital of Richmond at Virginia Commonwealth University.
That's how he met Frank, whose owner, Stacy Metz is an administrative assistant in the Department of Neurosurgery, according to the Richmond Times-Dispatch.
Metz adopted Frank last August, thanks to the Richmond Animal League (RAL), the organization that had placed the puppy with a foster family after he suffered a seizure at 8 weeks old, putting him at risk for euthanasia, according to the Times-Dispatch.
"We really didn't hesitate [to adopt Frank] because we are fully aware of the condition," Metz told HuffPost. "We wanted the little guy to get a chance on life."
When Dylan's family found out about Frank through a friend, Lipton immediately reached out to Metz. On Feb. 8, the two boys met at the RAL.

Read More Here...http://www.huffingtonpost.com/2014/02/20/dylan-lipton-lesser-frank-the-dog_n_4822726.html?ncid=edlinkusaolp00000009

Tuesday, February 18, 2014

The 9 Essential Habits Of Mentally Strong People

In 1914, Thomas Edison's lab burned down, and years' worth of his work was destroyed. This could easily be described as the worst thing to happen to Edison, but the inventor instead chose to see it as an energizing opportunity that forced him to rebuild and re-examine much of his work. Edison reportedly said at the time, "Thank goodness all our mistakes were burned up. Now we can start again fresh."
"In a world that we don't control, tolerance is obviously an asset," Ryan Holiday, author of the forthcoming The Obstacle Is The Way, told The Huffington Post. "But the ability to find energy and power from what we don't control is an immense competitive advantage."
He's talking about mental strength, a difficult-to-define psychological concept that encompasses emotional intelligence, grit, resilience, self-control, mental toughness and mindfulness. It's something that Edison had in spades, and it's the reason that some people are able to overcome any obstacle, while others crumble at life's daily challenges and frustrations.
The ability to cope with difficult emotions and situations is a significant predictor of our success and happiness. The most capable individuals in this way are able to turn any obstacle into a source of growth and opportunity. And while much has been made of what mentally strong people avoid doing -- things like dwelling on the past, resenting the success of others and feeling sorry for themselves -- what do they actually do? What tactics do they use to overcome adversity time and time again?
"Things that we think are obstacles are actually opportunities to do something," says Holiday. "[To] be rewarded in some way that we never would have expected, provided that we address and don't shirk from that obstacle."
Here are 9 essential habits and practices of mentally strong people that can help you get through any challenge or hardship.
Read more here:
http://www.huffingtonpost.com/2014/02/18/the-9-essential-qualitie_n_4760403.html?ncid=edlinkusaolp00000009

Monday, February 17, 2014

7 Things You Shouldn't Say To Someone With Anxiety


Main Entry Image


If you have ever suffered from severe anxiety, you’re probably overly familiar with the control it can have over your life. And you’re not alone -- it affects approximately 40 million adult Americans per year.
Anxiety and panic disorders can cause ceaseless feelings of fear and uncertainty -- and with that suffering often comes comments that are more hurtful than helpful. According to Scott Bea, clinical psychologist and assistant professor of medicine at the Cleveland Clinic, while it usually comes from a heartfelt place, a lack of understanding from others can make working through a panic attack incredibly challenging.
Read More Here:
http://www.huffingtonpost.com/2014/02/17/things-not-to-say-to-some_n_4781182.html?1392652358&utm_hp_ref=healthy-living#es_share_ended

Monday, February 10, 2014

Rare Disease Day USA February 28, 2014


Handprints Across America

Please help us show the impact of Rare Disease Day across the nation. We invite you to print out this flier with the Rare Disease Day logo and submit a photo of yourself, someone else or a group of people holding it.  The purpose is to show people observing Rare Disease Day in a variety of settings across the nation.  (If you would prefer, you can purchase a Rare Disease Day T-shirt to wear instead of holding the flier.)
Optional:  This year, we are inviting those who submit photos to include very brief (no more than 100 words) text with them.  This isn’t required but is an option for anyone who wishes to add text to the photo.
We will post all submissions in our “Handprints Across America Gallery.” View what has already been submitted.  We’ll also select one to feature each week on the Rare Disease Day US homepage.
- See more at: http://rarediseaseday.us/take-action-now/handprints-across-america/#sthash.4KNYnYHj.dpuf

More here: http://rarediseaseday.us/take-action-now/handprints-across-america/

Sunday, February 9, 2014

Why Are You Always Cold? A Doctor Explains


Katelyn Heindel is always cold.
“In the summertime when it’s 80 degrees, I’m walking around saying I’m freezing,” the 28-year-old told weather.com. “I feel like it’s negative 80 degrees on my hands and feet.” 
Her hands and feet feel frozen so often, she said it got to the point where she was wasting time at work trying to warm them up. Her husband insisted she go to the doctor to get the issue checked out.
The problem: Her body’s natural process of vasoconstriction, or the shunting of blood away from extremities in cold environments, was going haywire, making her feel extreme cold, even pain.

Read more here  (copy and paste to your browser):http://www.weather.com/health/why-women-feel-colder-men-20140204

TED Talks: Elliot Krane: The mystery of chronic pain

We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we're just learning about how it works and how to treat it.


Read and watch more here(copy and paste to your browser): http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain.html

Wednesday, January 15, 2014

Happy New Year!!

Ultrasound May Boost Brain's Performance, Study Finds

Ultrasound may improve sensory perception, according to a new study in humans.
By directing ultrasound to a specific brain area, researchers were able to improve people's ability to discriminate between sensory inputs. Ultrasound is sound far above the upper limit of what humans can hear. It's useful in medical imaging. Doctors and technicians send bursts of ultrasound through tissue and record the echoes, creating a picture of what's inside — whether it's an injured knee or a fetus in utero.
Ultrasound also has potential for mapping the connectivity of the brain. Neuroscientists are particularly interested in understanding how brain areas chat with one another; in fact, a new federal project, the BRAIN Initiative, has the goal of mapping the healthy human brain. [Inside the Brain: A Photo Journey Through Time]
ultrasound brain
Read more here...http://www.huffingtonpost.com/2014/01/13/ultrasound-boost-brain-performance_n_4585635.html?ncid=edlinkusaolp00000009