Neurological Signs And Symptoms of Ankylosing Spondylitis

Ankylosing spondylitis, AS, is a form of spinal arthritis. AS can cause the sacroiliac joint between the spine and hips to fuse. The ribs can also fuse in AS causing breathing difficulty. Although neurological symptoms are rare, notes the Spondylitis Association of America, nerve pain and irritation can result from nerve impingement in the spine and joints.

Cauda Equina Syndrome

Cauda equina syndrome, CES, is a neurological disorder caused by the pinching of the spinal nerves in the lower or lumbar spine. The space between the vertebrae allow the spinal nerves the room to send messages throughout the organs, muscles and tissue of the body. These nerves come together in a canal at the end of the spine. This canal holds bundles of nerve roots that look like a horsetail. This nerve bundle sends and receives messages from the lower portion of the body to the brain. Cauda equina syndrome occurs when these nerves become trapped between the fused vertebrae. This entrapment causes numbness, pain and tingling in the legs and disrupts the functions of pelvic organs such as kidneys, urethra, prostate, large intestines and reproductive organs, according to the Spondylitis Association of America.


Radiculopathy is a nerve root impairment that occurs when groups of nerves become pinched and inflamed at their core. Nerve roots are larger bundles of nerves that branch into smaller nerves covering the body. These impinged nerves do not receive sufficient blood flow and have difficulty conducting messages necessary for organ, and muscle functioning. Symptoms of radiculopathy include muscle control problems, tingling, numbness, weakness and pain in the arms and legs. Lumbar or low back radiculopathy is reported in cauda equina syndrome. Pain resulting from this nerve root impingement may radiate to other parts of the body.

Cervical Myelopathy

Cervical spondylotic myelopathy, CSM, in ankylosing spondylitis causes spinal inflammation in the neck, chest and arms. This inflammation causes pain in the vertebrae closest to the skull and forces the nerves against the vertebrae causing pain. Symptoms of cervical myelopathy include stiffness in the neck and deep pain on both sides of the upper spine. Shoulder pin and stumbling while walking are also symptoms of CSM because this pain radiates similar to the radiculopathy. The American Academy of Family Physicians also notes additional symptoms including crunching sounds with neck movements, sharp pain in the arm, elbow, wrist and fingers and numbness and tingling in the hands.


Although there is no cure for ankylosing spondylitis, selective nerve blocks may ease the pain and discomfort associated with the fusing of vertebrae in the chest and lumbar spine. Nerve blocks use a fluoroscope, x-ray imaging tool that allows physicians to locate specific nerves and groups of nerves for medication injection. Steroids, opiates and anesthetics are used to reduce pain and inflammation in nerves trapped between fused joint facets, notes the Yale Medical Group.

Expert Insight

A study completed by Rheumatology International, January 2009, entitled “Neurological complications of Ankylosing Spondylitis: neurophysiological assessment” was authored by Eman M. Khedr, Sonia M. Rashad, Sherifa A. Hamed, Fatma El-Zharaa. The study reported that of the 24 patients studied, 25 percent had neurological impairment such as cervical myelopathy that causes numbness and tingling in the arms and radiculopathy. The authors acknowledge that this was a small study and that additional study is necessary to assess the neurological symptoms of AS.



In a First, Blind High School Student Is Matanzas-FPC Football Game’s Radio Commentator : Septo Optic Dysplasia

Trent Ferguson is 18 years old. He plays drums in a rock band with some friends from school. He’s got his own podcast.  And he wants to be a professional sports broadcaster when he grows up.

None of this sounds different from thousands of other high school seniors in America right now. Except Trent is quite a bit different from all those other aspirants who can at least see a Norman Rockwell if it’s pointed out to them. He’s been completely blind since birth. He has never seen a thing, at least not the way most of us understand seeing. But he’s about the most optimistic, chipper person you’ll talk to, and his disability might as well be the spotter to his sense of humor.

During a recent interview he spoke of his band, “OuttaSight,” and when asked how he’ll get to his big radio gig Friday night at 7 p.m., calling the Flagler Palm Coast High School-Matanzas football game on WNZF 106.3 FM, he deadpanned: “I’ll drive there, no problem.”

“I’ve never in my life looked at being blind as a disability,” the Sebring native said in a recent interview. “It’s a challenge, and it’s a unique one. I’m different because I can see things in a different light. I’m never going to let blindness get in the way of what I really want to do.”

If blindness didn’t stop Homer from conjuring the Illiad and the Odyssey, and didn’t stop Bach from composing the grandest music, and didn’t stop Erik Weihenmayer from climbing Everest or Peter White from reporting on the Beijing Olympics for the BBC, it surely couldn’t stop someone like Trent from calling football games on the radio. It’s not about seeing. It’s about describing, using language to make listeners–who are really the blind ones–see, hear and feel the action on the gridiron.

trent ferguson wnzf

“Blind children, it has often been noted,” wrote the late neurologist and author Oliver Sacks, who wrote seminal works on blindness that redefine the meaning of the word, “tend to be precocious verbally, and may develop such fluency in the verbal descriptions of faces and places as to leave others (and perhaps themselves) uncertain as to whether they are actually blind.” He could have been describing Trent.

Trent is currently a senior at the Florida School for the Deaf and Blind in St. Augustine. He commutes four to five hours by bus from Sebring every Sunday night to spend a week at the boarding school, then returns home on Fridays.

This week though he’s sticking around to call the season-opening football game, with Dr. Dave (West) on Flagler Broadcasting’s WNZF. It’s a first for Trent. And of course it’s a first for WNZF or either schools and their decade rivalry.

“Hey, every radio listener is blind, too,” West told FlaglerLive. “No, seriously, Trent is a terrific kid who knows sports as well as anybody, and he’s going to be listening to me doing the game and periodically he’ll comment on what I’ve said, and add his own insight. I think it’s going to be a great listening experience for people. He’s not your average blind guy.”

An 18-year-old student illustrates the mind’s eye for all to see.

Trent, a confident, well-spoken student who sounds at least 10 years older than he is, was born with optic nerve hypoplasia, which, according to the National Organization for Rare Disorders (NORD) is the under-development or absence of the optic nerve combined with possible brain and endocrine irregularities. It is also known as Septo-Optic Dysplasia or DeMorsier’s Syndrome, and is only found in one of every 10,000 people.

Trent said ever since he can remember he’d listen to Tampa Bay Rays games on the radio. His love of sports came from his dad, Scott LaConey, and his grandpa. “When I was 6 I used to call the SiriusXM 60s on 6 channel and request songs,” he recalled. “I just used to love listening to the DJ’s and how great they sounded.”

Trent’s love of the Rays and his love of broadcasting has resulted in a longterm friendship with Enrique Eliu, the color analyst on Rays Spanish-language TV broadcasts who also is blind. Eliu also graduated from Florida School for the Deaf and Blind, and since 2011 has been mentoring Trent.

“I go to the games as often as I can, and I go up and sit with him for a few innings and practice calling games,” Trent said. “He’s a really nice guy and has helped me an awful lot.”

Trent cites Rays TV announcers DeWayne Staats and Brian Anderson, and legendary Florida State football announcer Gene Deckerhoff as his favorite broadcasters. “Radio is the best way to experience sports, because they conjure up the pictures for you,” Trent said. “I’m able to see exactly what they’re talking about on the field.”

Trent’s connection with Flagler Broadcasting began a little more than a year ago, when WNZF station owner Dave Ayers took a tour of Florida School for the Deaf and Blind and met many of the students.

“This kid comes up to me and starts talking about the formats of our stations, and what’s on each one, and how this is good and all that, and he knew more about our stations than I did,” Ayers said of Trent. “He was just a sports nut and a radio nut, and he impressed me so much.”

Ayers eventually asked Trent to come and tour the Flagler Broadcasting studios, and last February 5 Trent co-hosted the Beach 105.5 morning show for a day.

Soon after, Flagler broadcasting personality  Rich Carroll pitched the idea of a weekly sports podcast to Trent, who happily accepted. The half-hour show, called OuttaSight Sports, is available for free on Soundcloud.com. The two discuss baseball, football and whatever else is going on in the world of sports through a Skype connection each week.

“He has this incredible knowledge of sports, and his passion shines through,” Carroll said. “Sometimes you talk to kids and they say they like sports but they only know a little bit. Trent is the real deal.”

Trent said he’d love to study broadcasting in college, and hopes to go to a community college for two years after graduation, before moving on to a four-year school. Hos growing profile should make him the envy of any admission office.

Neither Ayers nor Trent would say if Friday night’s game would be just a one-time thing, or if Trent could come on and do other games. But Ayers said it’s definitely “not a gimmick,” and that he expected Trent to add a lot to the broadcast. “I think it’s going to be fascinating to see how his preparation and knowledge translates to the game,” Ayers said.

“If things go well, I’d love to do more games, and get whatever experience I can,” Trent said. “I’m just really excited to get a chance to do this.”

Oh, and one more fun detail to Friday night’s game: Two of the radio broadcast’s sponsors? Palm Coast businesses Eye-Style Optical and Blinds by Jason. Oliver Sacks will probably be watching and listening from somewhere. No eyes necessary.



Breastfeeding May Prevent Stuttering, ‘Not Magic Bullet’ But Breast Milk Can Help Speech Disorder

Image result for Breastfeeding May Prevent Stuttering, ‘Not Magic Bullet’ But Breast Milk Can Help Speech DisorderChildren that began stuttering at an early age and were breastfed in infancy may have a better chance of overcoming their speech impediment, according to a new study.

Findings published in the Journal of Communication Disorders describe a link between breastfeeding and the chances of a child recovering from a persistent stutter and protecting against the speech impairment altogether.

“Our study adds to the evidence suggesting that human milk can exert a significant influence on neurodevelopment,” University of Illinois doctoral student Jamie Mahurin-Smith said. “Although it’s not a magic bullet, it can make an important difference for children, even years after weaning.”

Researchers followed 47 children who had a history of stuttering. Out of the 30 that recovered naturally from stuttering, researchers found that those who were breastfed longer were more likely to stop. Boys in the study were the most affected. Those who were breastfed for more than a year had one-sixth the chances of developing persistent stuttering compared to those who were never breastfed, the study found.

The study attributes this to two fatty acids found in human milk: docosahexaenoic acid and arachidonic acid. Both play a crucial role in the development of neural tissue which aid in the fluency of speech, Mahurin-Smith said in a statement.

“It may be that fatty acid intake affects the expression of genes responsible for stuttering,” University of Illinois speech and hearing science professor emerita Nicoline Ambrose, said in a statement.

Stuttering, a speech disorder characterized by the abnormal repetition of words, sounds or syllables, usually develops between the age of 18 months to 5 years old. Although the causes remain unknown, it occurs more often in boys than in girls, according to the Children’s Hospital of Pittsburgh.

This isn’t the first study to link breast milk with stuttering. A study published in 1997 found that infants that were breastfed for more than nine months had a lower risk of developing a speech impediment than those breastfed for shorter periods of time.

“We’ve known for years that both genetic and environmental factors contributed to stuttering, but our understanding of the specific environmental variables in play has been murky,” Mahurin-Smith said. “These findings could improve our understanding of stuttering persistence and recovery.”



Flagging up PSP (progressive supranuclear palsy) Will Help Others, If Not Us

Ian McLeod and his wife Christine had to fight for a diagnosis of PSPThe first thing they noticed was a fall. It happened without warning; there was nothing to trip over, no dizziness or fainting – just a sudden loss of balance and a backwards fall, hard enough to hit the wall and leave a mark. Hard enough to hurt.

When it happened a second time, Ian McLeod and his wife Christine knew there was something wrong.

The question was: what?

It took them two long years to find an answer; two years battling for a diagnosis, feeling that doctors were not listening or dismissing what they had to say.

Christine said: “We noticed Ian’s voice was getting quieter, as if the sound wasn’t getting out.

“Then, in between two appointments with a specialist consultant, Ian lost the power of speech.”

When the diagnosis finally came, it was devastating.

Ian was told he had a rare, degenerative brain disease called Progressive Supranuclear Palsy – PSP.

At last, they had a diagnosis – along with the knowledge that there was no treatment or cure.

It causes the nerve endings in the brain to degenerate, leading to problems with balance, movement, vision, speech and the ability to swallow.

“You lose everything, apart from your brain,” said Christine.

Ian was also told his life expectancy was around seven years after the symptoms first appear. That was seven years ago.

As we talk, we’re sitting in Ian’s house in Cumbernauld.

He’s typing, slowly and carefully on to the iPad that is now the only way he can communicate. The words on the screen said: “I should be dead by now, Kirsty.”

“But you’re a fighter, Ian,” I replied.

There’s no doubt the words are true but they feel empty and meaningless.

For years, Ian was the manager of Glasgow’s busy Park Bar, where Highlanders gather. Born in Lewis but having lived for many years in Cumbernauld, Ian – or Sgadan as he is known to many – was the centre of every social gathering.

Over the years, he helped to raise thousands of pounds for charities – and when he asked for help, his friends did not let him down.

When Ian began attending a Parkinson’s self-help group in Airdrie, he quickly set up a sponsored hill climb to raise funds.

It was the biggest single fundraiser the group had ever had and helped to purchase a new therapy table for massages.

Last year, his friends back on Lewis organised a fundraising dance for the charity PSPA, which campaigns to raise awareness of the condition and funds research.

The evening brought weather that could hardly have been worse, with howling winds and heavy rain – but it still raised more than £5000.

The money is vital but just as important is raising awareness of a condition that is often misdiagnosed and under-reported.

Unfortunately, it’s easy to see why even experienced medics are baffled.

Keith Swankie, from Arbroath, was diagnosed in April 2012 after his GP attended a conference where a speaker talked about PSP and his doctor recognised his patient’s strange symptoms.

However, Keith’s symptoms are very different to Ian’s. Keith’s speech remains clear and he is able to chat on the phone. And while Ian remains able to walk, Keith has to use a wheelchair to get out and about and is now blind.

“The lack of awareness is incredible,” he said.

“Once when I got taken into hospital I told the paramedics I had PSP and they had never heard of it.

“Then, the consultant had to Google it!

“But PSP presents in different ways and it is very rare, so it is difficult to diagnose. One poor guy, who has since died, was actually sectioned because they thought it was a mental health issue. That was pretty harrowing to hear.”

Such a lack of knowledge left Keith determined to raise awareness and he agreed to appear in a YouTube film for PSPA.

He also pressed for an event in the Scottish Parliament, which led directly to funding for a Scottish research centre.

While PSP cannot be treated, therapies can help so early diagnosis is vital.

It would also allow people who are diagnosed in future to come to terms with their illness, rather than first having to fight to find out what is wrong.

In addition, Keith helped set up a PSP support group in Dundee, which serves the central belt and Fife as well as Tayside. There is also a group in Aberdeen.

Ian and Christine go by bus to meetings. It takes a full day but they believe it’s worth it.

“You meet people you can relate to and who know what you’re talking about,” said Christine.

Keith is now taking a back seat from the group as he has his own health to think of.

Ian, too, said he had made his contribution to fundraising.

And sadly, their huge efforts won’t benefit them.

However, Keith added: “We don’t want anyone else to have to go on this journey.”

Source: kincardineshireobserver.co.uk

Hand and Finger Exercises for Patients in Stroke Rehabilitation

If you suffer a stroke, hand and finger exercises are a likely part of the regimen back to normal health and function. Several heath agencies and publications note that strokes are a leading cause of long-term disability, and hand and finger exercises help open the road back to recovery.

Stroke Effects on Hands

Stroke victims often lose proper function of at least one hand and fingers, experiencing delays in gripping and releasing ability, according to Science Daily. The symptoms arise from the effects of strokes on fine motor control in the brain, which regulates movement through muscles, the skeleton and neurological messages, the American Heart Association reports. Strokes often cause at least temporary paralysis on one side of the body, including hands and fingers. The side of the body affected by strokes depends on the side of the brain in which strokes occur, with left brain strokes affecting the right side of the body and right brain strokes affecting the left side, according to the Brain Foundation.

Signficance of Exercise

Hand and finger exercises, movement and physical therapy help stroke victims relearn the use of fine motor skills. In an American Heart Association article, occupational therapist Rondi Blackburn notes a theory that repeated use of the affected side of the body — including hand and fingers — opens up new pathways of communication between the brain and the stroke-affected area. Thus, if you suffer a stroke, medical professionals believe repeated exercises involving affected hands and fingers retrain the brain for fine motor movement.

Exercise Types

The American Heart Association notes several types of exercise to retrain or hone fine motor skills, from a list borrowed from stroke survivors. Timed exercises placing pegs in peg boards and then removing them, shooting marbles into a box multiple times each day, exercising fingers with rubber bands and squeezing rubber balls help restore hand and finger function if you suffer a stroke. Exercises that target range of motion, such as repeatedly pushing affected hands and fingers against a pillow or mattress, also help.

Considering Balance in Exercise

Balancing exercise between affected and non-affected hands, fingers and limbs remains important for stroke victims, according to Science Daily. A treatment known as active-passive bilateral therapy pushes the affected and healthy portions of the brain to find balance in restoring fine motor skills, such as opening and closing hands and moving and gripping with fingers. According to Science Daily, strokes upset balance between the two brain hemispheres. If you suffer a stroke, the therapy means performing a task with the hands or fingers of both the affected and non-affected side of your body at the same time, such as gripping a ball in each hand rather than with just your affected hand.

Long-Term Benefits of Exercise

Studies within the the health-care field suggest exercise benefits stroke survivors beyond the potential restoration of hand and finger use, according to the American Heart Association. The studies suggest that exercise benefits survivors psychologically, builds endurance and may stave off future strokes.

Source: livestrong.com

Photo of displeased businesspeople looking sternly at snoring man at presentation

Making a Successful Disability Claim Based on Narcolepsy- Term life

Narcoleptics have won Social Security disability benefits based on narcolepsy’s functional similarity to seizure disorder.

Narcolepsy is a nervous system disorder that causes daytime sleep attacks and a strong feeling of needing to sleep. The exact cause of narcolepsy is unknown, although it does tend to run in families. Common symptoms of narcolepsy include:

  • excessive daytime sleepiness
  • sudden “sleep attacks,” where you feel a very strong urge to sleep during the day
  • cataplexy, which is where you have a sudden loss of muscle strength that can cause you to physically collapse
  • sleep paralysis, where you can’t move right before you fall asleep or when you are waking up, and
  • hypnagogic hallucinations, which occur between sleeping and waking and can involve seeing or hearing things that aren’t really there.

There is no cure for narcolepsy, but symptoms can sometimes be controlled by scheduling naps and in some cases taking prescription medicine. Narcolepsy can cause difficulty functioning at work or school and can lead to accidents and injuries if a person is so sleepy that he or she can’t function or if the person can’t control the urge to nap.

How Do I Qualify for Disability if I Have Narcolepsy?

There are three ways to qualify for disability: if your medical condition is on the list of impairments the Social Security Administration (SSA) publishes and meets the severity levels described for the specific impairment. Otherwise, you’ll need to equal a listing or qualify based on your impairments effect on your ability to work.

Listed Impairment?

Narcolepsy is not one of SSA’s “listed impairments,” so you will not be eligible for disability this way. Don’t worry; there are other ways the SSA can find that you are disabled.

Equaling a Listing

Since narcolepsy is not a listed condition, the SSA will look at whether your symptoms associated with narcolepsy are “equal to” a different condition that is listed. In some cases, the SSA has found people with narcolepsy disabled by “equaling” one of the listings for epilepsy.

If you suffer from narcolepsy and have frequent sleep attacks, your condition may be found to medically equal that of nonconvulsive epilepsy, which is a listed impairment. In order for your narcolepsy to be considered equal in severity to the nonconvulsive epilepsy listing, you’ll need symptoms similar to those required in the epilepsy listing: you have at least one episode per week, in spite of at least three months of compliance with prescription medications, and your episodes significantly interfere with your daytime activities. (For more information on getting disability for nonconvulsive epilepsy, see our article on disability for epilepsy.)

You should make sure the SSA has the following:

  • statements from your treating doctor explaining how long each sleep attack usually lasts and the number of sleep attacks you are having
  • statements from your treating doctor explaining whether you have been following all prescribed treatment, including any prescribed medications used to treat narcolepsy
  • results from any tests done, including ECGs, EEGs, polysomnograms (sleep studies), and the multiple sleep latency test (MSLT), and
  • documentation (including statements from your doctor and other relevant people) that describe any aftereffects of your sleep attacks that interfere with your day-to-day functioning.

Qualifying Under a Medical-Vocational Allowance

If the SSA determines that your narcolepsy is not equal to the epilepsy listing, or another listed impairment, it doesn’t necessarily mean your claim will be denied. The SSA has one more step it will go through to determine whether or not you are disabled for purposes of SSI or SSDI.

The SSA will look at all of the evidence in your file, which includes medical evidence and non-medical evidence, such as statements from you, your family and friends, therapists, and so on, to assess your residual functional capacity, or “RFC.” Your RFC dictates what type of work you can do and what your limitations are.

If you have narcolepsy, your RFC assessment will almost certainly be limited at the very least to: no work where you need to drive; no work involving heavy or dangerous machinery; and no work in high, unstable, or otherwise unsafe places.

If the SSA decides that, based on the severity of your narcoleptic symptoms and the work restrictions you need to keep yourself and others safe, there is no job you can perform, you will be eligible for disability under a “medical-vocational allowance.” For more information, see our section on RFCs and medical-vocational allowances.

If You Need Help Applying for Disability

Applying for disability, whether you apply for SSI, SSDI or both, can be a confusing and complex process, and it can be difficult to win benefits based on equaling another listing without the help of a lawyer. Many communities have legal aid or other services that provide assistance and resources for people applying for disability benefits. Or, contact a local disability lawyer, whose attorney fees will be limited to a percentage of your backpay benefits, if you win disability benefits.


Life, Faith, & My Battle with Chiari- Term life

Chiari: Standard of Grace Not Perfection

There’s a struggle in knowing what it is I should be able to do & what I can actually do.
At my age I should be out conquering the world, building a family, & having the best times of my life to date. Sadly the reality is I have a chronic illness; the monster by name is called Chiari.
What? Chiari? What is that? Did I say it right? I have never heard of that. Is it really a thing? What does it mean? You don’t look sick. It must not be that bad, since you still look good.
The reality is chiari is real & even more so it is for lack of better words… COMPLICATED!!
Never heard of chiari? Join the crowd. We are told it is rare, but it seems to be becoming more common; which breaks my heart. So what exactly is chiari? In simple terms our brain is too big for our skulls to contain. The brain & tonsils of the brain tend to herniate down out of the skull & get pinched between the skull & spinal cord cutting off or restricting the CSF (cerebral spinal fluid) flow to our brains. It in turn causes numerous symptoms that vary from person to person. Remember when I said, “Chiari is COMPLICATED?” Well here’s the thing, Chiari is not the same for everyone. One person may have over a hundred different symptoms that are severe & excruciating while another may have little to no noticeable symptoms at all.
Back in the day researchers & Drs measured the severity of chiari based off of the herniation size only. Now thanks to more research & CINE MRI’s it has been shown that the size of the herniation has very little to do with the symptoms. It has more to do with the blockage of csf flow.
Symptoms can range from any variation; it’s our brains we are talking about…that affects anything & everything!

Here is a list of the most common chiari symptoms: (photo source; www.conquerchiari.org)

Most days I wake up feeling defeated before my feet ever touch the ground. Insomnia is huge and on the rare occasions I sleep more than a few precious moments I am woke up from pain. My head hurts so bad that it demands to be felt, pulling me from my dreamy state to the harsh reality of what my life is with chiari.
I am fairly young and although my mind says I should be out conquering the world, working, building a family, & experiencing the best days of my life there are days that my greatest accomplishment is dragging myself from the bed to the recliner; sometimes there’s the added bonus of having enough energy to shower. My head and body hurts in such a way that I can’t begin to describe, much less make it to where anyone can understand it. The pain is so bad you want to cry, but you fight to avoid the tears. Why would you fight to avoid the tears? Simple… crying makes it hurt that much worse. Laughing hurts, singing hurts, everything hurts & makes it worse. So rather than shed those tears, you take deep breathes, close your eyes, & pray. Pray or help, relief, mercy, even just a moment free of pain.

But you don’t look sick…
Me being who I am… I will scarcely let anyone see my pain. Even those rare few who are in my inner circle or family will see the pain I am in. I am a fighter. I am ashamed of my illness…and who it has left me as. I have always been the one to put on a smile regardless of what is going on around me. As Elsa (Frozen) sings,

” Don’t let them in, don’t let them see

Be the good girl you always had to be
Conceal, don’t feel, don’t let them know
Well now they know,’

I conceal, I cover my pain with a smile, what I hope is a good attitude, & determination to do my best. One of the most valuable lessons I have learned on this journey is to hold myself to a standard of grace not perfection.
(image source: Pinterest)
As a perfectionist who loves to feel in control; this has been an interesting and challenging journey. I am still a work in progress. I hate the feeling & knowing that I am not always in control of my body & what it may do. I despise the fact that I have tried treatments of every kind, including brain surgery & nothing has helped. But, I keep trying. There are times I have to take a break… the poking, prodding, cutting, medications, treatments, tests, etc just get to be too much; and I need a break. But I always get back up & get back out there to try anything to feel better & find relief.
Some treatments & medications that Dr’s think will help; makes me feel worse. This past week I was put on Alzheimer’s medication as  an attempt to get relief. My dr’s aren’t shy about telling me how everything else has failed to help & it’s a struggle trying to come up with new things to try when you’ve tried pretty much everything. So here I am trying this new medicine that makes my head hurt twice as bad, but for now I will keep taking it & toughing it out just to see if it gets better.
Today is one of those days where I am having to remind myself that one way or another; no matter how bad it looks or feels I am going to make it. How am I going to make it? Honestly, I don’t have a clue, but I refuse to give up. I will continue to pray & believe for miracles for the entire chiari community & all others who are suffering.

I’m Chronically Ill and Afraid of Being Lazy- Term life

“In a society that holds productivity as unequivocally good, to do less feels like a moral failing.”

I own a teacup that has the words every day I’m hustlin’ scrawled around the rim. Filled with bow-shaped paper clips and other ephemera, the teacup sits on my desk as a reminder: to work hard, to keep going, to aim high, and prioritize productivity. Yet it is only at my elbow for an hour at a time at most; most days, I can only see the self-satisfied teacup from my bed. For the majority of each day, I am in one bed or another. Much of that time, I’m lying with my eyes closed and listening to an audiobook. I am not, in fact, hustlin’. I am a chronically ill woman, stuck on the sidelines.

In 2012, I became convinced that I’d developed tendonitis, or perhaps carpal tunnel syndrome. I was visiting my company’s home office in Pittsburgh, where my wrists and hands began to twinge with pain. My colleagues, who also worked all day at their computers, clucked with sympathy at my discomfort; many of them wore wrist braces, and ergonomic keyboards were available to employees who requested them. I thought the pain was a natural side effect of my grueling work habits. I woke at 4 a.m. every morning to write for four hours before getting ready for work, and drank enough coffee to cause spontaneous, caffeine-sick vomiting up to three times a day. The pain in my hands, I assumed, was like the vomiting. I could put up with it. I was, after all, ensconced in a culture of creatives in the tech industry—people who humblebragged about how little sleep they’d gotten the night before and used the phrases “lean and scrappy” to describe not only our company culture, but themselves.

But other things began to happen. In 2013, the pain appeared in my feet and legs as well, earning me the diagnosis of peripheral neuropathy, or damage to the nerves in my hands and feet. Then, on an autumn trans-Atlantic flight, I unexpectedly fainted. A seizure was suspected, but never proven. I began to have trouble walking in a straight line. I developed delusions. My psychiatrist, who had never seen me so ill, suggested the possibility of anti-NMDA receptor encephalitis, a neurological disease most notably chronicled in Susannah Cahalan’s memoir, Brain on Fire: My Month of Madness. During a neurological exam, I was given three minutes to say as many words as I could think of that started with D—I came up with five or six and was asked to remember a series of numbers that I’d have to recite later. My husband Chris accompanied me to the elevator afterward. “She didn’t even ask me about those numbers,” I complained. He paused and then said, gently, “Yes, she did. You knew all of them.”

I didn’t have anti-NMDA receptor encephalitis, but blood tests revealed the presence of antibodies that, according to the doctors, either meant cancer or a number of rare autoimmune disorders. More tests ensued, including an EEG and an MRI. Still, no one knew what was wrong with me. Too unwell to work, I left my job and went on disability benefits. In 2015, I was ultimately diagnosed with late-stage Lyme disease—a controversial diagnosis in the United States, where the Centers for Disease Control maintains tightly circumscribed criteriafor the disease, and does not believe that terms such as “chronic Lyme” ought to be used at all. (This is based in the belief that there is no convincing scientific evidence that a persistent B. burgdorferi infection causes so-called “chronic Lyme” symptoms.) And yet I believe that this diagnosis, which I was given by a “Lyme-literate doctor,” has saved me.

I began the long, hard slog of high-dose antibiotic therapy. Despite the pills, I remained sick. On some days, I was too weak to move my arms or legs; on the worst days, I was too weak to swallow or breathe without difficulty. In late November 2015, I stopped taking antibiotics and began an experimental treatment, known as Low-Dose Antigen Immunotherapy that is designed to calm a dysfunctional immune system by stimulating the production of T Regulator cells and which enabled me to partially function on most days. This is where I am now: too sick to go back to full-time work, freelancing and building a small online business with what energy I do have, and still alive enough to know how much I’m not doing.


Here are things that I can and can’t do. I can, on most days, work for approximately two or three hours a day, using bits of time here and there with breaks for rest. I can’t, on most days, function well after approximately 2 p.m., which is when I begin to develop fevers, moderate to severe nausea, weakness, fatigue, and a cornucopia of other symptoms that I never get used to, no matter how often they come to call. I can do some fun and exciting things, given certain accommodations. I recently traveled to Los Angeles for the Association of Writers and Writing Programs conference (AWP), spoke on a panel, and gave a reading to promote my debut novel, which I’d written in the five years before I became ill. However, I can’t serve as the managing editor of a major media site—a job that I was recently offered—because my body and mind can’t handle that kind of workload, no matter how much I long to take it on.

It’s said that the disabled are the largest stigmatized population of which any person can become a member at any time. This frequently comes to mind when I see people on social media speak with a certain amount of pride about hustling so hard that they haven’t slept more than a few hours in a week. When I see women that I admire scoff at the idea of self-care, I shrink because I’m often reading their words on my phone while lying in bed, engaging in the most intense self-care that I can manage.

Should things be just a little bit different, I’d be right there alongside them. After all, my work ethic and ambition haven’t gone anywhere, despite my dedication to doing nothing for hours per day. It’s my work ethic and ambition that call my “doing nothing” laziness; and laziness, or sloth, is cause in our go-go-go society for shame of the highest order. In “On Productivity Anxiety,” writer Rachel Vorona Cote recounts her need for “ritualistic assurances” of productivity from her husband. “Did I work enough today? Did I seem productive?” are the questions she asks of him before ultimately falling asleep. In a society that holds productivity as unequivocally good, to do less feels like a moral failing.


While working with my counselor, I’ve frequently brought up the topic of whether or not I am, in fact, lazy. It’s a question that I compulsively ask. As someone who used to define herself vis-a-vis her work ethic, to become unable to act upon that work ethic is nearly intolerable. My deep fear is that I’m secretly slothful and am using chronic illness to disguise the sick rot of laziness within myself. Surely I can rouse myself from this bed and bring myself to my desk? Surely I can pull myself up by the bootstraps and force myself to work? Instead of bragging online and in person about how much work I’ve accomplished, I post selfies from my bed, as if to prove that I am, indeed, ill. Compounding my shame is the private investigator sent after me last fall by my insurance company—a common practice in disability benefits cases—who reported that I was seen “smiling and laughing” after a doctor’s appointment, clearly a sign that all was well and good. Surely, then, I could be making myself useful. My disability benefits were pulled last September. I was horrified by the outcome, but, laughably, too ill to fight the ruling.

These days, I continue to surround myself with reminders of my former self. I dream of a future self, in remission and free of illness, who uses her pink Goal Digger pencil case without self-consciousness. Though it might be better to realize my worth outside of productivity, I continue to live in a society that praises the art of getting things done over all else—including wellness and rest—and these are values I can’t seem to shake.

Perhaps the solution is to view what I am doing through a different lens. My work, although it may not look like work to most, is to take care of myself. I must care for my health with as much attention as I once paid to the documents I was hired to edit, or to the long hours spent at the office on Saturdays. Aggressive pursuit of one’s ambition is a skillset that, I hope, has not left me. In the meantime, I am aggressively pursuing a dream of recovery.


The seven-year-old boy with such severe narcolepsy that he couldn’t kick a ball without falling asleep- Drug rehab oregon

A boy of seven suffered from such severe narcolepsy that he couldn’t even kick a football without the sleeping disorder causing him to doze off.

Reece Williams, who fell over up to 25 times a day and sometimes slept for 23 hours, was finally diagnosed after his father filmed him repeatedly collapsing into slumber.

Now, thanks to controversial drug Xyrem, which is only formally licensed to treat adults, he is at last able to play and sit in class without sudden falling asleep.

Scroll down to watch the video…

Reece WilliamsReece Williams

Collapse 1: The excitement of kicking a ball caused narcolepsy victim Reece Williams to doze off and fall over

Reece was five when he began suffering symptoms of narcolepsy and its sister condition cataplexy, a sudden weakening of the muscles.

Both can be triggered by strong emotions like excitement, laughter, surprise or anger. In Luke’s case his problems got worse over time.

His mother, Chantelle Burrows, said Reece went from a loving, happy-go-lucky boy to being moody and aggressive.

She said: ‘He would just fall to the floor like he had been knocked out. Sometimes he’d bang his head. It worried me sick.’

He would often try to hit his parents if either she or partner Luke Williams tried to wake him up at the home in Birmingham.

But despite the warning signs, doctors told them on three occasions that Reece was suffering from a virus and was just extremely tired.

Reece WilliamsReece WilliamsReece Williams

Collapse 2: This time Reece can’t even lift his leg to kick the ball before collapsing onto the ground

Miss Burrows, a school lunch time supervisor, said: ‘We started putting him to bed earlier but he got worse and worse.

‘His teacher kept stopping me saying she was concerned. He would fall asleep in the middle of the class. It meant he was falling behind on his school work.

‘We had to get a pushchair for him. He couldn’t even keep his eyes open to eat. He looked exhausted all the time.

‘He was terrified to go to sleep at night because he was having vivid nightmares. He would refuse to get into bed.’

Better: Reece can now control the symptoms of narcolepsy - and kick a ball - after taking drug Xyrex

Better: Reece can now control the symptoms of narcolepsy – and kick a ball – after taking drug Xyrex

Later, they took him to A & E at Birmingham Children’s Hospital.

Doctors tested for all sorts of things, including meningitis and leukaemia.

Reece had lumbar punctures, MRI scans and an EEG but they came back clear.

It was feared he had encephalitis lethargica or ‘sleepy sickness’, which attacks the brain and leaves some sufferers in a statue-like condition, speechless and motionless

Reece was given a high dose of steroids, which caused him to gain weight, and he had to spend months at a time in hospital.

However, the treatment failed to work and Reece’s condition worsened.

Mr Williams, 27, said: ‘A consultant asked him to walk in a straight line but he couldn’t. He was staggering all over the place. He looked drunk.

‘She said she could tell there was something seriously wrong with Reece but she didn’t have a clue what it was. She said she’d never seen anything like it.

‘It was a relief when the tests came back negative but we were thinking: ‘what is it?’ We were in the dark.’

Determined to find out what was wrong, he typed Reece’s symptoms into a search engine and the rare sleep condition narcolepsy came up.

He said: ‘Reece had all the symptoms. I’d also started to notice that when he laughed, his face went all funny. It was like a switch and he would just fall to the ground.’

It was then that Mr Williams, a labourer, came up with the idea of filming Reece every time he collapsed to show to the doctors.

Relieved: Reece with his parents Chantelle Burrows and Luke Williams, whio are calling for Xyrem – a drug that is usually only given adults – to be proscribed to children

The footage helped medics to diagnose Reece with narcolepsy and cataplexy, a sudden weakening of the muscles triggered by strong emotions like excitement, laughter, surprise or anger.


Narcolepsy is a disease of the central nervous system suffered by around 2million people worldwide, including 30,000 Britons and 125,000 Americans.

Excessive daytime sleepiness is the main symptom. Although 70 per cent of those with the condition, also suffer from cataplexy – a sudden loss of muscle tone.

A combination of the two, which Reece Williams has, causes victims to suddenly collapse at inappropriate times.

Other sufferers included Nirvana singer Kurt Cobain, pictured above, and Dad’s Army actor Arthur Lowe.
While narcolepsy usually begins in teenagers or young adults, it is not uncommon in children.

The first symptom is nearly always severe sleepiness.

Most sufferers will fall into deep REM sleep within five minutes – compared to 40 minutes the average person.

The condition gradually becomes worse unless treated with drugs.
The cause of the condition has not been established, although experiments point to an abnormality in a group of cells called the hypocretin system.

People with narcolepsy have been found to have a markedly decreased number of hypocretin nerve cells in the brain.

The main treatment for narcolepsy are the central nervous stimulants Provigil and Nuvigil.

Another option, used by Reese is Xyrem. Its precise mechanism is unknown, although the U.S. Food and Drug Administration have approved it as a standard of care for the treatment of cataplexy.

But, partly due to its cost, it is only licenced in Britain for use on adults.

When medics monitored his sleep patterns, they were stunned to discover he was in a deep sleep after just 19 seconds.

It normally takes the average person about 40 minutes to fall into a deep sleep.

Doctors tried to treat Reece’s condition with high doses of different medication but nothing worked.

He has since been put on Xyrem, which is used to reduce daytime sleepiness in patients as well as the number of cataplexy attacks.

The drug, which he has to take three times during the night, has improved his condition and now he can have a kick around in the park with his Dad.

Luke said: ‘It means the world to me. It’s all you want for your child – to be able to go out and play.

‘Reece is football mad. He supports Aston Villa. Six months ago, he wasn’t even able to kick a ball.

‘I worked out it was the build up to kicking the ball that made him collapse. It was the excitement.

‘We tried everything, even playing in silence, but it was no good.

‘He’d get angry with himself. We used to just go home.

‘Xyrem completely knocks Reece out for 12 hours so he is more awake during the day,

‘It’s an improvement but he sometimes still still falls asleep. The doctors are really pleased.

‘If it wasn’t for my new phone with its good video quality, he probably wouldn’t have been diagnosed.’

Dr Paul Reading, president of the British Sleep Society, said: ‘Narcolepsy probably affects one in 3,000 people and can often start in childhood.

‘The main symptoms of narcolepsy are unintended and irresistible naps through the day, episodes of collapse induced by emotions such as laughter (cataplexy) and disturbed sleep at night, often with vivid nightmares. All these elements may severely affect a child’s quality of life and education.

‘The most effective drug for narcolepsy is Xyrem although it is only formally licensed for treating adults. It is also a controversial drug, largely due to its high cost.

‘It is taken as a liquid at night before bed and greatly improves sleep quality. However, daytime symptoms of narcolepsy also improve, especially cataplexy.

‘The availability of Xyrem varies greatly across the UK as many local prescribing committees do not regard it as cost effective.’

Reece Williams video

15 things you only know if you have narcolepsy- Drug rehab center

Narcolepsy is a neurological disorder that affects the brain’s ability to regulate sleep-wake cycles normally.

It’s a widely misunderstood condition which can be frustrating and isolating for those of us who live with it.

Here’s 15 things you only know if you have narcolepsy.

1. There’s narcolepsy and then there’s Hollywood narcolepsy

The cartoonish depictions in Deuce Bigalow: Male Gigolo and Rat Race have caused widespread misperceptions of narcolepsy.

Unlike on-screen portrayals, it is incredibly rare for someone with narcolepsy to go from fully alert to fast asleep at the drop of a hat.

2. People misinterpret your symptoms

You’ve been asked if you stay out late partying all the time, have a drug problem, or if you’re simply lazy and lack motivation.

3. Sleepiness and tiredness are not the same thing

Sleepiness isn’t just lack of energy, it’s having trouble keeping your eyes open, being unable to concentrate, and having the strong urge to nod off.

It feels like you’ve been awake for 24-48 hours.

4. Your naps are a necessity, not a luxury

Don’t call them catnaps. Cats take naps because they want to – we take naps because we have to.

5. You sometimes cannot move or speak while falling asleep or waking up

These episodes, called sleep paralysis, only last a few seconds or minutes but are sometimes frightening and always annoying.

6. The ghostly figure in your bedroom isn’t paranormal, it’s parasomnia

Visual, auditory, tactile, or other sensory hallucinations can accompany sleep paralysis.

In the past, these experiences were interpreted as everything from demonic spirits to aliens.

XX things you only know if you have narcolepsy (Picture: Liberty Antonia Sadler)
(Illustration: Liberty Antonia Sadler for Metro.co.uk)

7. You do things without remembering doing them

This is called automatic behavior and can happen when you’re sleepy and performing ‘second nature’ activities like cleaning.

Unfortunately you’re not doing these things well.

This is why your lecture notes look like they were written by a drunk tortoise and how your glasses ended up in the frige.

8. Narcolepsy and insomnia aren’t opposite conditions

People with narcolepsy don’t sleep more than the average person.

Many of us experience difficulties staying asleep due to problems like vivid dreams, periodic leg movements, or even insomnia.

9. Laughing can be scary

Around 70% of us experience cataplexy, a sudden, temporary loss of muscle tone brought on by strong emotional reactions like fear or laughter.

This results in anything from a mild drooping of the eyelids to collapsing on the floor.

We’re not asleep but fully conscious and unable to move or speak. It can be terrifying.

10. Narcolepsy is not a behavioral disorder and cannot be fixed with diet and exercise

The most common form of narcolepsy, narcolepsy with cataplexy, is caused by the destruction of brain cells that produce the wakefulness-promoting neurotransmitter hypocretin.

So please stop asking if we’ve tried transcendental meditative cardio pilates or low-carbohydrate gluten-free sugar-free detox cleanses.

11. Your brain fog gives London a run for its money

Constant sleepiness leads to brain fog – the feeling of being in a daze, forgetfulness, lack of focus, difficulty thinking, blurred vision, and confusion.

XX things you only know if you have narcolepsy (Picture: Liberty Antonia Sadler)
(Illustration: Liberty Antonia Sadler for Metro.co.uk)

12. The medications might help with some of the symptoms, but they aren’t a cure

Doctors prescribe meds to improve daytime alertness, nighttime sleep, and reduce cataplexy attacks.

However, these drugs can have undesirable side effects and some people also develop tolerance with long-term use.

13. Narcolepsy varies from person to person

Some people have all the symptoms I’ve mentioned above, some only have one or two.

14. Getting the right diagnosis isn’t easy

It takes an average of three to five years for people with narcolepsy to be properly diagnosed.

Many people are first misdiagnosed with things like stress, depression and epilepsy.

15. Narcolepsy isn’t very rare

Narcolepsy affects about one in every 2,000 people, so by most definitions it barely qualifies as a rare disease.

But I think we’re pretty darn special, so that ought to count for something.