tag:ltcreform.posthaven.com,2013:/posts Health and Disability 2019-02-21T01:38:11Z Norm DeLisle tag:ltcreform.posthaven.com,2013:Post/1309217 2018-08-05T11:35:35Z 2018-08-05T11:35:35Z Existing drug may prevent Alzheimer's


Then, the question, "Can specialists prevent the disease in people deemed at increased risk?" arises.

The authors of a new study, from the University of Virginia in Charlottesville, suggest that one drug called memantine — which is currently used to manage Alzheimer's symptoms — may actually help prevent the disease. This, however, might only happen if a person takes the drug before symptoms set in.

"Based on what we've learned so far, it is my opinion that we will never be able to cure Alzheimer's disease by treating patients once they become symptomatic," says Prof. George Bloom, of the University of Virginia, who oversaw the study.

"The best hope for conquering this disease is to first recognize patients who are at risk, and begin treating them prophylactically with new drugs and perhaps lifestyle adjustments that would reduce the rate at which the silent phase of the disease progresses," he says, adding, "Ideally, we would prevent it from starting in the first place."

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1308878 2018-08-03T10:17:53Z 2018-08-03T10:17:53Z Probiotics to Prevent Clostridium difficile Infection in Patients Receiving Antibiotics



Clinical Question  In adults and children prescribed antibiotics, is co-administration of a probiotic associated with a lower risk of symptomatic Clostridium difficile infection without an increase in adverse events?

Bottom Line  Moderate-quality evidence suggests that probiotics are associated with a lower risk of C difficileinfection and very low–quality evidence suggests that probiotics are associated with fewer adverse events vs placebo or no treatment.


Antibiotics are commonly prescribed and are associated with Clostridium difficile infection (CDI) and its complications including toxic megacolon and death.1 Recent data suggest that treating CDI costs $24 205 per patient.2 This JAMA Clinical Evidence Synopsis summarizes a recent Cochrane review.3

Among 31 studies comparing antibiotics and probiotics vs placebo or no treatment for preventing CDI in patients receiving antibiotics, probiotics were associated with a lower risk of CDI, adverse events, and antibiotic-associated diarrhea. 


Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1308305 2018-08-01T10:14:27Z 2019-02-21T01:38:11Z Nerves Repaired Using Bioscaffold Fitted with “Radio” Antenna


Electrical signals generated outside the body by transcranial stimulation have helped repair severed sciatic nerves in rats, say researchers.

Much evidence suggests the body can repair certain types of peripheral nerve damage. But only in certain circumstances and often in limited ways. So new ways to reconnect severed nerves and to trigger repair and regrowth are of considerable interest.

Which is why the work of Ashour Sliow at Western Sydney University in Australia and a few colleagues is important. These guys have developed a new way to reconnect a severed nerve with a biodegradable scaffold and then stimulate it electrically using a magnetic field outside the body.

They say their technique is minimally invasive, unlike other nerve regeneration approaches and can repair severed nerves in rats.

In recent years, neurologists have discovered that brief electrical stimulation can significantly improve the way nerves repair and regrow.

But there are significant challenges in perfecting this kind of treatment. One is that severed nerves are often stitched back together again and the sutures are a significant source of scaring and inflammation.

Then there is the problem of applying electrical stimulation. This is often done using a conducting band around the reconnected part of the nerve that is connected to a wire that extends out of the body.

This often causes in problems. Any invasive connection is prone to infection and any small tug on the wire can dislodge the band. In practice, the conducting band often migrates, which significantly reduces its therapeutic effectiveness.

“Repairing and electrically stimulating peripheral nerves with a non-invasive device is very challenging and the current scientific and technological know-how has yet to produce an effective system to combine and perform these two tasks together,” says Sliow and co.


Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1307288 2018-07-29T11:08:01Z 2018-07-29T11:08:01Z Side effects of painkillers are worse in Alzheimer's


A recent study demonstrates that pain relief drugs produce more pronounced side effects when taken by people with dementia. A second study uncovers why this might be the case.

Roughly 50 percent of people with dementia who are living in nursing homes experience substantial pain. According to earlier studies, this pain often goes unnoticed by clinicians and is therefore poorly managed.

Although paracetamol is generally the first line of treatment for pain, opioids are used when paracetamol is not effective. In fact, around 40 percent of people with dementia living in nursing homes are prescribed opioids.

The team found that side effects such as personality changes, sedation, and confusion were significantly worse in individuals taking opioids, compared with those taking a placebo.

In fact, those who were prescribed the opioid buprenorphine experienced three times the level of harmful side effects. Also, the patients taking buprenorphine were much less active.

"Pain is a symptom that can cause huge distress and it's important that we can provide relief to people with dementia. Sadly, at the moment, we're harming people when we're trying to ease their pain."

Prof. Clive Ballard, University of Exeter Medical School, U.K.

Prof. Ballard's team has also carried out studies on the mechanism behind the increased risk of side effects for people with dementia.

Initially, they were looking at the treatment of arthritis in a mouse model. But along the way, they noticed that mice with Alzheimer's were much more sensitive to the effects of morphine; they needed less for adequate pain relief and experienced worse adverse effects.

They discovered that this was because mice with Alzheimer's release higher levels of the body's natural opioids, such as endorphins.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1307059 2018-07-28T12:02:35Z 2018-07-28T12:02:35Z Inflammation Is Misunderstood by the Public — And Scientists

While we tend to focus on anti-inflammatory treatments, like biologics or ibuprofen, exploring the mechanisms of inflammation is the bigger picture of treatment possibilities in every part of medicine and personal recovery.......


Before You Start: Terms to Understand
Inflammation: The immune system’s local, short-term response to cellular damage by increasing blood flow 
and other repair-focused compounds.
Low-grade chronic inflammation: A “slow drip” response to widespread cell damage caused by aging, with 
the byproduct of impairing the function of cells and organs.
Inflammasome: A multiprotein intra-cellular complex that regulates inflammatory responses.

Metabolism: The sum of every chemical reaction that happens in the body. It breaks down (catabolism) 
food for energy and also rebuilds (anabolism) those basic molecules into cells.

Macrophage: Immune cells that reside in every organ in the body and are critical to maintaining organ 

Our discoveries have to do with the specific pathways between inflammation and disease. The question has always been, if inflammation causes all of these age-related diseases, well, there are lots of anti-inflammatory drugs on the shelf of your local pharmacy. We ought to be able to take those and not get old, and not get diseases, which isn’t the case. 

The problem is inflammation is a very broad term. Within the phenomena, we’re finding very specific pathways, and within those we’ve found that there is not only an association but a causal link between specific inflammatory pathways and diseases of aging

For instance, this complex called the NLRP3 inflammasome. It’s found in every macrophage in all human organs. If we lower the activity of this inflammation-producing mechanism, at least in mice, we find they are protected from many aging disorders like bone loss and diabetes. In the elderly, we’ve found that lowering the activity of this pathway improves metabolism. 

These are the kind of new findings that are linking the very disparate fields of metabolism and the immune system and even the nervous system, since we recently discovered very special macrophages that hug the nerves in the periphery of the brain. Activity in those macrophages can actually impair the functioning of the nervous system.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1307055 2018-07-28T11:50:20Z 2018-07-28T11:50:20Z Does magnesium relieve migraines?


Some people use magnesium to treat and prevent migraine symptoms, including a severe headache, visual disturbances, sensitivity to light and sound, and nausea and vomiting.

Some research has indicated that taking a magnesium supplement could be an effective way to prevent headaches. Other studies have also suggested that the magnesium levels in a person's brain may be low during a migraine.

The American Migraine Foundation suggest taking a 400–500 milligram (mg) supplement of magnesium oxide daily to prevent migraines.

Some researchers think that magnesium's effectiveness as a preventive against migraines increases when a person takes higher doses — over 600 (mg) — for at least 3 to 4 months.

However, taking high doses of magnesium as a supplement may cause adverse effects in some people. (usually diarrhea because the magnesium isn't absorbed)

Taking magnesium may be more effective for people whose migraines include aura, or visual disturbances.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1305896 2018-07-24T10:46:53Z 2018-07-24T10:46:53Z Alzheimer's Guidelines for Primary Care Announced


At its annual meeting here, the Alzheimer's Association previewed its first-ever clinical practice guidelines for primary care physicians evaluating Alzheimer's disease, dementia, and neurodegenerative cognitive behavioral syndromes, to be released in full later this year.

Twenty recommendations for primary and specialty care settings are in the new guidelines that were introduced at the Alzheimer's Association International Conferenceon Sunday. Key points were outlined in a press release; the formal clinical practice guidelines will appear later in a peer-reviewed journal and will include rationales behind the recommendations to provide context for physicians and nurse practitioners, a spokesperson for the association said.

The most important guideline may be the first one: patients who have cognitive, behavioral, or functional changes should be evaluated, said James Hendrix, PhD, the association's director of global sciences initiatives.

Alzheimer's disease and dementias often are undiagnosed, Hendrix told MedPage Today. "When patients come in with complaints of symptoms, they should be followed up for further evaluationAll too often, they're not, for whatever reason -- physicians feel they don't have the right tools, or they think a little bit of memory problems as we get older is normal. Physicians need to take these concerns seriously."

And patients who are more challenging to diagnose -- those with atypical or rapidly progressive cognitive-behavioral symptoms -- should be referred to a specialist.

"We have to recognize there are people who may be diagnosed with a treatable disease or disorder," he said. "By not doing something, by not following up, by assuming that everybody who walks in the door is going to have a disease that's difficult to treat, we do patients a disservice."

"A significant portion of people with cognitive impairment or dementia who are taking medication for Alzheimer's may not actually have the disease," Hendrix pointed out. In IDEAS, a study assessing the effect of amyloid positron-emission tomography (PET) imaging on patient outcomes, interim results showed that about 45% of patients with mild cognitive impairment and 30% of patients with dementia did not have brain amyloid and therefore did not have Alzheimer's disease, he noted.

The guidelines also call for clear communication about diagnoses and test results. In an Alzheimer's Association survey a few years ago, only 45% of people with Alzheimer's disease or their caregivers said their doctor told them their diagnosis, Hendrix noted.

"People need to plan for their future. They need to prepare themselves and their families for what's to come. If you had a late-stage form of deadly cancer and only had a few months to live, you'd be told. We need to give people with Alzheimer's and dementia the same respect."

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1305341 2018-07-22T10:32:53Z 2018-07-22T10:32:53Z Analgesics Reduced Risk, Improved Prognosis for Ovarian Cancer


Two large-scale studies showed modest benefits for daily use of aspirin, NSAIDs.

Daily or almost daily aspirin use modestly reduced ovarian cancer risk among women who took aspirin for less than 10 years, while women already diagnosed with the disease who had recently starting using aspirin or non-steroidal anti-inflammatory drugs (NSAIDs) had a significantly lower risk of ovarian cancer-specific death than never-users, two separate studies indicated.

Both teams said that if the findings are confirmed, the results may support the assessment of aspirin and NSAIDs either as a chemopreventative measure in women not yet diagnosed with ovarian cancer or to improve the prognosis of those who already have the disease.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1305035 2018-07-21T10:39:37Z 2018-07-21T10:39:37Z Minnesota rolls out first statewide job board for home care support

Nice idea.....


Thousands of Minnesota seniors and people with disabilities who require help with daily living activities at home now have a place to go to find caregivers who can meet their needs.

After years of preparation, the Minnesota Department of Human Services (DHS) has launched the state's first online job portal that connects people who need assistance with tasks, such as bathing, dressing and preparing meals, with caregivers who are looking for work. State officials will roll out the new online job portal — Direct Support Connect — to the state's 140,000-person direct care workforce this summer and fall, with the hope of getting enough people to register for the website that it will become a reliable place for people to get help in their homes.

The new service, which will be announced Friday, is designed to reduce the daily frustrations many individuals with disabilities face in finding and keeping quality caregivers. All too often, people who are unable to get reliable aid have resorted to making desperate pleas for help on Facebook and other social media networks, only to receive scattershot responses that don't match their needs. The challenges of recruiting reliable care can be so daunting that people with significant physical disabilities can spend several hours a day just posting ads online, combing websites for help and interviewing possible candidates.

"This could really do miraculous things for the state's [home care] program," said Shawntel Harry, of east St. Paul, who has been a personal care attendant for 15 years. "If we can get the people who need care immediately connected to those who can provide it, then we could bring stability to people's lives."

The demand for a statewide service that would connect people to direct support workers has intensified over the past several years, amid a critical and deepening shortage of caregivers. The shortage has grown so acute that scores of people who could be living independently in their own homes or apartments are instead moving into sterile and restrictive nursing homes and assisted-living facilities, the Star Tribune reported in May. Others have been forced to go without care for hours or even days at a time, putting their health in jeopardy, say caregivers and their clients.

As of December, there were nearly 8,000 unfilled home health care jobs across the state — the most in at least 16 years, according to the state workforce agency.

"We are at a moment in time when we need to do everything we possibly can to bolster and support the direct care workforce," said DHS Assistant Commissioner Claire Wilson.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1304160 2018-07-18T11:11:50Z 2018-07-18T11:11:50Z What It’s Like Living with Lupus


It’s hard to convey to people how I’m feeling and what the practical consequences are. Writing this is painful. I feel stalked by shame when I have to explain why I can’t go out in the evening because I’ll be overcome by fatigue, or why I can’t sit in the sun because I’m photosensitive and the sun makes my joints ache.

This afternoon, I’m contemplating the bruises on my legs, the latest manifestation of my malfunctioning immune system. In December 2017, I was diagnosed with antiphospholipid syndrome, a blood-clotting disorder that rapidly escalated the urgency of my previous lupus diagnosis. The bruises aren’t because of the disease, which just causes clots and strokes and whatnot. The bruises are about the anti-clotting medication.

They appear from nowhere. The other day, I was quietly writing and a huge welt came up on my thumb. I did nothing to provoke it, but there it appeared, red-brown and glowing.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1303812 2018-07-17T10:31:57Z 2018-07-17T10:31:57Z Rumored Amazon Pilot Would Target Hospital-to-Home Transitions http://bit.ly/2zMo18N

Two health systems are reportedly working with Amazon (Nasdaq: AMZN) and a startup called Xealth, with plans to launch a pilot program that could ease patients’ transition between hospital and home.

“The idea behind the pilot, which is still under review and is slated to start in a matter of months, is to provide patients discounted easy access to the medical supplies and other goods they need via Amazon Prime,” wrote CNBC’s Christina Farr, who first reported the story last week. “Those who do not have a Prime membership or do not want to use Amazon would still be able to access the pilot via other e-commerce providers.”

The pilot would involve Seattle-based Providence Health Systems and the University of Pittsburgh Medical Center (UPMC). Both have invested in a startup called Xealth, which has specialized in making digital tools and resources available to patients, supporting health system efforts to monitor and manage care.

Xealth would spearhead this new pilot, with Amazon providing guidance on setting up the bundles of goods and the reseller accounts, Farr reported, citing unnamed sources familiar with the effort.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1303811 2018-07-17T10:29:36Z 2018-07-17T10:29:36Z FDA updates warnings for fluoroquinolone antibiotics on risks of mental health and low blood sugar adverse reactions http://bit.ly/2LpuxUu

The U.S. Food and Drug Administration today is requiring safety labeling changes for a class of antibiotics called fluoroquinolones to strengthen the warnings about the risks of mental health side effects and serious blood sugar disturbances, and make these warnings more consistent across the labeling for all fluoroquinolones taken by mouth or given by injection.

FDA-approved fluoroquinolones include levofloxacin (Levaquin), ciprofloxacin (Cipro), ciprofloxacin extended-release tablets, moxifloxacin (Avelox), ofloxacin, gemifloxacin (Factive) and delafloxacin (Baxdela). There are more than 60 generic versions. The safety labeling changes the FDA is requiring today were based on a comprehensive review of the FDA’s adverse event reports and case reports published in medical literature.

Across the fluoroquinolone antibiotic class, a range of mental health side effects are already described in the Warnings and Precautions section of the drug labeling, but differed by individual drug. The new class-wide labeling changes will require that the mental health side effects be listed separately from other central nervous system side effects and be consistent across the labeling of the fluoroquinolone class. The mental health side effects to be included in the labeling across all the fluoroquinolones are disturbances in attention, disorientation, agitation, nervousness, memory impairment and delirium.

Additionally, the recent FDA review found instances of hypoglycemic coma where users of fluoroquinolones experienced hypoglycemia. As a result, the Blood Glucose Disturbances subsection of the labeling for all systemic fluoroquinolones will now be required to explicitly reflect the potential risk of coma with hypoglycemia.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1303809 2018-07-17T10:26:02Z 2018-07-17T10:26:02Z Two Experimental Drugs Reduce Infections in the Elderly http://bit.ly/2uu9ycD

Despite the treatment being given for only six weeks, the positive effects lasted for a year.

Acombination drug therapy that inhibits the TORC1 pathway involved in immune responses boosted the health of people 65 years and older, according to research published in Science Translational Medicine yesterday (July 11). 

“This study is the first step to suggest we may be able to target some of the fundamental pathways contributing to aging to promote healthy aging, including healthy immune function, in older people,” coauthor Joan Mannick, the chief medical officer at resTORbio, Inc, tells WBUR.

After a year, the researchers found that subjects who received the combination therapy showed a 40 percent reduction in colds and respiratory infections. Additionally, the drugs augmented the body’s response to a flu vaccine by producing 20 percent more antibodies against the influenza virus.

“Perhaps the most exciting aspect of the results is that the protection lasted for the duration of the study, namely a year, even though the drug was only given for the first six weeks,” Aubrey de Grey, who studies aging at the SENS Research Foundation and was not involved in the study, tells WBUR

Given that respiratory infections and susceptibility to flu are both major issues for older people, these results are quite promising, according to The Guardian

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1303808 2018-07-17T10:22:43Z 2018-07-17T10:22:44Z Rheumatic Adverse Events on the Rise with Cancer Therapies http://bit.ly/2Lorxru

The spectacular success and rapidly widening use of the immune checkpoint inhibitors in the treatment of cancer has been accompanied by a notable increase in rheumatic immune-related adverse events.

"What the immune checkpoint inhibitors do -- ramping up the immune system through enhancing T cell activity -- is the exact opposite of what we do, which is to suppress the immune system to treat our diseases," he explained.

Multiple rheumatic phenotypes for these adverse events have now been reported and virtually every organ has been affected, with cases of skin rash, colitis, hepatotoxicity, pneumonitis, ocular and renal involvement and even hypophysitis, which was almost unheard of in the past.

What will be required is understanding the balance required between the immune activation needed to control the cancer and the immune suppression that manages the rheumatic disease, he said.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1303464 2018-07-16T09:46:06Z 2018-07-16T09:46:06Z New Trick in DNA Editing Could Unlock Thousands of Cures

Narrower change+Lower Risk...


A CRISPR startup rewrites tiny mutations instead of cutting and pasting entire genes.

For all its promise to cure disease, the gene-editing tool known as CRISPR still has a lot of unknowns. A big one is its safety: will it edit only the places in the genome it’s supposed to?

Perhaps the most contentious claim about CRISPR, that it could cause hundreds of unintended edits throughout a genome, has since been retracted. Even so, scientists still worry it could cause some unwanted DNA insertions or deletions. Other recent research indicates that some versions of CRISPR could make edited cells more vulnerable to cancer.

Such problems could be avoided with a more precise technique being developed in the labs of David Liu, a professor at Harvard and the Broad Institute. His team’s version of CRISPR involves so-called base editors, which go after much smaller targets — individual letters of DNA.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1301648 2018-07-10T11:03:27Z 2018-07-10T11:03:28Z Cancer Vaccine Works 'Startlingly Well' in Mouse Mode


An experimental cancer vaccine has demonstrated dramatic results in mice with many different cancer types and distant metastases and is now to be tested in patients with cancer.

According to researchers at the Stanford University School of Medicine in California, 87 of 90 mice were cured of cancer, and among the 3 animals that experienced a recurrence, the tumors once again regressed after a second treatment.

The results were observed in mice with breast, colon, and melanoma tumors and lymphoma.

The study used an approach called in situ vaccination. With this strategy, immuno-enhancing agents are injected locally into one site of tumor, which in turn triggers a local T cell immune response that will then attack the cancer cells in the rest of the body.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1301645 2018-07-10T11:00:35Z 2018-07-10T11:00:35Z How The US Military Reinvented Trauma Care And What This Means For US Medicine


 As we honor the men and women who have served our nation in uniform, it is also worth recognizing the US military’s complete transformation of trauma care over the past 17 years of continuous military operations. This transformation, and the resulting decline in death and disability rates, deserves to be recognized as one of the most remarkable achievements in the history of US medicine.

In the civilian world, it takes 17 years on average for a new discovery to change medical practice. By contrast, the US military developed, fielded, or dramatically expanded more than 27 major innovations in little more than a decade over the course of the wars in Iraq and Afghanistan. As a result, the death rate from battlefield wounds decreased by half, to the lowest level in the history of warfare.

Reinventing Front-Line Care

Working with a research budget 1/30th the size of that of the National Institutes of Health, the Department of Defense (DoD) identified, prioritized, and funded high-impact combat casualty research to meet its most pressing needs and push new products to the field. To counter the rising toll of casualties from improvised explosive devices, the DoD supplied redesigned tourniquets to front-line soldiers and marines to help them stop life-threatening bleeding quickly and effectively. Surgical teams were positioned far forward to resuscitate critically injured warriors with a balanced mix of blood products and perform “damage control surgery” (which focuses on threats to life and defers definitive repairs until later).

To transport severely injured casualties, the military trained its MEDEVAC helicopter crews to provide advanced life support and often supplemented them with en route critical care nurses. Rather than keep wounded troops in-country until they were “stable enough to fly” as was done in Vietnam, the Air Force converted returning C-17s and other transport aircraft into “flying ICUs” staffed by specially trained critical care air transport teams. These efforts allowed for the rapid evacuation of critically ill and injured service members to Landstuhl Medical Center in Germany, then to the United States. These new transport procedures were so effective that it was not unusual for a warrior wounded in a remote province of Iraq or Afghanistan to reach Walter Reed or another US medical center within 48–72 hours of injury. The in-flight mortality rate on these transports was an astonishingly low 0.25 percent. Once back in the US, wounded troops received multiple surgeries and early and skilled rehabilitative care, assisted by new technologies designed to improve survival and enhance recovery from the invisible and visible wounds of war.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1300356 2018-07-06T10:27:32Z 2018-07-06T10:27:32Z Thriving with Vision Loss: Introducing the APH ConnectCenter


“Your site has been an invaluable resource for my family and myself. I am so thankful that you guys take the time to compile information for families that would be impossible to find elsewhere.” - A parent speaking of FamilyConnect

A mother gets tips on how to help her preschool daughter who is blind make friends.

Teenage boy reading braille & smiling in front of a tactile map
A father whose son is low vision reads articles written by another parent with similar experiences.

A rehabilitation counselor watches his student's confidence grow in mock job interviews.

A senior who is worried about life with recent vision loss finds reassuring information written in Spanish, her native language. 

Continuing the Legacy of Independence through Information
In February 2018, the American Foundation for the Blind (AFB) and the American Printing House for the Blind  (APH) announced a historic partnership with  the mutual goal of improving the lives of children and adults who are blind or visually impaired. As of July 1, this partnership has taken effect.

APH has now become the steward of several key information resources founded by AFB. The goal is to ensure the continued impact of these critical sources of information. AFB is taking its work to a new level by investing in policy and programs focused on creating a more inclusive, accessible society for people with vision loss.

Introducing the "APH ConnectCenter"
Building on decades of work by AFB, APH has now grouped these resources that cover every aspect of life under the name the APH ConnectCenter. The APH ConnectCenter includes:

FamilyConnect.org - gives parents of children who are visually impaired a place to find resources and support each other.

CareerConnect – provides employment information, career-exploration tools, and job-seeking guidance for individuals with vision loss and professionals who work with them.

VisionAware.org – helps adults who are losing their sight continue to live full and independent lives by providing timely information, step-by-step daily living techniques, and a supportive online community.

BrailleBug.org – teaches children about braille through games and activities and provides resources to teachers and parents.

APH ConnectDirect - this information and referral 800 number provides information by phone on virtually any topic related to visual impairment and blindness. Dial toll-free 1-800-232-5463. You may also submit questions by email atinfo@aph.org.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1300055 2018-07-05T10:10:22Z 2018-07-05T10:10:22Z The “Smart Kid Disorder” You’ve Never Heard of

I was hyperlexic when I was young; also, obsessed with reading....


We rely on our children’s pediatricians in the early years when we have a question, their teachers for information when we can, and when all else fails, we turn to the internet. I, myself, have typed into a search bar looking for answers on many occasions. “How can I get my toddler to sleep through the night? How can I get my toddler to eat a vegetable? How is it possible that my toddler just read me a book?” Well, I guess that last one isn’t typical, but it is a question that I have had to Google before. It is a question that quite a few parents have had to Google, actually, and we all have something in common: our kids have Hyperlexia.

I am guessing you have never heard of Hyperlexia. Neither had we, until we stumbled upon blogs by other parents and a few journal articles written by a handful of doctors and researchers who took an interest in it. Hyperlexia is complicated, but a good general way to describe it is a precocious reading ability and an intense fascination with letters and numbers that is accompanied by issues comprehending verbal language. Hyperlexic kids have extremely strong visual and auditory memory which they use to break down TV shows, conversations, music, anything to learn something new. Often, they can recite shows they have seen or books that have been read to them verbatim after being exposed to it once or twice. This act is called “echolalia” and is one theory surrounding the idea of how they teach themselves to read, some as young as two years old. (Bainbridge, “If my Toddler”). Hyperlexia is in the Diagnostic and Statistical Manual of Mental Disorders (also referred to as the DSM), but not as a diagnosis. In this manual, which is basically the Bible of disorders, it is characterized as a splinter skill of children with autism. But, a lot of our kids don’t have autism. My son has had two separate evaluations to prove it.

According to Dr. Darold Treffert, who is a leading expert on Hyperlexia, there are three different types. Type 1: Neurotypical children who read early. Type 2: Children with autism who have Hyperlexia as a splinter skill. Type 3: Children without autism who read early, but have some autistic-like traits that fade over time. (Treffert, “Oops! When autism”). If a disorder is not considered a diagnosable disorder in the DSM, it doesn’t technically exist and doesn’t get diagnosed. Hyperlexic kids often have sensory issues and autistic-like traits that require early intervention, but these services are hard or impossible to get without a diagnosis. Not to mention the fact that it is hard for doctors and educators to help your child with hyperlexic issues when they have no idea what that means. Hyperlexia needs to be added into the DSM as a stand-alone diagnosis so that hyperlexic kids who do not have autism, can get the help they need to foster their strengths and overcome their challenges.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1299325 2018-07-03T09:56:39Z 2018-07-03T09:56:39Z Non-Surgical Recovery of Function: Not a Fantasy


“Improved voluntary hand function occurred within a single session in every subject tested.”

That’s the killer sentence from a new study soon to be published in the Journal of Neurotrauma. The principal investigator is our old friend, Professor Reggie Edgerton, who has been looking for ways to help people with chronic spinal cord injury since the late 1960s. I’ve met him a number of times in my own efforts to get my head around the difficulty of restoring function. In the small, intense universe of SCI research, he’s a sort of godfather — having mentored and trained a great many of the students currently on the hunt for therapies.

Until the first epidural stimulators were implanted in volunteers back in 2009 and 2010, no substantial functional recovery was happening with chronic injuries. You got back what you got back in the first year or two post-injury, and then you lived with it. Even the breakthrough moments of trials involving different kinds of cells were questionable, because they were invariably aimed at people with very new injuries.

The epidural stimulation work that I covered in my last column originated in Edgerton’s lab, but his new study is about what his team has christened tEMC, short for transcutaneous enabled motor control, also called transcutaneous stimulation.

There is no surgery, nothing implanted, no wires snaking through the body to a device embedded under the flesh. Instead, there are a couple of electrodes taped right onto the skin, not unlike the functional electrical stimulation units a lot of people use to ride stim bikes. The difference is that FES units are designed to push current directly into targeted muscle groups, while tEMC units push current toward the spinal cord itself. In that way, tEMC is just like epistim, and like epistim, it seems to work — in the sense that people do regain volitional movement.

In the fall of 2016, Edgerton published a report based on this question: If putting a stimulator into the lower back epidural space results in voluntary movement of feet and legs, would putting one into the cervical area result in the same for hands and fingers? The report included this line: “Herein we show that epidural stimulation can be applied to the chronic injured human cervical spinal cord to promote volitional hand function.”

Volitional hand function means successfully willing the hand to move.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1299324 2018-07-03T09:54:54Z 2018-07-03T09:54:54Z Another option for life-threatening allergic reactions


 In June 2017 the FDA approved a new form of emergency epinephrine called Symjepi, which may be good news for people who must be prepared in the event of a life-threatening allergic reaction.

Keeping epinephrine at the ready

Spring-loaded autoinjectors that contain epinephrine have been manufactured by several companies since 1987. In the last 30 years, changes in pharmaceutical companies and patent transfers resulted in a near-monopoly in the production of pre-filled epinephrine products. From 2009 to 2016, one company with a 90% market share dramatically increased the consumer cost for epinephrine injectors, resulting in an investigation and eventual settlement with the US Department of Justice.

Although not a spring-loaded autoinjector, Symjepi consists of two single-dose, pre-filled syringes of epinephrine, for the emergency treatment of anaphylactic and severe allergic reactions in adults. Each pre-filled syringe contains 0.3 mg epinephrine, the recommended initial dose for emergency treatment of anaphylaxis.

At an anticipated lower cost and small size, Symjepi could be an attractive addition to this slice of the pharmaceutical world. In November 2017, the company also submitted a second new drug application to the FDA for a junior version (0.15 mg dose for children between 33 and 65 pounds).

Given the growing prevalence of life-threatening allergies, a new, lower-cost alternative should place the availability of this potentially life-saving drug within greater reach.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1297541 2018-06-27T10:20:42Z 2018-06-27T10:20:42Z FDA Approves First Marijuana-Derived Drug


The FDA approved the first drug with an active ingredient derived from marijuana to treat rare, severe forms of epilepsy.

Cannabidiol (Epidiolex), an oral solution to treat seizures in Lennox-Gastaut Syndrome (LGS) and Dravet syndrome, was approved for patients two years of age and older.

"The FDA approval for cannabidiol is a landmark in American medicine," said Orrin Devinsky, MD, of New York University Langone Health, who helped lead the product's major clinical trials.

"This is the first time the government has approved a compound derived from the cannabis plant to treat any disorder -- in this case, severe epilepsy due to Dravet and Lennox Gastaut syndromes. This should allow patients to have access to consistent cannabidiol doses made to the highest quality standards."

Cannabidiol (CBD) is the first FDA-approved drug derived from marijuana and the first FDA-approved drug to treat patients with Dravet syndrome. It is a chemical component of the Cannabis sativa plant and does not cause the intoxication or euphoria that comes from tetrahydrocannabinol (THC). Epidiolex is a pharmaceutical-grade formulation; the approval was granted to GW Research Ltd.

LGS and Dravet syndrome are rare, severe, refractory epilepsy syndromes that emerge early in childhood. Both are linked to higher rates of mortality, primarily due to status epilepticus and sudden unexpected death in epilepsy patients (SUDEP).

An FDA advisory committee in April had recommended unanimously that Epidiolex be approved.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1297540 2018-06-27T10:17:15Z 2018-06-27T10:17:15Z ER Staffing Split Along Urban-Rural Divide


Emergency department staffing patterns have a gaping urban-rural divide, new researchshows.

In 2014 Medicare data, the distribution of emergency medicine physicians is strongly skewed toward urban areas. The researchers found that urban counties had a much higher proportion of emergency physicians -- 63.9%, compared with 44.8% in rural counties. The shortage of emergency physicians in rural areas is severe, said M. Kennedy Hall, MD, MHS, lead author of the research and an emergency department physician at Harborview Medical Center in Seattle.

"Rural area patients are now considered a disparity population, and rural areas are faced with an ongoing problem of insufficient numbers of emergency medicine-specialty physicians to staff their emergency departments."

Hall said earlier research has shown that rural areas have fewer incentives and more barriers compared with urban areas for ER physicians seeking employment. That research found that several factors influence job location choice:

  • Lifestyle
  • Access to amenities and recreation
  • ER volume and acuity
  • Family and spouse considerations
  • Access to specialists
  • Location of residency programs, which are mostly set in urban locations

In rural areas, research published in 2013 indicates that there also are budgetary and strategic factors at play in the employment of ER physicians. Some hospital executives reported that low ER patient volume and acuity did not justify hiring emergency medicine specialists. The executives also reported satisfaction with the care provided by their non-emergency medicine physicians and advanced practice providers.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1297538 2018-06-27T10:15:23Z 2018-06-27T10:15:23Z Reflex Syncope: What You Need to Know


Vasovagal syncope is one of three related syncopes that share a common pathophysiology. Together, they are called reflex syncope. The three are vasovagal, carotid sinus, and situational. Vasovagal is what just happened to your patient. Pain, seeing blood, emotional reaction, and prolonged standing are triggers of vasovagal syncope. Situational is triggered by urinating, coughing, or swallowing. Carotid sinus is triggered by stimulation of the nerve bundle located in the carotid sinus of the neck.

These neurologically induced losses of consciousness are brief and resolve without specific treatment. They are usually preceded by feeling dizzy, sweating, tunnel vision, odd feeling in the chest, or feeling very hot or very cold. The pathophysiology is an abrupt slowdown of the heart rate and a dilatation of the blood vessels leading to hypo-perfusion of the brain. Basically, the pump can’t get blood to your brain and you pass out…and you fall down.

First of all, it’s important to NOT PANIC. There is nothing you can do to fix it. Prepare for it by observing your patient immediately after giving an injection or drawing blood because these are prime times for a vasovagal episode. Make sure the patient is already seated and if you notice your patient is getting pale, sweaty, stuttering, or acting odd, gently guide your patient to a lying position with the feet up. Sometimes the loss of consciousness comes with muscle twitching that looks like a seizure.  Unlike a seizure, there is no prolonged postictal period, muscle clenching, or incontinence. While the loss of consciousness will resolve as soon as the patient lies (or falls) down, he or she will probably pass out again if he or she gets up so keep the patient under observation and lying down. It’s a good idea to get serial blood pressures so you can document the resolution. Every five minutes is fine. Your first blood pressure will be low with a heart rate in the 60s or high 50s. Over the next five to 15 minutes the vasodilatation and bradycardia will resolve without intervention but if you let the person stand up…boom! Don’t let the patient get up until they have a documented normal BP and HR. You can bring them a blanket, a drink of water, some juice, anything you like. Nothing is going to make it resolve any faster.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1297268 2018-06-26T10:31:09Z 2018-06-26T10:31:10Z Bariatric Patients May Need Microbiome Boost


Microbial richness remains diminished even 5 years after gastric bypass, banding.

French researchers pointed to a need to shore up the composition of the gut's microbiota ecosystem before or during bariatric surgery after they found persistent decreased microbial richness in severely obese patients.

The study found that both adjustable gastric banding and Roux-en-Y-gastric bypass improved microbial gene richness, but that microbial abundance was only partly restored in the majority of patients. Most had persistently low richness despite major metabolic improvement and weight loss, reported Karine Clement, MD, PhD, of Pitié-Salpêtrière Hospital in Paris, and colleagues in Gut.

"The lack of full rescue post-bariatric surgery calls for additional strategies to improve the gut microbiota ecosystem and microbiome-host interactions in severe obesity," the team wrote, suggesting that specialized diets, prebiotics, probiotics, or gut microbiota transfers before or after bariatric surgery might further improve microbial gene richness and metabolic health in severely obese individuals.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1296954 2018-06-25T09:49:01Z 2018-06-25T09:49:01Z MGH study finds generic drug can reverse type 1 diabetes long-term


Research at Massachusetts General Hospital looks increasingly like a long-term cure for type 1 diabetes, with a newly released study on Thursday showing patients have normal blood sugar levels eight years after a clinical trial.

In research published Thursday in journal npj Vaccines, patients who had been treated with the bacillus Calmette-Guerin (BCG) vaccine — an inexpensive, generic vaccine used around the world to prevent tuberculosis — had normal blood sugar levels eight years after the trial ended.

While it took three years for patients to see results from the vaccine, two doses of the drug spaced four weeks apart were still having a lasting impact eight years later.

“It’s kind of big news,” said Dr. Denise Faustman, director of the Massachusetts General Hospital immunobiology laboratory and principal investigator of the trial. “It’s the first trial showing (long-term reversal of diabetes), and more trials are on the way. But scientifically it’s pretty cool.”

The recently published study also details how the vaccine genetically alters the body’s white blood cells so they process glucose, making up for the pancreas’ inability to produce insulin to do the same. In type 1 diabetes — referred to in the past as juvenile diabetes — the immune system damages the pancreas and blocks the cells from producing insulin.

“It’s not only the discovery that something cheap in new cohorts brings down blood sugar, but why. We’ve discovered new pathways for lowering blood sugar,” Faustman said. “It’s an important discovery for the basic science of diabetes care. And by the way, we have a cheap BCG vaccine that seems to be doing it.”

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1296953 2018-06-25T09:47:22Z 2018-06-25T09:47:22Z Walgreens Teams Up With Humana in Senior Care Clinics


Insurance company Humana (NYSE: HUM) is partnering up with pharmacy retail business Walgreens Boots Alliance in a new pilot deal to operate senior-focused primary care clinics.

The deal will establish the clinics inside two Walgreens stores in Kansas City, Missouri, operated by Partners in Primary Care, a wholly-owned subsidiary of Humana. The venture could also expand to other markets over time, the companies announced Wednesday.

The clinics are scheduled to open this fall and will complement Walgreens pharmacy services and the the four Partners in Primary Care locations that opened in Kansas City in 2017. Partners in Primary Care is a primary medical group practice operating in South Carolina, North Carolina, Kansas and Missouri.

“This unique partnership supports Humana’s multi-faceted approach to health care in this community and is a continuation of our senior-focused care strategy which is centered on integrating care through clinical programs that intersect health and lifestyle,” Bruce Broussard, Humana president and CEO, said in a statement.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1296640 2018-06-24T11:28:16Z 2018-06-24T11:28:16Z Ultra-Processed Foods Up IBS Risk


Consumption also linked to greater risk of functional dyspepsia when IBS is present.

Adults with diets high in ultra-processed foods and beverages were at higher risk of developing irritable bowel syndrome (IBS) and concomitant functional dyspepsia (FDy), French researchers reported in the American Journal of Gastroenterology.

That suggests the need to incorporate the impact of highly processed convenience foods into nutritional guidelines, said Laure Schnabel, MPH, of Paris-Sorbonne University, and colleagues.

The team studied the consumption of ultra-processed foods -- the popular, shelf-durable packaged and convenience foods and drinks with industrial formulations and plentiful additives that are increasingly replacing freshly prepared meals, even in the haute cuisineculture of France.

Foods consisted of more than 3,000 widely consumed dietitian-analyzed items, ranging from fresh and unprocessed foods to minimally processed (canned vegetables) and ultra-processed products (fish sticks, chicken nuggets, cookies, and sweetened drinks).

For the investigation, which the researchers said they believe to be the first such study, the team assessed the association between these products and four functional gastrointestinal disorders: IBS, FDy, functional constipation (FC), and functional diarrhea (FDh), disorders estimated to affect up to 25% of the population in industrialized countries.

The study sample was 76.4% women, and the mean age was 50.4. Before taking a self-administered questionnaire centered on Rome III diagnostic criteria, participants completed at least three 24-hour food-intake records with details on breakfast, lunch, and dinner, plus up to three additional eating episodes."The low-fiber content of ultra-processed foods could be involved in the induction and/or exacerbation of digestive symptoms," the French investigators wrote. A recent systematic review and meta-analysis by Moayyedi et al found that soluble fibers supplements are effective in treating symptoms in IBS patients. Insoluble fiber -- found in fruits, vegetables, and legumes and fermented in the colon -- produce short-chain fatty acids that promote normal intestinal function.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1296365 2018-06-23T09:45:05Z 2018-06-23T09:45:05Z Why Is Everyone Getting Shingles?


The virus that causes shingles is cunning. It lies dormant inside the human body — often hiding in the nerve cells of the spinal column or the brain. Then, after decades of inactivity, it can remerge as a painful, blister-pocked skin rash.

“The way the virus is quiescent for decades and then reactivates — it’s unusual, but it makes sense from the perspective of the virus’ survival,” says Rafael Harpaz, MD, a medical epidemiologist with the CDC’s Division of Viral Diseases. Back when humans lived in small hunter-gatherer communities, Harpaz explains, viruses that depended on human hosts would have died out quickly if they infected everyone en masse. By lying in wait, shingles allows new generations of carriers to be born.

Harpaz has spent years studying the bug. A 2016 study of his in the journal Clinical Infectious Diseases helped shine a spotlight on a curious phenomenon: For at least the past 60 years, rates of shingles have been climbing. Compared to the period from 1945 to 1949, when 0.76 people per 1,000 developed shingles, rates climbed to 3.15 per 1,000 by the period from 2000 to 2007, his study found.

“[The rise] seems to be occurring across all age groups, and not just in the U.S.,” says Kosuke Kawai, ScD, an assistant professor of otolaryngology at Boston Children’s Hospital and one of Harpaz’s co-authors on the CID study. “There are studies in European countries, and also in Taiwan and Australia, that seem to show this same increase over time.”

While rates of shingles have been escalating for decades, Harpaz says the increase seems to be “plateauing” among older adults — a group that usually suffers from a higher incidence of shingles than younger people. (A new vaccine was introduced in 2006, and some experts suspect that may explain it.) But rates of shingles among those age 30 to 50 don’t seem to be leveling off.

From the late 1940s to the early 2000s, the prevalence of shingles among Americans younger than 50 more than quadrupled, Harpaz’s data shows. Some research suggests the incidence of shingles among younger adults may actually be gaining steam. At least anecdotally, shingles seems to be increasingly common among people in their twenties and thirties — a group that, historically, suffered from vanishingly low rates of the disease.

What’s fueling all this? Harpaz is stumped. “I have given this as much thought as anyone, and it remains a mystery to me,” he says.

Norm DeLisle
tag:ltcreform.posthaven.com,2013:Post/1296364 2018-06-23T09:41:35Z 2018-06-23T09:41:35Z Parkinson's drugs may lead to compulsive behavior

Increases in compulsive behavior were clear in the use of L-dope in people with Parkinson's in the 60's, but the level of the problem is evident in this research....


The production of dopamine can be excessively stimulated by taking drugs such as alcohol, cocaine, or heroin.

So, the neurotransmitter is at the heart of addictions and impulse control disorders ranging from substance abuse to sex addiction and gambling.

Such impulse control issues have been found to be common in people with Parkinson's disease. Pathological gambling and compulsive shopping, as well as compulsive eating and sexual behavior, have all been documented among patients with Parkinson's.

The drugs often prescribed to people with Parkinson's are the main risk factor for such compulsive behavior. Because dopamine is deficient in Parkinson's, the go-to treatment is dopamine agonists — which are drugs that activate the brain's dopamine receptors — or the well known levodopa, which turns itself into dopamine.

The researchers investigated 411 people who had received a Parkinson's disease diagnosis 5 years or under before the study, and who were clinically followed for at least 3 years.

Dr. Corvol and his colleagues interviewed the participants about any symptoms of impulse control disorders, such as compulsive shopping, eating, gambling, or sexual behaviors.

Of the 411 participants, 356 (or almost 87 percent) had taken dopamine agonists at least once since their Parkinson's diagnosis. At baseline, 81 participants (almost 20 percent) reported an impulse control disorder.

Specifically, 11 percent reported binge eating, 9 percent reported compulsive sexual behavior, 5 percent said that they shopped compulsively, and 4 percent admitted to having a gambling problem.

Of the 306 participants who did not report having any impulse control problems at baseline, 94 developed such a problem during the study. According to the scientists, this amounts to a "5-year cumulative incidence" of impulse control disorders of 46 percent.

By comparison, those who had never taken the drugs had a 5-year incidence of 12 percent. What is more, 30 participants with compulsive behaviors stopped taking the drugs during the study, which put an end to their symptoms.

Finally, higher doses of dopamine agonists and the duration of the treatment correlated directly with the risk of developing impulse control disorders.

Norm DeLisle