Health and Disability

2016 is here and we thought it would be a great time to examine the best Lupus blogs to enjoy for the New Year! Check out our top selections (in no particular order). If you feel that there is a blog that we missed, simply comment at the bottom of the page- we will review reader suggestions and add more blogs to this list on a rolling basis.

The new test involves attaching radioactively labeled antibodies to the infecting structures formed by the growing fungus, making it visible to doctors. The academics have used a combination of PET and MRI imaging, diagnostic technologies present in many hospitals, to identify the disease and to rule out lung infections caused by other pathogens such as bacteria or viruses.

Until now, doctors seeking to diagnose invasive aspergillosis had to take samples of tissue or fluid from the lungs of patients with weakened immune systems who displayed abnormal symptoms.

Researchers compared the effects of a specialized nutrition supplement with high protein (20 grams), HMB* (a muscle-preserving ingredient) and Vitamin D to a placebo supplement on rates of readmissions or death 90-days after leaving the hospital.

Results showed no significant differences between the two groups for the primary composite (i.e. combined) endpoint of hospital readmissions or death. However, the study individual components and additional analyses showed:

• A significantly lower (50 percent) death rate for those patients who received the specialized nutrition supplement. This lower incidence of death began at 30 days and continued for 90 days after participants left the hospital.
• Similar rates of hospital readmissions between the two groups.
• Improvements in other health outcomes including body weight, nutritional status and Vitamin D levels at 30 and 60 days after leaving the hospital, and continued body weight and nutritional status improvements at 90 days for the group taking the specialized nutrition supplement.

Patients diagnosed with migraine headaches saw a significant drop in their frequency when treated with medical marijuana, according to a new study from researchers at the Skaggs School of Pharmacy and Pharmaceutical Sciences at the University of Colorado Anschutz Medical Campus.

The study, published in the journal Pharmacotherapy, examined patients diagnosed with migraines and treated with medical marijuana between Jan. 2010 and Sept. 2014. It found the frequency of migraines dropped from 10.4 to 4.6 headaches per month, a number considered statistically and clinically significant.

Of the 121 patients studied, 103 reported a decrease in monthly migraines while 15 reported the same number and three saw an increase in migraines.

"There was a substantial improvement for patients in their ability to function and feel better," said the study's senior author Professor Laura Borgelt, PharmD, FCCP, BCPS. "Like any drug, marijuana has potential benefits and potential risks. It's important for people to be aware that using medical marijuana can also have adverse effects."

It was the late '80s, and young Martin Pistorius, growing up in South Africa, was mostly thinking about electronics. Resistors and transistors and you name it.

But at age 12, his life took an unexpected turn. He came down with a strange illness. The doctors weren't sure what it was, but their best guess was cryptococcal meningitis.

He got progressively worse. Eventually he lost his ability to move by himself, his ability to make eye contact, and then, finally, his ability to speak.

His parents, Rodney and Joan Pistorius, were told that he was as good as not there, a vegetable. The hospital told them to take him home and keep him comfortable until he died.

But he didn't die. "Martin just kept going, just kept going," his mother says.

His father would get up at 5 o'clock in the morning, get him dressed, load him in the car, take him to the special care center where he'd leave him.

"Eight hours later, I'd pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I'd wake up to turn him so that he didn't get bedsores," Rodney says.

That was their lives, for 12 years.

Joan vividly remembers looking at Martin one day and saying: " 'I hope you die.' I know that's a horrible thing to say," she says now. "I just wanted some sort of relief."

And she didn't think her son was there to hear it.

But he was.

"Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up," says Martin, now age 39 and living in Harlow, England.

He thinks he began to wake up when he was 14 or 15 years old. "I was aware of everything, just like any normal person," Martin says.

But although he could see and understand everything, he couldn't move his body.

"Everyone was so used to me not being there that they didn't notice when I began to be present again," he says. "The stark reality hit me that I was going to spend the rest of my life like that — totally alone."

He was trapped, with only his thoughts for company. And they weren't particularly nice thoughts.

"No one will ever show me tenderness. No one will ever love me."

And of course there was no way to escape. He thought, "You are doomed."

So he figured his only option was to leave his thoughts behind.

That was his first strategy — disengaging his thoughts — and he says he got really good at it.

"You don't really think about anything," Martin says. "You simply exist. It's a very dark place to find yourself because, in a sense, you are allowing yourself to vanish."

But occasionally there were things that elicited thoughts he could not ignore.

Like Barney.

"I cannot even express to you how much I hated Barney," Martin says.

Since all the world thought Martin was a vegetable, at the special care center where he spent his days he was often in front of the TV watching reruns of the children's cartoon hour after hour, day after day.

Then one day, he decided he'd had enough. He wanted to gain some small measure of control over his day. So he figured out how to tell time by how the sun moved across a room. That was the start.

Today there are 850,000 people with dementia in the UK with expectations that it will risie to 1 million people by 2025. Dementia has several types and everyone will experience the condition in different ways. Dementia is a progressive condition, which means that symptoms, which include problems with language, memory, understanding and thinking speed, will get gradually worse over time.

With no known cure it’s important that we find a way to help people to live well with dementia – technology may not at first glance seem like something that can help someone who is experiencing cognitive loss – however there are lots of people who are innovating for dementia care.

I have picked out a few of my favourite gizmos and gadgets that can ease the frustration of memory loss.

Researchers from KU Leuven, Belgium, have identified the cause of abdominal pain in patients with irritable bowel syndrome (IBS). As a result, they were able to select a medicine that could reduce or end that pain. This medicine is already used to treat hay fever.

IBS patients have extremely sensitive bowels associated with increased pain perception. This phenomenon is comparable to the increased sensitivity of our skin to hot water after sunburn. The exact cause of this hypersensitivity has long been unknown. Researchers already knew that the bowels of patients with IBS contain larger quantities of the substance histamine, but the specific link with hypersensitivity had not yet been made.

KU Leuven professor of gastroenterology Guy Boeckxstaens and his team have now shown that histamine has an impact on the pain receptor TRPV1. In IBS patients, histamine released in the gut makes TRPV1 hypersensitive. The researchers found that histamine interferes with the histamine 1 receptor, which is located on nerves that contain TRPV1. Importantly, they discovered that blocking the histamine 1 receptor prevented the sensitising effect of histamine on TRPV1. Taken together, these findings identify the mechanism behind IBS patients' increased pain perception.

On the basis of these findings, the researchers set out to find a solution to the problem. They designed a pilot clinical study in IBS to evaluate the effect of a substance that blocks the histamine 1 receptor on the nerves, so that the sensitivity of TRPV1 no longer increases. This substance, ebastine, is already used in hay fever medication. Patients who were treated with ebastine for 12 weeks had significantly less abdominal pain than patients from the control group. A follow-up study will test the effect of ebastine on 200 IBS patients.

Many female Fibromyalgia sufferers have difficulty finding a bra that doesn’t cause them pain. Fibromyalgia forums are full of women commenting that they have searched high and low for a bra that doesn’t aggravate their Fibro tenderness.

The experience of health care organizations serving some of the most complex populations (patients who are dually eligible for Medicare and Medicaid), has helped identify core components for this kind of person-centered care:

• Timely, Comprehensive Health Risk Assessments
  • Assessments should include functional status information, cultural and linguistic preferences and information about caregiver roles in order to create an individualized plan of care. 
• Incorporation of a Patient Preferences into the Plan of Care
  • A care plan must be developed in accordance with the patient’s values, goals and preferences, and with the patient at the center of the conversation. Care shaped by patient’s goals and preferences is important at every point in the care continuum but is particularly critical in palliative and end-of-life care.
• Seamless Care Transitions
  • Transitions should be safe, seamless, and person-centered across care settings. When preparing for discharge from the hospital, for example, the patient must be central to the planning process. Instructions must be clear and understandable to the patient and family caregiver (where applicable). The discharge plan must be communicated to other members of the patient’s care team, and appropriate post-discharge care should be arranged for the patient.
• Culturally Competent Care Teams
  • The care team should include diverse providers that understand the needs and preferences of the person being served. Aside from clinical providers, team members could include long-term service and supports providers, peer recovery counselors and/or community health workers.