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Bravelets fundraiser.

My name is Kelly Suiter Helsel and I suffer from Autoimmune disease,
Vestibular disorders which has cause deafness, sounds in my head that
could range from tinnitus, white noise, fingernails on a chalk board,
screeching and these sounds don’t sleep.  It has caused me to be
considered unhireable due to tripping, falling, and the Vertigo drop,
this is when I fall for no reason and no warning, It has affected my
eye site, my cognitive thinking, I also suffer from consistent Vertigo
which is the feeling of being on a tilt a whirl that never ends.  The
added plus is I also get nausea, vomiting, headaches, head pressure.
This letter is not to have a  pity party for myself, but to raise
awareness to this disease, This disease is one of the most
misdiagnosed diseases out there and takes the longest to be diagnosed
properly, It has the highest divorce rate and suicide rate.  My life
has been changed for ever, but I have chosen to take the road of
bringing awareness to others so maybe they wouldn’t get as bad as me
and looking forward to cochlear implants in the future.  Getting
patients to the right Doctor at the beginning and supporting others
with this disease so we are not alone.  I have started a support group
in Reno called the Vestibular  Association of Northern NV.  We meet
one a month and that has been such a learning experience and the best
gift ever.  I have 1 blog called InvisiblemeInvisibleyou.com and 1
facebook page called Vestibular Association of Northern NV.  There is
a lot of information being shared on both these pages, I have tried to
separate the themes of them just to make it easier for patients to get
what they need.   So please help me spread the word, invite them to my
pages and if possible buy some type of jewelry to help fundraise for
the Vestibuar Association also called VEDA a non-profit that guides
patients to local Doctor’s, education and now a has a full panel of
Doctors helping get patients to the right place.

Thank you for listening, spreading the word and contributing if you can.

https://www.bravelets.com/bravepage/autoimmune-disease-of-the-ear

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Barbara A Suiter

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Childhood Distrupted by Donna Jackson Nakazawa

“My goal is to help those suffering from chronic conditions better understand the intersection between our neurobiology, immunology and the deepest inner workings of the human heart — and to use that understanding to embark on a transformation to healing.” —Donna Jackson Nakazawa Donna Jackson Nakazawa has just published a book “Childhood Disrupted- How Biography Becomes Biology” that illuminates the effects “childhood trauma” can have on health. She knows whereof she writes. Her fathers death during her teenage years probably set her up for a paralyzing attack of an autoimmune disorder called Guillain-Barre Syndrome decades later. crisis situation Adversity – in whatever form – during childhood can have long-term consequences. The effects of childhood trauma on illness later in life are controversial but they shouldn’t be – the science is well-established. Mix together childhood trauma and illness, though, and the results can be explosive. Blame or guilt sometimes gets introduced but this is not about coping – it’s about the sometimes inevitable physiological consequences of being exposed to adverse situations. Like any predisposing factor none of these events guarantee disaster – they just heighten the possibility it will happen. You don’t need to have a difficult childhood to have a screwed up immune system either. My ACE score is low: I got ME/CFS another way, but some cases of ME/CFS and FM surely got their start in childhood. It goes something like this: a period of stress – whether from an infection, an emotionally difficult situation or whatever – puts stress chemical production on a hair-trigger – permanently. Nothing obvious happens for many years but subtle homeostatic shifts are continually eroding the resilience of important systems. Ten, twenty, thirty years later some kind of threat – a toxin, a pathogen or some other stressor – breaks the camel’s back and a pathological state takes over. A new normal is established. immune system The immune system is heavily involved. A key takeway for ME/CFS and FM patients? It’s likely the immune system at work and that makes sense. The immune system jumps in during any stressful situation and it’s got a photographic memory. However your immune system got upset (childhood adversity, a later infection or both) Donna Jackson Nakazawa’s description of the process that occurs suggests she’s hitting on something that contributes to ME/CFS and FM. When a child faces chronic and unpredictable stressors their developing body and brain become routinely flooded with inflammatory stress chemicals that alter the expression of genes that control stress hormone output, triggering an overactive inflammatory stress response for life. When these changes occur in genes that should regulate a healthy stress response, a child’s inflammatory stress response becomes reset to “on” for life – and the brakes that should turn that stress response off don’t work. These epigenetic changes predispose an individual to lifelong inflammation and turn on genes associated with developing a range of adult diseases. As an adult, if we find ourselves overreacting to stressors in our life with a heightened stress response – an argument with our spouse, a bill we weren’t expecting, a car that swerves in front of us on the highway – our inflammatory response stays on high, and this leads to physical disease and neuroinflammation, and mental health disorders. Donna Jackson Nakazawa GET OUR FREE ME/CFS AND FIBROMYALGIA INFO New-postsLike the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here. Doing Something About It What can be done about this? Anything that takes the stress response off it’s hair trigger and reduces inflammation can be helpful. For some people it might be diet or immune modulating drugs or mind/body work. A years focus on mind/body techniques enabled Donna to bring her immune test results to normal, reduce her prescription drug needs and reduce her symptoms markedly. She wasn’t back to normal – two bouts of Guillaine-Barre Syndrome probably make that impossible – but her health was stunningly improved. She described her efforts in the The Last Best Cure – a book we’re following on Health Rising. With Donna’s new book hitting the shelves today let’s take this opportunity to take the Adverse Childhood Experiences (ACE) test. Simply collect your score at the end and tell us where you fit in the poll below. (All answers are anonymous). The Adverse Childhood Experiences (ACE) Test While you were growing up, during your first 18 years of life did a parent or other adult in the household often or very often…swear at you, insult you, put you down, or humiliate you? or act in a way that made you afraid that you might be physically hurt? If yes enter 1 ________ 2. Did a parent or other adult in the household often or very often…push, grab, slap, or throw something at you? or ever hit you so hard that you had marks or were injured? If yes enter 1 ________ Did an adult or person at least 5 years older than you ever…touch or fondle you or have you touch their body in a sexual way or attempt or actually have oral, anal, or vaginal intercourse with you? If yes enter 1 ________ Did you often or very often feel that …no one in your family loved you or thought you were important or special or your family didn’t look out for each other, feel close to each other, or support each other? If yes enter 1 ________ Did you often or very often feel that …you didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or your parents were too drunk or high to take care of you or take you to the doctor if you needed it? If yes enter 1 ________ Were your parents ever separated or divorced? If yes enter 1 _______ Was your mother or stepmother often or very often pushed, grabbed, slapped, or had something thrown at her or sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard or ever repeatedly hit at least a few minutes or threatened with a gun or knife?

Read more: Childhood Disrupted – How Biography Becomes Biology: the Fibromyalgia and ME/CFS ACE Poll http://www.cortjohnson.org/blog/2015/07/07/childhood-disrupted-how-biography-becomes-biology-the-fibromyalgia-and-mecfs-poll/

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When the consistent sounds of tinnitus and other sounds take over in your head.

The reason I posted this story was because I suffer from the same sounds this gentleman suffered from.  Sometimes 1-5 different sounds, and try to concentrate with that going on.  That’s why the illness has a higher suicide rate, imagine no peace in your head, constant noises that make you want to go crazy and you cant sleep, just because you want to sleep doesn’t mean the sounds sleep.  Here is one mans story.  So sad.

Body of father who told his family tinnitus was driving him crazy is found at foot of 60ft fall in disused quarry

  • James Jones, 58, had suffered with tinnitus for the past six months
  • He vanished from Llandudno home and was found dead in nearby quarry
  • Boat skipper also suffered from hyperacusis where even the sound of a plastic bag rustling would cause him great pain
  • Son Danny says noises had left him feeling anxious and depressed
The body of James Jones, 58, who told his family that he was tormented by tinnitus, was discovered at the foot of a disused quarry near his home

The body of James Jones, 58, who told his family that he was tormented by tinnitus, was discovered at the foot of a disused quarry near his home

The body of a father who told his family that he was tormented by tinnitus was discovered at the foot of a disused quarry near his home.

James Jones, 58, from Llandudno, North Wales, is believed to have fallen more than 60ft to his death at the Llandulais Quarry.

He had been suffering from tinnitus, a condition which causes a constant ringing in the ears, for six months, and his family said the noises had caused him to become anxious and depressed.

‘It all started with a simple ringing in the ears which slowly crept into his life,’ said his son Danny, 32.

‘Soon after the ringing went to catastrophic disharmonious and painful noises.

‘He had five simultaneous sounds of extreme screeching, whistling, humming, buzzing and roaring every second of every day.

‘This along with little or no sleep can send anyone into despair.’

Mr Jones, a boat skipper who would ferry engineers out to marine windfarms off the Welsh coast, had been an easy-going family man before his life was blighted by the incurable condition which affects up to six million people in the UK, his son said.

He was also diagnosed with hyperacusis, a condition where even soft background noises become deafening.

‘Even the rustling sound of a plastic bag was painful for him,’ said Danny.

‘It made him withdraw from social and professional activities and my dad became isolated, anxious, stressed and depressed

Earlier this month, Mr Jones had vanished from his home. On July 9, he was found dead by police at the quarry.

An inquest has been opened and adjourned by the North Wales coroner.

Tinnitus is more common in people aged over 65, but it can strike at any age.

There is no single treatment for the condition and research to find a cure is ongoing.

Mr Jones's sons Wesley and Danny, pictured with their father and mother, Maria, are raising money for research into tinnitus

Mr Jones’s sons Wesley and Danny, pictured with their father and mother, Maria, are raising money for research into tinnitus

The charity Action on Hearing Loss describe it as an ‘invisible condition’ which can cause depression, anxiety and sleep problems.

Now Mr Jones’s family have launched a campaign in his memory to raise funds for research into tinnitus, and Danny and his brother Wesley hope to make £5,000 for charities including the British Tinnitus Association.

Mr Jones was due to be his son’s best man at his wedding next year.

‘He was a true gentleman, who was wise beyond belief,’ Danny wrote on Facebook.

‘He taught me everything I know, we shared the same thoughts, goals and ambitions. We were that close he wasn’t just my Dad.

‘He was also my business partner, my mentor, my best mate and my best man to be.’

CONSTANT RINGING AND NOISE: WHAT IS TINNITUS?

Tinnitus is the perception of sound in the ear, usually a ringing noise, although it can be a high-pitched whistling or buzzing, ringing, or hissing.

It’s estimated that seven per cent of men and women will visit their GP about it at some point.

For one in 100 sufferers, quality of life is severely affected, and it has been linked to depression, work and relationship problems and, in rare cases, suicide.

It’s not known what causes it, although in some cases it is linked to hearing loss – one theory is that when some sounds can no longer be heard, the brain overcompensates and creates phantom noise.

There is no cure, although treatments such as maskers (ear-plugs that generate white noise to try to block out tinnitus noise), antidepressants, and cognitive behavioural therapy, which aims to help patients to ignore or think differently about their tinnitus, can help.

Tinnitus is often worse in quite environments so some people benefit from listening to soothing sounds, such as the sound of the ocean.

The condition is most common in people over the age of 65 but it can affect people of all ages.

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Music for Neurologic Therapy.

Local Men Using Music as Neurologic Therapy

Traumatic brain injuries and strokes affect two and a half million people in the country, according to MedRhythms’ website.

Brian Harris, a Howland man and his UMaine fraternity brother are using music as medicine in Boston. Their company, MedRhythms, is just over a year old, but they are revolutionizing the medical landscape in neurologic therapy.

The gift of song can sometimes bring back more than a memory. And when used as therapy, music can bring back language or movement in people who have suffered a brain injury or another neurologic disorder. This type of healing is gaining traction in the medical world.

“What we’ve seen is sometimes this is the only thing that works,” said Harris.

Harris completed his undergraduate studies at UMaine where he assisted during his first music therapy sessions. It was then that he discovered his true calling.

“When I found this, I felt very fortunate to be so young and to feel like this really was what I wanted to do, but it was really the perfect synthesis of my two passions,” said Harris.

So Harris and his business partner Owen McCarthy founded MedRhythms, a one-year-old Boston company that partners with local hospitals, but is expanding to make this type of cutting-edge care available to everyone.

“We’ve always known that music has an effect, but this is one of the first times where we can quantify it and say ‘This is how much better someone gets,’” said McCarthy.

Harris uses one method, called Melodic Intonation Therapy, on patients who can’t speak. It looks like singing. He’s learned to harness the power of a pattern.

“Music has a profound effect on the human brain and that there’s no other stimulus on earth that engages our brain like music does,” said Harris.

Right now, only people who go through top rehab hospitals or have the means to pay for in-home care can receive their music therapy. MedRhythms’ mission is to make it a standard of care, so people getting physical, speech, or occupational rehab can also receive the healing treatment that music provides.

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