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What You Need to Know About Muscular Dystrophy.

muscular dystrophy is common on disabilitymatch.co.uk

Muscles are protected by proteins. These proteins protect your muscles from damage. The genes in your body are bundled DNA used to make proteins that help keep your muscles from damage. More than thirty genetic diseases have been identified to impact the genes and cause damage to muscles.

The genes that make up the DNA are crucial to the entire body and specifically to the muscles. Those who suffer from Muscular Dystrophy (MD) have one or more of these genes that are faulty. Due to these damaged genes, the proteins that would normally create protective fibers malfunction and may even be missing. When this crucial protection is missing from the body, muscles get weaker and will have an impending impact on those who suffer from MD.

There are many types of Muscular Dystrophy and the particular type one has determines much of the factors the person will deal with as they battle this disease. The particular group of muscles in the body that are affected and when the problem is detected is really determined by the type of MD the person suffers from. Many of these factors differ from person to person and it’s not easy to categorize the responses.

One example is a condition termed autosomal recessive titan myopathy, which is an uncommon form of muscular dystrophy. This particular condition is the cause of progressive degeneration of muscles and causes lots of pain in the joints and muscles, atrophy, hyper mobile joints, and even heart problems.

Because titan myopathy is mostly misunderstood, it will take quite a long time for people to research and study how it impacts people. Dealing with a rare disease is quite a challenge, but there are ways to offset the pain and discomfort when people are sad or down. It is beneficial for people to raise pets, enjoy music, and engage in various hobbies that will lift up the person’s spirit.

Although there is much research going on dealing with the treatment of Muscular Dystrophy, more is needed and more awareness is crucial. This is one area where we all can get involved. Increasing the awareness and learning more about the disease goes a long way. Here are a few important factors you need to know about Muscular Dystrophy.

1. Understanding the symptoms

doctor explains muscular dystrophy symptoms

To get a clear grasp of the symptoms, we’ll look at the common indications for Duchenne muscular dystrophy, which is the most common form of this illness. For those who suffer from Becker muscular dystrophy, the symptoms are similar and may start in their twenties or later.

 

Here are some of the earlier symptoms:

  • Wading gait
  • Muscle stiffness and pain
  • Running and jumping with difficulty
  • Walking on toes
  • Problem standing or sitting
  • Late speech development coupled with learning disabilities
  • Falling frequently

As the conditions worsen:

  • Unable to walk
  • Shrinking of muscles and tendons
  • Breathing difficulty
  • Spine curvature
  • Cardiac problems due to weakened heart muscles
  • Eating and swallowing becomes difficult

These are the most common symptoms that need to be followed up with a doctor’s care. Proper testing and diagnosis will assist health professionals to begin treatment and help the person live a better life and a long life.

2. This disease gets passed down through the generations, but not always.

genetics for muscular dystrophy

Alterations in the genes which cause muscular dystrophy are commonly passed down through the family. So when someone is suspected to have MD, doctors will closely examine the family medical history of the patient to see if this condition can be traced. But some people get MD even without any family history, thus being the first in their family line to have this disease.

Duchenne muscular dystrophy is undoubtedly the most common form of the disease. It mostly affects young boys. But there are many forms of MD and it affects males and females. Here are some of the more common types:

Becker MD

Congenital MD

Distal MD

Emery-Dreifuss MD

Oculopharyngeal MD

Facioscapulohumeral MD

Limb-girdle MD

3. Some with muscular dystrophy never see their first birthday, but others live long lives.

wheelchair woman

Of course, the type of muscular dystrophy one has determines the symptoms. Whichever type of the disease a person has, there will be weakness and deterioration of the muscles and this continues to get worse as time goes on. Other symptoms are difficulty walking, respiratory problems, and curvature of the spine. There are even more symptoms such as heart problems, behavioral issues, swallowing difficulty, differences in the foot and contractors which are the shortening of muscles or tendons surrounding the joints. Some even suffer hearing loss and changes in facial appearance.

There is no type of muscular dystrophy that can be considered as common or classic. Some people begin to experience the symptoms as late as their middle age, and some suffer from it from birth. There are some who continue to walk throughout their lives, but most are not able to continue walking. Then there are those who are able to live a long life as well. Children often begin to suffer during their teen years and some babies cannot survive their first year.

4. Reaching a diagnosis requires several tests.

This rare condition shares its presentation with a host of other diseases. If a doctor begins to suspect that a patient has MD, a certain number of tests are required to rule out other factors. This doctor will also investigate your medical history and inquire about your family history as well.

Young patient is getting a diagnose from doctor

The doctor will search for markers of the disease in the bloodstream through blood and urine tests. A more thorough screening may be conducted through genetic testing to reveal any gene changes that might have caused the condition. Exercise tests will help to assess the patient’s muscular strength. Using a thin needle, muscle biopsies will help the doctor assess how the condition is progressing. Heart tests will measure the strength and the condition of the heart. There are even neurological tests that look for contractions and test reflexes. Along with this, an MRI can reveal additional information that helps the doctor to come to a better conclusion.

5. The treatment is to slow down MD, as it cannot be cured.

Health professionals work hard to help sufferers of Muscular Dystrophy to live comfortably and slow its growth. Unfortunately, there is no cure for muscular dystrophy and the attempt is to maintain a comfortable and functional life.

child rehab

A regular regimen of physical therapy helps to maintain muscles lissome and healthy. Those who have weakened face and throat muscles are helped through speech therapy. Some even opt for alternatives such as voice synthesizers to help them to speak clearly. Therapy on the respiratory system helps those with breathing trouble caused by MD. But if the person has late stage muscular dystrophy, they will need assisted ventilation.

Some patients require the help of a pacemaker for weakening heart muscles, and others require corrective surgery to repair contracture. Scoliosis sufferers can opt for the attachment of a metal rod to their spine when the pain from their curving spine becomes unbearable. Some drugs have been identified to help slow the progress of several types of muscular dystrophy and some amount of occupational therapy will help patients to move around their home and workplaces.

To make their condition more manageable and bearable, there are several additional things that can be done. Investing in a good bed or additional padding helps patients who are unable to find a good comfortable position to sleep. This improved comfort will help them to get better sleep. For those who can, swimming and some low intensity exercises will help with muscle strength.

6. Continuing research must be encouraged.

Genetic engineering

Muscular Dystrophy has been a daunting condition for many. It has caused disability, making it difficult to perform even their daily tasks. And for some, it has been fatal. There is a positive outlook due to the development of new therapies. These approaches help people to improve their lives as they live with MD.

A cutting edge therapy called Gene Replacement Therapy has the possibility of helping doctors to give new genetic materials to the cells. This would allow for the replacement of missing proteins that protect the muscle cells. This will result in restoring muscles that have been damaged as a result of MD.

There are two types of gene modification therapy that are being explored. One would help the defective gene to produce the protein that it previously could not produce. The other attempts to alter the production process of protein and change the patient’s Duchenne muscular dystrophy to Becker muscular dystrophy, which is easier to manage. Up to 80% of those who suffer from this condition could benefit from these new therapies.

Such cell-based therapy could be the answer to treat all the different types of muscular dystrophy. The result of this shows up as new healthy muscle stem cells allowing the person’s body to produce healthy muscle for better living.

Although muscular dystrophy is a very difficult disability many sufferers lad full and vibrant lives and use our site to find love and fulfilment.

 

 

 

Does ‘Brain Training’ Work For Children With Autism or ADHD? We look at the Evidence.

I was recently chatting to an expert in the field of autism and ADHD in children and the topic of ‘brain training’ came up.  This is a very ‘hot’ topic in the USA right now because its results are unclear and the costs for parents can be high.  Often, what catches on in the USA makes its way to our shores too.  So I was looking at some informed discussion that I found in NBC News and I am presenting it here for your consideration.

NBC News noticed that families have reorganized their lives and spent thousands of dollars to enroll in intensive after-school “brain training” programs that offer the promise of permanent changes to the human mind.

The programs are part of a fast-growing industry that’s based on the premise that targeted games and exercises can rewire the brain to boost memory, sharpen thinking or decrease the challenges associated with anxiety, autism, ADHD and other disorders. Brick-and-mortar training centers like Brain Balance Achievement Centers, which Izak attends, and LearningRx, Kyle’s program, are just one piece of a $2 billion global brain technology market that is increasingly going around the medical industry and marketing directly to consumers.

But the premise behind the programs has faced significant criticism from doctors and scientists who warn that some are making dubious claims. These personalized programs can cost $12,000 or more for six months of training, three days a week. Families have gone into debt or turned to crowdfunding sites to pay for them.

“They’re selling hope,” said Eric Rossen, the director of professional development and standards for the National Association of School Psychologists. “These organizations are not necessarily predatory, but they are definitely there and almost chasing the parents who are desperate, who are overwhelmed and who feel that they have no recourse.”

As the number of children diagnosed with ADHD and autism surges in the U.S., according to federal data, and as parents become exasperated with treatments that don’t work or involve medications that carry the risk of side effects, neurotechnology industry analysts predict the demand for programs like these will only grow.

NBC News spoke with more than a dozen scientists and experts who said that while there’s promise in some forms of brain training, the field is so new that many companies are making claims that go far beyond what they can prove.

That hasn’t stopped families from enrolling. NBCNews spoke to 22 parents of children who enrolled in Brain Balance or LearningRx, two of the largest one-on-one training programs, and many described positive results.

“LearningRx makes you use your brain in a different way than you do in school,” said Kyle’s mother, Alana Gregory, who says her son is focusing better and is less likely to hit other children than he was before he started the program in August. “It’s giving him skills to help when he is frustrated. And when he’s not as frustrated, we don’t have behavior issues.”

But other parents say they’ve seen only minor improvements — if any — despite months of hard work and high bills.

“The whole thing is a hoax,” said Atheer Sabti, who took out a $12,500 loan in 2017 to pay for a six-month Brain Balance program in Plano, Texas, to help his then 12-year-old son, who was getting into trouble and struggling to focus in school.

“They took my money,” Sabti said, “and my son was the same.”

Much of the growth in brain training is in apps and games that people use at home or in school, said Alvaro Fernandez, CEO of SharpBrains, a research firm that tracks the neurotechnology industry. The global market for direct-to-consumer technology grew from $475 million in 2012 to $1.9 billion last year, Fernandez said.

Those numbers don’t include franchises like Brain Balance or LearningRX, which Fernandez says are more difficult to track financially. But these centers are now in most major U.S. cities. Brain Balance has 108 locations and said it brought in $51.3 million last year. LearningRx has 70 centers in the U.S. as well as 85 centers called BrainRx around the globe. The company declined to provide revenue numbers but says it hopes to add eight U.S. centers and 20 international centers next year.

Other companies include Neurocore Brain Performance Centers, which made headlines in 2017 when U.S. Education Secretary Betsy DeVos disclosed that she and her husband are major shareholders.

Groups that advocate for people with autism and ADHD, including Autism Speaks and Children and Adults with Attention-Deficit/Hyperactivity Disorder, or CHADD, warn parents to be wary of companies like these that claim to address a long list of disorders without much scientific proof.

“We want science to drive treatment and intervention, not just anecdotes,” said Max Wiznitzer, a pediatric neurologist in Cleveland and the co-chair of CHADD’s professional advisory board.

Brain training companies are careful to comply with federal advertising laws, avoiding phrases like “treat” or “cure.” But some companies have run into trouble. LearningRx paid $200,000 in 2016 to settle charges by the Federal Trade Commission about deceptive claims.

LearningRx maintained that the FTC had unfairly applied medical standards to an educational company, but decided that fighting in court would have been too expensive.

Neurocore, a program that blends diet, exercise, clinical talk therapy and an intervention called neurofeedback that involves attaching electrodes to people’s heads, last year agreed to alter its marketing when an advertising review board objected to ads promoting cures for a host of disorders. But just last month, Neurocore was the subject of a complaintfiled with the FTC by the ad watchdog Truth in Advertising.

“They’ve continued to market in a really inappropriate way,” said Bonnie Patten, Truth in Advertising’s executive director. “They’re marketing unapproved medical devices as being able to treat ailments such as ADHD, anxiety, depression, migraines and memory loss when there’s no reliable scientific evidence.”

Neurocore CEO Mark Murrison points to research showing that neurofeedback works, though scientists say it has not been fully proven. He says Patten’s organization has never reached out to him and he doesn’t believe she understands his program.

His company has encountered skeptics, but “that’s to be expected when you offer an alternative to the status quo,” he said.

The FTC declined to comment.

Brain Balance centers are colorful, cheerfully decorated places, often located in shopping centers in affluent neighborhoods. They each have a cognitive room where students play video games that target memory or brain function and a sensory motor room filled with mats, balance beams and monkey bars.

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On a recent afternoon at the Brain Balance in Oxford, about 40 miles north of Detroit, classical music played softly as coaches guided students through exercises designed to stimulate the left or the right side of their brains.

The Brain Balance program is demanding, calling on families to reduce children’s screen time and to cut most sugar, gluten and dairy from their diets. But what has raised eyebrows among mainstream scientists are some unproven theories that drive the one-on-one training.

One of those theories is the popular notion that the right and left side of the brain have different influences on personality. Brain Balance claims that a right brain weakness can cause impulsivity and anxiety, while a left brain weakness can lead to poor math or reading skills. That’s why kids remove just one sock: Brain Balance believes that as a bare foot makes contact with the floor, the opposite side of the brain will get more stimulation. Metronomes and shakers are placed on the same side as the bare foot.

Another Brain Balance theory has to do with primitive infant reflexes, which are the instincts babies are born with to help them survive. The rooting reflex, for example, supports nursing by leading babies to turn toward objects that touch their cheeks. The moro reflex, which likely evolved to help infants cling to their mothers, causes babies to extend their arms and legs when startled.

Doctors say that most people outgrow these reflexes by the time they start preschool. Robert Melillo, a chiropractor and author who founded Brain Balance in 2006, asserted that children who retain reflexes face academic and behavioral struggles. Brain Balance tests children for eight primitive reflexes and has exercises that target each one. The one that targets the moro reflex has children stretch their arms and legs, then curl into a ball.

Other exercises, such as standing on one foot, target balance and coordination to promote “connectivity” in the brain, said Rebecca Jackson, Brain Balance’s vice president of programs and outreach. “I always like to tell the kids that it’s kind of like a workout for your brain,” she said. “We all have strong muscles and weak muscles, and it’s the same thing with the brain.”

George Anderson, a senior research scientist in the Child Study Center at Yale University, is doubtful of this approach. He is among several university-affiliated experts and medical professionals who reviewed the research on the company’s website and saw little proof to support the program’s theories.

There is evidence that people with neurological issues like ADHD and autism are, in fact, more likely to retain primitive reflexes than their peers, Anderson said. But that doesn’t mean that the Brain Balance exercises can eliminate retained reflexes, or that eliminating those reflexes would permanently reduce challenging behaviors.

“There’s just a lack of foundation for what they’re doing,” he said. “There are things that they really need to show, and I’m surprised they’re in business and have 100 centers if they haven’t shown that. Actually, I’m not surprised they’re in business if they can get $12,000 for doing this. It’s a way to make money. I’m surprised they don’t view this as unethical.”

Daniel Simons, a University of Illinois psychology professor who has scrutinized 130 papers cited by brain training programs, said there is “zero evidence” to support the Brain Balance theory about problems being caused by a weakness on one side of the brain. “This is pseudoscience at best,” he said.

Brain Balance CEO Dominick Fedele says science supports the program’s components, including the benefits of exercise for the brain. But he acknowledged that the company had not, until recently, attempted a comprehensive study comparing lasting outcomes for children who came through the program to a control group that did not. The company is now helping to fund such a study by a Harvard researcher.

“We know there are skeptics out there and we suspect there will continue to be, but we want to be able to show that this is a program that truly makes a difference,” Fedele said.

The company rejected the notion that selling an intervention that hasn’t been fully proven is unethical. Many families report positive results and the activities aren’t harmful, said Jackson, the Brain Balance vice president.

Asked about downsides, Jackson replied, “the downside is there is cost … or time and money involved.”

Melillo, who sold most of his stake in the company to a private equity firm several years ago, told NBC News that he honed the program over 10 years of working with children before he started charging for it.

“The idea that we always have to wait to make sure we have absolute proof makes no sense,” he said. “The only way you know it works is by using it.”

Parents who say the program doesn’t work resent the thousands of dollars they spent to test it out.

Srikanth Mamidi was so angry about not seeing lasting benefits for his autistic son after six months in a Brain Balance program in Cary, North Carolina, that he tracked Melillo down at a ribbon cutting for another center and confronted him.

“It was a time waster, an energy waster and a money waster,” Mamidi said.

The program had seemed “wacky” to him, but he and his wife were determined to avoid giving medication to their son, who was 11 at the time and was struggling to make friends and pay attention in class, he said. They were hopeful when they paid $10,000 for the program and committed to driving 40 minutes each way for the training sessions.

But Mamidi said the small changes they saw in the beginning, such as a slight improvement in their son’s ability to communicate, faded quickly.

When Mamidi confronted Melillo in 2016, the company founder just walked away, Mamidi said. “They are interested in making money rather than improving people’s lives,” he said.

Melillo said he did not recall the confrontation but notes that Mamidi is just one disgruntled parent among thousands who swear by the results.

Most Brain Balance reviews posted on Google and Yelp are glowing. Many franchise owners, including the couple who own the Oxford center, are former clients who tell moving stories about the relief they felt when they walked through the door after an overwhelming quest to help their children.

Izak’s mom, Patty Lopez, says her son is a different child than he was when he started Brain Balance last spring. Back then, he was prone to daily tantrums that would last for an hour or more. When he was briefly in kindergarten last year, he trashed the classroom so many times that a teacher described him as the “worst student that she had ever had in 18 years,” Lopez said.

The family has made sacrifices to adopt the program’s strict dietary and screen-time guidelines and make the hourlong drive to trainings. But it’s all been worth it, she said.

After seven months of Brain Balance, Lopez said Izak is doing well in school and now rarely has meltdowns, and she and her husband have been able to avoid giving him the medication that doctors wanted to prescribe. “It’s a huge change,” she said. “It’s more relaxed. We can play. We can have conversations with him now.”

Why do some families see benefits from brain training programs while others don’t?

Experts say there could be lots of reasons — all interventions, including medicine, affect children differently. Also, parents spending large sums of money can fuel the placebo effect, the belief that a treatment is working even if it’s not.

Children in the Brain Balance program are doing regular exercise and eating better than they may have been before, which can lead to better sleep. Many spend less time watching TV or staring at a phone. They’re getting lots of personal attention from Brain Balance’s coaches. And they’re developing and maturing.

“At the end of the year, they’re better and many times they would have gotten better on their own,” said Rossen, of the National Association of School Psychologists.

Many variables affect children’s lives — new teachers, new schools, new milestones. It can be difficult to know what accounts for behavioral changes.

Ben Forbush, 19, a freshman at Michigan State University, said Brain Balance helped him with depression and anxiety when he enrolled as a high school senior.

He started eating breakfast and getting more exercise. He significantly curtailed the time he spent on his phone, and slept much better.

“It might have been that the program enabled me to take care of myself a lot more than I had before,” he said. “I’ll never know which aspect it was. There’s a chance it could have been any of them. If it works, it works. It definitely helped me a lot.”

Crystal Hoshaw, a California mother, believes Brain Balance helped her son Noah, 7, with reducing repetitive behaviors related to autism and anxiety, such as sucking on his hands, that had been exacerbated by his parents’ separation and a move to a new home.

She credits Brain Balance with Noah’s improvements because his tics were related to the nervous system, which the program targets. Noah also may have benefited from the extra time he and his mother spent together during the 45-minute drive to Brain Balance in San Francisco. The two stopped for burgers in what became “little special dates,” she said. To Hoshaw, the exact source of Noah’s progress matters less than the results.

“It doesn’t have to be a hard line — a good or a bad or a magic bullet or snake oil. It doesn’t have to be so polarized,” she said. “It can just be one part of a holistic, well-rounded approach to helping a kid.”

The LearningRX training center in Colorado Springs buzzed with activity on a recent afternoon as seven students and their trainers worked together at small tables. The noise level is intentionally loud to train clients to tune out distractions.

One child bounced on a mini-trampoline as she tried to recall all 45 U.S. presidents. Another child tossed a ball with his trainer as they took turns reciting the alphabet in time with a metronome, an exercise designed to help him multitask.

Many of LearningRx’s brain games are similar to exercises that psychologists use to conduct IQ tests, including recalling numbers or shapes. They’re given easy tasks to start and are rewarded with high fives from their coaches and points they can save up to buy prizes. When they can recite all of the presidents, their picture is posted on the wall.

LearningRX, which was founded in 2003 by an optometrist, initially as a vision therapy program, says it has always done research to show that the program can, for example, help the 29 percent of clients who have ADHD. The company has made a greater effort to publish that research since the FTC charges.

In the past three years, the company has published 11 peer-reviewed studies, said Amy Moore, an educational psychologist and research director of the LearningRx’s research arm, the Gibson Institute of Cognitive Research. Among them is a small clinical trial published in a neuropsychiatry journal that found statistically significant improvements in a group of seven clients who had ADHD compared to a control group of six people with ADHD who did not attend LearningRx.

“‘Prove’ is not in our language, but we have a convergence of evidence that shows that the program changes test results,” Moore said. “It changes connectivity in the brain and it changes real life.”

But questions persist.

“I would want a lot more evidence,” said Thomas Redick, a psychology professor at Purdue University who has reviewed hundreds of brain training studies. He was among several experts who spoke with NBC News who noted that the peer-reviewed controlled trials and other studies touted on LearningRx’s website were fairly small or lacked methodological rigor, such as measures to control for the placebo effect.

Redick added that he doesn’t doubt that LearningRx clients do better on IQ tests after months of training, but he questioned whether the benefits translate to other settings. He is skeptical of LearningRx’s claims that its clients have improved at school.

“You can learn mnemonic strategies that are effective but that only works for those materials,” he said. “It’s not changing whether or not you have ADHD.”

Still, Alana Gregory, Kyle’s mom, said LearningRx has built confidence in her son, which has improved his behavior.

“There is no magic pill,” she said, “but you have to find out what works for your individual child and go with it.”

So, my question to you, the disabilitymatch community here in the UK is are these programmes a ‘hoax’ or do they offer the promise of a pre-emptive strike against childhood anxiety, autism and ADHD?    My own sympathies lie with Thomas Redick who feels there is still a very long way to go before professionals can whol-heartedly endorse the efficacy of these ‘brain-training’ therapies.

This content was originally published here.

disabilitymatch.co.uk blogger

News About Disabilitymatch Media Activity

disabilitymatch.co.uk websiteWell we have been busy this last month.  I have always enjoyed blogging about disability issues and over the years many websites and magazines have featured my articles.  This Summer has been particularly exciting with guest appearances ion a whole batch of top websites.  I was especially excited to have my articles published in Able Magazine which is the largest site/magazine for disabled living.  I even managed to get a podcast interview with Claire Foxton who runs their social media operation.   They published 2 of my blog pieces recently:  One about Autistic singles and further post about dating with a colostomy bag which is a topic that doesn’t get anywhere near enough coverage.

I was also published by independentliving site where I discussed the problems of dating after a spinal injury.  Their website fascinates me, there is just so much good information about adaptive living and today I interviewed their founder Frances Leckie about the site and how it functions.  It has been around for more than 20 years so it is a pioneer in the disability market.  Another hugely influential American website goodmenproject.com published a version of my spinal injury article which brings disabilitymatch to an even larger audience.

So why do I spend so much time blogging for different website?  Well, in this crowded online world sites like disabilitymatch have to stand out from the crowd and develop a presence beyond their own 4 walls.  We are without doubt the largest of the uK disabilitydating sites and much of that comes from blogging and maintaining a strong social media presence.  We have always tweeted @disabilitymatch and now we are doing more on instagram @disabilitymatch and of course our facebook page facebook.com/disabilitymatch.   That way we can stay in contacted with our members and the wider uK disability community.

Do please visit us, follow us  and participate in our growing success.

David

 

 

Advances in Parkinson’s Research Holds Hope For the Future.

 

Parkinson’s is a condition that is quite common amongst disabilitymatch members so we felt that this article that we came across on the Neurology website would be of general interest to you.   The evidence presented in this Swedish research is compelling and backs up stuff I have read elsewhere in recent months.

Scientists have found mounting evidence that Parkinson’s could start in the gut before spreading to the brain, with one study in 2017 observing lower rates of the disease in patients who had undergone a procedure called a truncal vagotomy.

The operation removes sections of the vagus nerve – which links the digestive tract with the brain – and over the course of a five-year study, patients who had this link completely removed were 40 percent less likely to develop Parkinson’s than those who hadn’t.

According to the team led by Bojing Liu from the Karolinska Instituet in Sweden, that’s a significant difference, and it backs up earlier work linking the development of the brain disease to something happening inside our bellies.

If we can understand more about how this link operates, we might be better able to stop it.

“These results provide preliminary evidence that Parkinson’s disease may start in the gut,” said Liu.

“Other evidence for this hypothesis is that people with Parkinson’s disease often have gastrointestinal problems such as constipation, that can start decades before they develop the disease.”

The vagus nerve helps control various unconscious processes like heart rate and digestion, and resecting parts of it in a vagotomy is usually done to remove an ulcer if the stomach is producing a dangerous level of acid.

For this study, the researchers looked at 40 years of data from Swedish national registers, to compare 9,430 people who had a vagotomy against 377,200 people from the general population who hadn’t.

The likelihood of people in these two groups to develop Parkinson’s was statistically similar at first – until the researchers looked at the type of vagotomy that had been carried out on the smaller group.

In total, 19 people (just 0.78 percent of the sample) developed Parkinson’s more than five years after a truncal (complete) vagotomy, compared to 60 people (1.08 percent) who had a selective vagotomy.

Compare that to the 3,932 (1.15 percent) of people who had no surgery and developed Parkinson’s after being monitored for at least five years, and it seems clear that the vagus nerve is playing some kind of role here.

So what’s going on here? One hypothesis the scientists put forward is that gut proteins start folding in the wrong way, and that genetic ‘mistake’ gets carried up to the brain somehow, with the mistake being spread from cell to cell.

Parkinson’s develops as neurons in the brain get killed off, leading to tremors, stiffness, and difficulty with movement – but scientists aren’t sure how it’s caused in the first place. The new study gives them a helpful tip about where to look.

The Swedish research isn’t alone in its conclusions. In 2016, tests on mice showed links between certain mixes of gut bacteria and a greater likelihood of developing Parkinson’s.

What’s more, earlier in 2017 a study in the US identified differences between the gut bacteria of those with Parkinson’s compared with those who didn’t have the condition.

All of this is useful for scientists looking to prevent Parkinson’s, because if we know where it starts, we can block off the source.

But we shouldn’t get ahead of ourselves – as the researchers behind the new study point out, Parkinson’s is complex condition, and they weren’t able to include controls for all potential factors, including caffeine intake and smoking.

It’s also worth noting that Parkinson’s is classed as a syndrome: a collection of different but related symptoms that may have multiple causes.

“Much more research is needed to test this theory and to help us understand the role this may play in the development of Parkinson’s,” said Lui.

If you suffer from Parkinson’s then do please comment on this article as we love to get feedback from our community.

 

 

Do You Have Sciatica? What Causes It? What Can You Do About It?

 

Sciatica is a term used to describe radiating pain that travels along the path of the sciatic nerve, running from your lower spine through the buttock and down the back of the leg. It flares when the sciatic nerve is irritated or pinched by any of a range of problems in your lower back.

Many people are completely disabled by sciatica and unable to function normally, yet sciatica is not that well understood as a disability.  In this informative post based on material from spine-health.com we look at the symptoms and the possible treatment options.

Sciatica is nerve pain

There are a series of nerve roots that exit from your lower spine; when any of these nerve roots on either side of your lower spine becomes irritated or pinched, pain may radiate from the nerve root to the sciatic nerve. The pain may travel down the sciatic nerve – through the buttock and down the back of the leg and into your foot and/or toes. It typically occurs only on one side of the body.

The pain is unique – often described as a shooting, searing pain that is felt deep in the buttock and radiates down the back of the leg. Sometimes, numbness, tingling, or burning is felt along the nerve. Some people describe the nerve pain as electric-like. Conversely, sciatica symptoms may be experienced as more of a constant, dull pain.

The medical term for sciatica is lumbar radiculopathy.

The most common causes of sciatica in younger adults tend to be a lumbar herniated disc, degenerative disc disease, or isthmic spondylolisthesis.

In adults over age 60, the most common causes tend to be degenerative changes in the spine, such as lumbar spinal stenosis or degenerative spondylolisthesis.

The term sciatica is often misused, and people may be tempted to self-diagnose and self-treat the wrong cause of their sciatica. However, knowing the underlying cause of your sciatica symptoms is important in order to get the right treatment.

Many people refer to any type of leg pain as sciatica, but in fact, there are many causes of leg pain that are not medically classified as sciatica and need to be treated differently.

Piriformis syndrome syndrome also causes symptoms similar to sciatica. It occurs when the piriformis muscle in the buttocks irritates the sciatic nerve, which can cause pain to radiate along the path of the nerve into your leg. This type of pain is technically not sciatica, because the nerve irritation does not originate in the lower back. Treatment for piriformis syndrome usually includes anti-inflammatory medication and specific physical therapy.

Self-diagnosis of sciatica is not a good idea

As many underlying conditions can cause sciatic pain, it is important to consult a doctor for a clinical diagnosis. While rare, sciatica-like pain may be caused by medical conditions that need immediate treatment, such as:

While the vast majority of causes of sciatica symptoms are not serious, it is always advisable to see a doctor for any troubling symptoms.

If you feel symptoms of pain in your buttocks or leg, or numbness, tingling, or other neurological symptoms in your leg, it is important to see a doctor for clinical diagnosis that identifies the cause of your symptoms.

Like any disability, sciatica can limit your ability to enjoy life and work and play effectively.  If you suffer from sciatica and wish to share your experiences then please visit our facebook page and post your thoughts.

A Glimmer of Hope For IBD Sufferers

 

Crohn’s and IBD are terribly upsetting conditions for many of our disability community.  This recent article in Science Daily shines a beacon of hope into an effective treatment for this condition.

Now, researchers at Washington University School of Medicine in St. Louis have found a compound that may treat IBD without directly targeting inflammation. The compound tamps down the activity of a gene linked to blood clotting. They discovered that the gene was turned on at sites of intestinal inflammation and damage, and blocking its activity reduces IBD symptoms in mice.

Notably, the gene is especially active in people with severe disease and in those who don’t respond to potent biologic drugs known as TNF blockers that are prescribed to treat severe IBD.

The findings, published March 6 in Science Translational Medicine, may be a path to new therapeutic options for people whose IBD can’t be controlled effectively with current treatments.

“There’s a lot of interest in novel therapeutic approaches for IBD because inhibiting inflammatory molecules doesn’t work for all patients,” said senior author Thaddeus S. Stappenbeck, MD, PhD, the Conan Professor of Laboratory and Genomic Medicine. “We found a unique target that’s not an inflammatory molecule, and yet blocking it reduces inflammation and signs of disease, at least in mice. If further research bears out our findings, we think this target could be helpful to a greater number of patients.”

More than 1 million people in the United States have IBD, which includes Crohn’s disease and ulcerative colitis. Both conditions are marked by out-of-control inflammation but in different parts of the gastrointestinal tract. They typically are treated first with general anti-inflammatory drugs such as corticosteroids. In more severe cases, people are given more potent immune suppressors such as TNF inhibitors, which neutralize an important immune protein. TNF inhibitors are sold under brand names such as Humira and Remicade. Immunosuppressants can be very effective, but they do have side effects such as increased risk of infection and cancer.

While researchers have focused countless hours on finding drugs to dampen IBD patients’ unruly immune systems, there are other untapped sources for therapies of the disease — such as the behavior of the epithelial cells that line the gut. Stappenbeck and first author Gerard Kaiko, PhD, a former postdoctoral researcher in Stappenbeck’s lab who is now at the University of Newcastle in Australia, realized that overlooked aspects of IBD might be a rich source of new drug targets.

To find genes that play a role in IBD through noninflammatory pathways, Kaiko, Stappenbeck and colleagues analyzed 1,800 intestinal biopsies from 14 independent, publicly available IBD datasets. The biopsies came from different studies, variously comparing people with IBD to healthy people; samples taken from inflamed and unaffected parts of the intestine; or people with mild, moderate and severe cases of IBD.

This analysis revealed that a group of genes related to blood clotting are turned on in IBD. The finding fits with the longstanding observation that people with IBD are two to three times as likely as the general population to develop problems with blood clots, with the risk especially high during a flare-up.

With the help of co-author Jacqueline Perrigoue, PhD, and colleagues at Janssen Research & Development, the researchers whittled down the list of genes to a few that played a role in both inflammatory and epithelial cells. One in particular stood out: a gene called SERPINE-1. This gene and its corresponding protein were found at high levels in inflamed parts of the gut in IBD patients. Both also are involved in an early step in the blood-clotting process but hadn’t been linked to inflammation previously.

To verify the role of the gene and its protein in gut inflammation, the researchers gave mice a chemical that causes gut inflammation similar to IBD, or a harmless chemical for comparison. The mice that received the damaging chemical lost weight, their intestines had signs of injury with many inflammatory cells and proteins, and the SERPINE-1 gene was expressed six times higher than in mice that received the harmless chemical.

When the mice with IBD-like symptoms were treated with a compound called MDI-2268 that blocked the activity of the protein, they fared much better. They lost less weight, and their intestines showed less destruction and inflammation than mice that were treated with a placebo. The compound was developed by Daniel A. Lawrence, PhD, of the University of Michigan.

“What’s most exciting here is that SERPINE-1 and its protein seems to be most highly expressed in people with the most severe disease and those who don’t respond to immunosuppressive biologics,” Stappenbeck said. “No one’s ever thought of targeting something like this. But here we’ve found something that might help lots of people with IBD, especially the ones who aren’t benefiting much from current therapies.”

We will keep our readers up to date on any further developments in the field of IBD and related disabilities.

The Nightmare of Fibromyalgia – Is It affecting You?

Do you hurt all over, frequently feel exhausted, can’t seem to ever feel “rested” after a night’s sleep, don’t respond to any of the recommended medications from your family physician, and no test seems to uncover anything specific? If this sounds like you, it is possible that you are suffering from fibromyalgia (FM). FM is a chronic/long-term condition including generalized pain in the muscles and joints, usually on both sides of the body above and below the waist, with associated “tender points” where moderate to firm pressure causes pain classically in the following locations (but anywhere is possible):

In fact, a generalized hypersensitivity is common and it seems like you just can’t turn off your brain. It can begin with a physical or an emotional event but doesn’t have to, as it can also seem to come out of nowhere. In the United States, about 2% of the population, mostly women and especially with increasing age, are affected by FM.  The statistics are similar in the UK. One common underlying clinical finding is non-restoring sleep with frequent interruptions during the night. Sleep disorders that are associated with FM include restless leg syndrome and sleep apnea.

One study including 168 FM patients associated fibromyalgia with a disturbance in the central nervous system (CNS). Researcher performed various tests, including an auditory brainstem response (ABR) which tests the cranial nerve that is responsible for our hearing and balance; a test that measures for eye movements primarily when sleeping; and a third test that measures balance functions. The following is a list of the results from the study:

Some studies also report that similar symptoms associated with whiplash associated disorders (WAD).

Fibromyalgia and Vitamins – What’s the Connection… Fibromyagia is a debilitating disease that affects millions of English and Americans, with most sufferers being female. Research has explored a lot of different possibilities, but fibromyalgia remains a poorly understood disorder with no known single cause. Fibromyalgia can be more thought of as a global disease with likely many different factors coming tog…

At Last! Emojis for the Disability World. I Give That a Smile and a Wink!

It is while since I have blogged on this site.  Most of my activity has been on Facebook/Twitter and youtube recently.  But now and then i like to add some posts here.  One of the things that has bought me great pleasure recently is the introduction of emojis for the disabled community.

The introduction of image-based characters such as hearing aids, wheelchairs, prosthetic limbs and guide dogs will help redress the underrepresentation of disabled people on the emoji keyboard, while there will also be a wider range of mixed-gender and ethnicity couples for users to choose from.

Disability rights campaigners welcomed the new accessibility-themed icons. “Love them or hate them – emojis have become part of our everyday digital lives,” said Phil Talbot, the head of communications at disability equality charity Scope. “Social media is hugely influential and it’s great to see these new disability-inclusive emojis. Up to now disability has been greatly underrepresented.”

 

I have chatted about these emojis with several friends in the disabled world and reactions have generally been positive. For me, personally, the hearing aid emoji is very handy as I have a hearing problem and sometimes wish to express it graphically from my phone.   Also I can easily reference wheelchairs and guide dogs from the emoji list which is very cool.

Remember you can always reach me on twitter @disabilitymatch or  facebook/disabilitymatch

 

Have a great day

 

David

 

 

 

Things of Interest at Disabilitymatch

Hi, this is a bit of a mish mash of a post but it is sunday I was looking back on things that have been happening recently.  Most importantly, I just released our latest podcast episode which features a single interview with Simon Mulholland from Pny Axes.

It is a relaxed chatty interview with Simon who is a crazy inventor based in Scotland.  He has invented a carriage to let wheelchair users experience pony trekking and really explore some wonderful landscapes.  With a Mulholland carriage wheelchair users can sea seals up-close on the shoreline.  If you go to our podcast page you can get all the contact details.

I was feeling a bit creative myself this week so I created a short video about dating with mental illness – I hope you find it interesting.

We know that disability can be visible and invisible so we are very keen to promote and champion our many members who have a non-visible challenges such as anxiety and depression and more clearly defined   problems as bipolar disorder.

 

 

Valentines Greetings and Disabilitymatch at NAIDEX 2018

I am very excited that NAIDEX have asked me to return again in April to give a seminar about disability dating.  This is really exciting for me and it gives me a great excuse to go up to Birmingham and meet up with all my friends and contacts in the uK disability sector.  I will be making a huge effort to present some great seminar material at the show so I do hope that some of you will attend.   We had a good turnout in 2017 and most of the participants had a great laugh.  The organisers of the NAIDEX show seem very keen to bring the social aspects of disability into the show which is a great improvement over the old system where everything seemed geared towards the latest equipment and nothing very human.

I will probably be based at the disability horizons stand with my great chum the amazing Martyn Sibley so if you are visiting the show you can leave a message for me with his team.

Just to bring you up to speed with disabilitymatch, we tend to chat to our community on Facebook and Twitter these days but now and then I like to keep this little blog going.  If you are not following us on facebook then you should, we post regularly and try to bring you lots of interesting disability news.   We tweet most days and I am just working on our Spring Podcast.  I hope to have the podcast out in the next few weeks.

So, this was just to alert you on NAIDEX and I do hope that you will attend my seminar and have a chat with me.

Love to all and a very happy Valentines