All posts by Kgregory

Chronic Fatigue Syndrome !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

, Research, Stanford News, Videos

“This is probably one of the last major diseases we know nothing about”: A look at CFS

“This is probably one of the last major diseases we know nothing about": A look at CFS

Chronic fatigue syndrome affects between 836,000 to 2.5 million people in the United States, and 25 percent of them are confined to their bed. Earlier this year, the Institute of Medicine released a report acknowledging that chronic fatigue syndrome is a real and serious disease and renaming the disorder “systemic exertion intolerance disease” to better reflect its key symptoms.

The current issue of Palo Alto Weekly focuses on the disease and tells the story of local resident Whitney Dafoe, a promising 31-year-old photographer whose career was cut short when he began experiencing crushing fatigue, dizziness, gastrointestinal problems and dramatic weight loss:

Dafoe’s disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he’ll show his gratitude by pointing to his heart, his mother said.

His parents have stuck a few brief messages he’s scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.

“I don’t know what to say. I just feel pretty hopeless about all this. I never get a break from bad things,” he wrote on one note.

“It’s so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful,” another states.

Dafoe, who is also featured in the above video, is the son of Ronald Davis, PhD, a genetics researcher who was instrumental in the Human Genome Project and directs Stanford’s Chronic Fatigue Syndrome Research Center. A second article details how Davis and colleagues are working to better understand the debilitating disease and develop diagnostic tests and treatments:

Davis and his team plan to use technologies developed for the Human Genome Project to sequence the entire genome of chronic fatigue patients, including 1,600 mitochondrial genes, more than 20,000 other genes and control regions that regulate genes. They hope to identify proteins that are found in immune cells, blood and spinal fluid; search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora; and find evidence of autoimmune responses. The research could reveal DNA sequences that are altered in chronic fatigue patients.

The detailed approach is more comprehensive than that of other research, which has only looked at a fraction of the genes, according to the center’s website.

Davis is working with numerous collaborators across many fields, hoping the collaborative effort will attract the best minds in their fields.

“This is probably one of the last major diseases we know nothing about.

This is your last chance to be a pioneer,” he said.The intent of this site is to help others through sharing information Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

 

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Traumatic Brain Injury and Concussion by Dr A.R. Scopelliti

Nov

21

TBI/traumatic brain injury

Concussion, or traumatic brain injury is common among contact sports participants. Concussion has been defined as a condition in which there is a traumatically induced alteration in mental status, with or without an associated loss of consciousness. In reviewing the scope of symptoms of actual concussion patients, further specificity can be discussed. Dizziness or vertigo is an erroneous perception of self motion or perception of environmental motion and of gravitational orientation. Most patients who have suffered a concussion experience this phenomena of symptomatology. Typically this perception is created through a mismatch between the vestibular, visual and proprioceptive, (sensation of the earth under your feet), systems. Because of the overlap of these systems, they each tend to compensate for deficiencies of the others by design. This is why when the lights suddenly go out, or you suddenly step onto a soft spongy surface such as wet sod from a hard surface such as concrete, the normal brain can quickly compensate by changing between these three systems to prevent falling. TBI does not produce a specific disease entity, rather, it causes a syndrome of mismatches of the stabilizing systems described above, in addition to headache and other symptoms. There is no evidence that medication improves recovery after concussion. Further, research has found that overuse of analgesics following injury may exacerbate concussion-related headaches or make them chronic. The most common treatment recommendations for concussion are rest. But this too has not met with satisfactory results as concussion symptoms commonly continue or worsen. An athlete who has a history of one or more concussions is at greater risk for being diagnosed with another concussion. The first ten days following a concussion appear to be the greatest risk for being diagnosed with another concussion. Second concussions are bad for several reasons. The brain has not yet recovered from the first concussion, so the damage becomes cumulative. Second impact syndromes are often the cause of fatalities in concussions, sports related, (adolescent and pro), or other causes. Although rest initially following a concussion is often advisable, it is not solely the best treatment for concussions. Our office uses the most contemporary and proactive treatment methods in the management of concussion brain injuries. We do this by directly affecting the aforementioned systems of balance for as long as these systems continue to be mismatched, there can be no recovery, and as long as these systems remain mismatched, they will perseverate the other concomitant symptoms associated with concussion and traumatic brain injury. More information on traumatic brain injury and treatment can be found on my website at www.dcneuro.net.

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

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Bono, we need your help.!!!!!!

Celebrity is currency, so I wanted to use mine effectively”- Bono

Bono we really need your help…..

We are speaking on behalf of the millions of people, worldwide, who suffer lifetime’s filled with constant ‘vertigo’ from a little known and very misunderstood disease, known as Meniere’s disease.

Meniere’s disease steals lives, leaving those unable to function as they once did. Many sufferers are reduced to bystanders to their own existence, unable to work, drive, attend family gatherings, or simply play with their kids. Meniere’s causes dizziness, severe vertigo, tinnitus, sensitivity to light and sounds and other normal everyday activities. Meniere’s attacks leave their victims so dizzy and unable to walk or balance, with even the slightest movement bringing hours of nausea and vomiting. If that wasn’t enough, most Meniere’s sufferers develop hearing loss and many go completely deaf.

In the research paper “Impact of Meniere’s Disease on Quality of Life” by the University of California at San Diego, researchers found that the quality of life of Meniere’s patients, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. They further discovered that during periods of ‘acute vertigo’ their quality of life dropped to a point that Meniere’s sufferers were on par with non-institutionalized Alzheimer’s, Cancer and AIDS patients six days from death. Yet, Meniere’s remains relatively unknown and dramatically underfunded when it comes to research dollars.

This is why we are respectfully asking you Bono, and your U2 band mates, to read the thousands of heartbreaking comments below from the petition supporters and consider helping us to ‘raise awareness’ about this debilitating disorder. We are asking for a simple (filmed) statement before you sing your song, “Vertigo” during your 2015 concert tour: “We need to find a cure ‘now’ for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s disease” or a similar statement would be wonderful.

Or, if more acceptable, a public service video made by yourselves for ‘you tube’ that addresses Meniere’s disease helping to spread awareness and hopefully increasing research dollars that will provide better treatments and ultimately a cure.

 

Please do this ‘for us’ and thank you!

 

 Supporters:

Dr. Jose A Lopez-Escamez MD PhD

Our Meniere’s Awareness petition has received the support of the prominent Meniere’s researcher, Dr. Jose A Lopez-Escamez who’s research team in Genyo, Granada, Spain has identified the  ‘first genes’ causing familial Meniere’s disease. We welcome Dr. Lopez- Escamez’s support and commend his work, which brings those who suffer from Meniere’s disease, one step closer to a cure.

For more information regarding the work of Dr. Jose A Lopez-Escamez MD PhD at the University of Granada · Otology & Neurotology

http://www.genyo.es/en/content/view-research-group?id=5

http://www.genyo.es/en ;

The Vestibular Disorders Association

VEDA’s Mission is to inform, support, and advocate for the vestibular community. VEDA envisions a global community where vestibular disorders are widely recognized, rapidly diagnosed, and effectively treated. VEDA recognizes their responsibility to be a champion for the vestibular community and to achieve measurable results. VEDA serves all people with vestibular disorders with dedication, understanding and compassion.

http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders

 

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Impact of Chronic Illness on Relationships !!!!!!!

Impact of Chronic Illness upon Relationships and Social Activity

Ways to Maintain Healthy Relationships & Social Activity Despite the Challenges of Living with Chronic Illness

Chronic illness impacts every aspect of life, including relationships and social activity.  The unpredictability of symptoms and fatigue makes it especially difficult to stay social.  Friends, family, partners, caregivers, etc. must also adjust to a “new normal” as they walk alongside someone with a chronic illness.  At a recent support group meeting, we discussed ways to maintain healthy, supportive, and fulfilling relationships with loved ones despite the challenges of living with a chronic vestibular or balance disorder.

These articles offer valuable insight and helpful tips for the chronically ill as well as suggestions for loved ones and caregivers:

How to Cope When Chronic Pain (Illness) Affects Friends, Family & Social Life

7 Ways to Keep Your Relationship Strong Despite a Chronic Illness

Supporting Relationships Through Chronic Illness

3 Things the Chronically Ill Wish Their Loved Ones Knew

Free eBook: Chronic Illness & Friendship

Chronic Illness and Friendship Resources (Click to download PDF)

52 Ways to Encourage a Chronically Ill Friend (Click to download PDF)

How to Help a Sick Friend (Click to download PDF)

What Those with Chronic Pain or Illness DO Want to Hear

10 Things You Should Say to Someone with A Chronic Illness

15 Things Not to Say to Someone With A Chronic Illness or Invisible Illness

What Those with Chronic Pain or Illness DON’T Want to Hear

Part 2: What the Chronically Ill DON”T Want to Hear

How to Help Your Caregiver

A Not-To-Do List for Caregivers of the Chronically Ill

The Spoon Theory

 

© Copyright 2015, Seattle Dizzy Gro

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

 

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Bracing for the Setbacks of Traumatic Brain Injury !!!!!

Bracing for the Setbacks

Comments [12]

September 22, 2014

Bracing for the Setbacks

TC, Jack, and Abby Maslin

I’ll admit it: I got comfortable. Life was finally beginning to settle after the tumultuous, exhausting ride of the past few years. I was fulfilling my lifetime dream of getting yoga certified (in Greece no less!) and with a little distance from my day-to-day life, I began to relax. I stopped hiding my cell phone under my yoga mat during class, telling myself the days of daily emergency phone calls were behind me. I was in beautiful Santorini for heaven’s sake! And in just a few days my husband, TC, was going travel by himself — for the first time since his injury — across an ocean to meet me for 10 glorious days of a seriously postponed honeymoon. Life would have to cut the Maslins some slack. If only for a month.

But, as we in the TBI world know all too well, that’s not how it works. Brain injury doesn’t go away just because you decide to go away. So when I got the call from home that TC had been hospitalized after a series of seizures, I was surprised by my own reaction. My mind immediately returned to that day two years ago, the day everything fell apart. I envisioned myself as I was that horrific day — shaking and sobbing uncontrollably in the waiting room, wondering if I would be a widow, whether my son would grow up without a father. The same fears suddenly flooded my brain. It was an extreme reaction to a situation far less severe, but a reaction rooted in one terribly traumatic experience.

Logically, TC and I have always known to expect setbacks. Living with a traumatic brain injury means acknowledging the potential arrival of any number of health consequences. But this series of seizures was the first real setback since TC’s injury and I guess we thought we were in the clear, at least as far as seizures were concerned. To be honest, I try not to think too far into the future most of the time. I don’t really want to know what TBI looks like 20 or 30 years down the road. There’s nothing I can do in the present to change that aspect of our future reality, so I try hard not to feed those particular anxieties.

But, wow, did this setback catch me off-guard. It caught TC off-guard too, sinking us both into a mild depression that lasted for several weeks. We were incredibly disappointed, of course, at having to cancel a trip we’ve been trying to take for five years, but we were mainly upset by the prospect that so much hard work could suddenly be wiped out by something outside of our control.

Fortunately, TC has made a very nice recovery in the past month and with the exception of our canceled trip, life has returned to the “new normal.” But this experience has certainly given me pause. It’s hard to trust a universe that is so inherently unstable. It’s hard to feel safe in a life that has unfolded so differently from our plans. And the reality is that those feelings are just one part of the TBI experience. Without a whole lot of wisdom to impart on the subject of setbacks, I’d like to simply offer the following suggestions:

Call in your reserves.
When you encounter a setback — no matter how big or small — it is absolutely the time to call in reinforcement. For me, support came in the form of the breathing and meditation techniques I had been practicing in the weeks before. Sitting quietly as I drew awareness to my own breath forced me to stay present and keep my mind from worrying far into the future. For others, it may be phoning that one friend or family member who really “gets” it when you’re having a down day, or perhaps reaching out to an acquaintance in the TBI community. If I’ve learned anything, it’s that there are plenty of folks in the TBI network who are here for each other.

Prepare for possible post-setback depression.
Friends who have experienced other forms of chronic illness have also reported a similar type of mild depression following a health setback. I feel pretty good about how TC and I handled our sadness during this most recent experience. After acknowledging our disappointment, fears, and frustration, we spent a few days just living in those feelings. We watched comforting old movies, kept to ourselves a bit, and tried to take it really easy. After a few days of hibernating, we were ready to face the world again and the depressive feelings began to fade. It’s so important to monitor these feelings, however. Mild depression may not necessarily just go away, and staying honest about your mental health is critical. For many of us in the TBI world, depression seems to be constantly looming in the background. Be honest. Ask for help. I can’t reiterate those points strongly enough.

Setbacks stink, and while I wish I could look into my crystal ball in order to navigate the waters ahead, I recognize that setbacks are a natural part of the TBI landscape. Our world is up and it’s down and it’s often exhausting, but I am learning to appreciate and revel in every moment of quiet and calm.

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

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Welcome to Invisible me, Invisible you !!!!!!

This is my new site!!!! Thank you to Paul M Van dort for  building this new site that is also responsive.  This means you can see this site on I phones, I pads, laptops and computers.  This will make it easier for everyone to access my page.   The Invisible me, Invisible you is a site is dedicated to people with invisible illnesses, this could be Autoimmune disease, Vestibular disorders, or any illness you can’t see on the outside.  Hopefully patients with invisible illnesses can get some understanding from family, friends, co-worker and Doctor’s  understand what the effects of what invisible illnesses has on patients with these diseases both mentally and physically.

Kelly

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

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