October 2010

Is That One of My Names?

There are a lot of words that describe me, some of which I like better than others. I guess my favorite title the past seventeen years has been “Nana.” I’ve also enjoyed being known as a speaker/writer and especially as a Christian. I’ve given myself some titles like hard of hearing, disabled, or handicapped. There are things that happen and the right descriptive phrases just don’t seem to always fit.

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I get a lot of funny emails that discuss the good and bad things about being a senior citizen. I’ve been a disabled widow since age 45 and more of those do apply than don’t. I’ve been riding a scooter since 1993 right after my husband died and I moved to town. Since I was not driving and had sold our vehicles, a scooter was answer to a prayer I had not even prayed. God knew it would take me where a wheelchair without a caregiver would not.

So my first scooter became my legs to the apartment pool, the grocery and drug stores, the mall and several restaurants. It was also a great babysitter for my new grandson and later his little brother.

AMS Vans wheelchair vanThere was no thought at that time to the need of a handicapped conversion van. When I became well enough to drive in 1996, I bought a small car and had a lift put on the back for the scooter when I wanted to take it with me. One of the first problems I discovered with that was driving in bad weather. I even ruined an expensive cover driving on the interstate in a torrential rainstorm.

So a couple other terms have applied to me…hindsight and foresight! If only I had bought a ramp van back when prices were lower and before I gave my money away. As things changed over the years it would have worked during the good and bad times. Even during the time I couldn’t drive, it would have been better to have had the ramp for my caregivers to use.

And now in weak times, once again, the scooter and ramp van fit my needs like a perfect pair of gloves. The scooter is a substitute for my feet and legs. Some folks comment because I don’t have on shoes but in the summer my feet swell. Why waste my money on shoes? Just call me the “shoeless lady.”

The largest disadvantage a scooter has is how close one is to the ground. That can be an advantage when someone needs to pick up something they drop. It is also an advantage when one has to transfer to a low chair or toilet.

grocery-store

The disadvantage in a grocery store is that everything I need is always higher than I can reach. Asking for help is a good lesson to learn, but can be frustrating when no one is available. One example of my frustration is that my favorite crushed pineapple is always on the top shelf and whole slices of pineapple are near the bottom.

And this is where senior terminology comes in. Some seniors are hunched over or have lost inches due to osteoporosis. So here I am in the world of “little people” but I can’t climb like they can and someone who comes up with all these emails has a new title for senior citizens and, of course, scooter riders.

I had an aquarium once and I knew there were fish called “bottom feeders.” I didn’t know that someday this would be a new name for me when shopping in a grocery store. So a new name for me is “bottom feeder;” I’ve always said “if the shoe fits, wear it!”

101-Year-Old Wins Discrimination Settlement Against NYC Salon

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In April of 2008, Nettie Lobsenz, 99 at the time, went to a Mayra’s Beauty Salon in New York to get her hair done.  As the woman and her daughter approached with Nettie in a wheelchair, the owner told a young aid at the door not to allow them inside.  The daughter, Juliette Gould, 72 at the time, was told that they weren’t allowed in because her mother couldn’t walk.  Juliette left to get her mother’s walker, but they still weren’t allowed in, being told it was a liability issue.  Nettie, now 101, complained to the city’s Human Rights Commission that she was turned away for arriving in a wheelchair, and the parlor was forced to sign a conciliation agreement for $7,500 to the now 101 year old patron.

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“When the owner or the manager of the salon saw us approaching, she came to the door and told the young woman not to let us in and she didn’t let us in,” Juliette said.

“They closed the door and looked passed us seeing what’s going on,” Nettie said.

“I said, ‘Is there a problem with the wheelchair? ” Juliette said. “The woman said, ‘The boss doesn’t want to let her in because she can’t walk,’ ” Juliette recalled.

That was when Juliette left to get a walker for her mother, but the parlor still refused to serve her.

“We just don’t want her in [here],” Juliette quoted her as saying, adding that she was later told there were “liability issues.”

Juliette said her mom was “more puzzled than anything else” at what happened at the parlor.

“She didn’t quite understand why the woman was so dead set against her getting in,” Juliette said.

The salon, which denies any discrimination, also has 30 days to post the sign saying it welcomes people with disabilities.

Watch the video below:

Is Alzheimer’s Disease (AD) Contagious? Surprising Results

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Researchers in Tübingen, Germany have discovered that certain protein plaque deposits that cause Alzheimer’s disease can be infectious not only when they are injected directly into the brain, but also when they are injected anywhere else in the body. By injecting healthy mice with the diseased gray matter, those mice develop Alzheimer‘s-like symptoms within just four months time.

In 2006, a team of German scientists reported that injection of dilute extracts from human Alzheimer’s brain tissue, or from Abeta-laden mouse brain tissue, into the brains of transgenic mice (genetically modified to produce the human form of Abeta) stimulated Abeta build-up within the mouse’s brain. In this month’s issue of Science, the same team of scientists have discovered that the healthy mice can be injected into their stomachs, legs, or anywhere on the body and have the same affect on the brain.

Alzheimer’s is predicted to affect 1 in 85 people globally by 2050. Research indicates that the disease is associated with hard, neurofibrillary tangles of mis-folded protein fragments called beta-amyloid peptides (or Abeta) that form plaques between the nerve cells in the brain. Healthy brains are able to clear these useless proteins and escort them to be reabsorbed back into the body. In the case of Alzheimer’s patients, however, their brains become unable to clear away these proteins, which then build up and harden as plaques.

Alzheimer's amyloid plaques via Getty Images

These plaques cause degenerative tissue damage, cell death and brain shrinkage, which cause patients to gradually lose their cognitive abilities. Although the time frame is different for each patient, eventually motor functions are lost as well, and the patient becomes unable to walk, needs a wheelchair and ultimately becomes bedridden, finally succumbing to pneumonia and dehydration. At this time, the cause and the cure for the disease are both unknown, but discovering that these proteins can act as prion-like pathogens offers so much more possibility for research.

Prions are infectious agents that are made up mostly of protein, as compared to the more complex three-part virus molecule, and fatally affect the structure of the brain in much the same way as Alzheimer’s disease. Prions cause many different diseases in mammals, but the most common are Creutzfeldt-Jakob disease (CJD) in humans and bovine spongiform encephalopathy (BSE, or “mad cow disease) in cattle. Like Alzheimers, there are no known cures for prion diseases at present.

The development of Alzheimer’s disease in otherwise healthy mice indicate that there is a previously unknown mechanism that allows infectious tissue to move around the body and pass through the barriers that protect the brain. Although they do not know how this occurs, they do know that the disease does not have to be injected directly into the brain for the disease to occur. It does, however, occur more rapidly when directly introduced into the brain than in any other part of the body.

This news does not indicate that one can “catch” Alzheimer’s disease merely by having someone with the disease brush against you or cough on you, because the disease can only be transmitted via infected brain matter entering directly into the bloodstream. And because we are not cannibals, this is highly unlikely to ever occur. What this does mean is that a new door has opened for Alzheimer’s research into the causes and onset of the AD and for the similar form of dementia, cerebral amyloid angiopathy (CAA).

Source:
newscientist.com/article/dn19607-alzheimers-protein-may-spread-through-infection.html

Woman Walks at Revival After 23 Years in a Wheelchair

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Gospel singer and minister Delia Knox from Alabama was hit by a drunk driver on Christmas Day 23 years ago, and she was paralyzed from the waist down.  On August 27, 2010, Delia went to a revival and shocked the audience by getting up out of her chair and walking again.

Delia claims that during the revival, she heard a voice telling her to “Just get up”.  After being prayed over, she rose from her wheelchair and began moving her legs.  With assistance, she walked in front of everyone, amazing them.

The video was captured and posted to youtube.  She has since become a global sensation with invitations from around the globe for her to appear as a guest speaker.

This past Thursday Delia returned to Buffalo, New York, for the first time without a wheelchair.  Family and friends gathered around her mother’s house waiting for her arrival.  Her mother, Amelia Roman, said that she has prayed for Delia to be able to walk again every single day since the accident.

“My house is a house of miracles!  I tell you, there is only one way, the Lord.” said Amelia.

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Her family cheered as Delia pulled up to the house wearing high heels and walked up the stairs to the front porch with minimal assistance.  Her mother wept with joy as the two embraced each other.

Delia said, “That was one of my things. I wanted to walk up the stairs and see my mom and dad who instilled faith in me, and I thank God they’re alive to see this.”

Carlos Benitez said, “It’s just beautiful. I can’t believe it, you know?”

“Our faith is God does miraculous things, and he’s done it here,” said Casimiro Rodriguez.

Delia claims she had no idea that on the night she was wheeled into the revival she’d leave on two feet.

“I’d stay away from revivals because I’ve been pulled, plopped and dropped. This time I walked; I wasn’t dropped,” said Delia.

Miracle?

Delia said, “All I know is I couldn’t walk, and now I walk.”

A lot of people believe in the miracle, and of course there are a lot of skeptics that also say that it is highly unlikely.

james-randi

James Randi has been offering a million dollar prize through the James Randi Foundation for many years to anyone that can demonstrate “any psychic, supernatural, or paranormal ability of any kind under mutually agreed upon scientific conditions.”  So far, he says, not a single claim of hundreds of miracles or supernatural events has turned out to be true.

Randi viewed the video of Roman-Knox on YouTube and said it was a “case of whether she couldn’t walk or just didn’t” prior to Aug. 27.

“Where’s the evidence she could not walk? The evidence is pretty clear that she did not walk,” said Randi.

The preacher on Aug. 27 may have displayed enough charisma to convince Roman-Knox that she did indeed possess the ability to walk, or she may have been walking on her own before, away from the public eye, building strength in her legs.

“It’s hard to say without a real medical analysis,” he said.

The outside skepticism didn’t prevent friends and family of Roman-Knox, who is known in evangelical Christian circles for her beautiful singing voice, from reveling in her apparent recovery.

“We’re celebrating today a God that continuosly does miracles. She is just an instrument in his hands,” said the Rev. Alberto Lanzot, pastor of Hispanic United Methodist Church and one of several area preachers on hand for Roman-Knox’s arrival. “We’re celebrating a God that has not forgotten Delia, that has not forgotten us, that has not forgotten Buffalo.”

Watch the videos below!

Actual 13 minute long video of the revival:

What do you think?

A Unicycle and a Firetruck Fund a Wheelchair Van

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You might see something unusual on the side of the road on Saturday if you live around Atlanta, GA.  Bill Mueller will be riding a unicycle 100 miles in efforts to raise money to buy a new wheelchair van for his brother, Gary Mueller, a retired firefighter for over 20 years who was paralyzed from the chest down in March 2009 when he fell off the two-story back deck of his home.  AMS Vans has contributed a $5,000 discount towards the price of the wheelchair van as our pledge to help Gary and his brother in their fundraising.

On Thursday, firefighters traveled from Cape Coral, Florida to Atlanta, GA in a classic 30 year old restored American LaFrance fire truck to raise awareness of the website supporting the cause: www.RideForGary.com

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“There’s so much attention that I get when I’m riding it,” he said. “I thought this would be a great way to raise money.”

Bill was right.  The website has so far generated $3,000 by allowing people to sponsor the unicycle ride by the mile, and the Cape Coral firefighters raised $3,000 on their own towards the effort.  A car wash was thrown by supporters that raised $600, and a man donated a new scooter that will be sold online to raise more funds.  T-shirts will also be available at the event for $20 to bring in extra funding.

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“This is a guy that has been a friend to us for over 20 years, and we’re just looking to help him out and take care of him,” said Lt. Ken Retzer of the Cape Coral Fire Department. “He’s a fellow brother of the fire department.”

The Cape Coral firefighter group will also be following behind Gary in their restored firetruck as he rides his unicycle on Saturday from fire station to fire station to generate more interest for the event along the route.  They are heading out at 7 am from a firestation in Gainesville, GA and will be making stops at fire stations through Hall, Gwinett, DeKalb, and Fulton counties.

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“The intent is to buy the van, but the motivation is to help Gary regain his independence,” Retzer said. “This is just a shot in the arm to turn the page in his life. We have no plans on quitting before this goal is met.”

Since leaving the hospital, Gary Mueller’s wife, Mary Ann, has been taking care of him along with his brother. Gary is unable to remember what he was doing prior to his fall, but his family believes he may have been filling bird feeders.

“It was pretty serious,” Bill Mueller said of the accident.

He added that the fund-raiser has changed his brother’s disposition.

“It almost completely turned around his attitude,” Bill Mueller said. “His spirits are great.”

A pre-event party will be held at 8 p.m., Friday, at Engine 11, a restaurant and bar in Atlanta that once was a working firehouse. Following Bill Mueller’s ride Saturday, an after-event party will be held at Engine 11 beginning at 9 p.m.

For more information or to donate, visit the website: www.RideForGary.com. Donations can be made using a PayPal account and debit or credit cards.

Toyota Robot in Development for Stroke Patients

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Toyota Motor Corporation is changing the way it is known around the world from being a champion of motor vehicles to including robotics as part of its core business.  Toyota mention back in December of 2007 that they would focus on developing “assistance robots” with availability as soon as 2010.  Since then they have been looking for ways to improve the lives of paralyzed people.  This new robot, yet unnamed publicly yet probably based on the Toyota “Robina” robot, will help stroke victims.  It is being created with the help of the Fujita Health University to aid stroke patients with paralysis on half of their body in day-to-day activities, including helping the individual to walk again.

People with one-sided paralysis often walk unevenly due to keeping their leg locked due to the fear of tumbling if they should flex their knees.  This Toyota robot moves alongside the person, senses their leg movement, and supports their knee with a motor.  This can prevent patients from galling while flexing their knee.  It can also be highly customized for the specific support each person needs such as placing their hand on its shoulder instead of using the robot as a knee support.  The robot can stand behind the person to allow them to rest as well.

Not much has been released about this new Toyota robot so far as they are keeping a tight lid on information, but we believe that it is based on their Robina Robot. This particular robot was created for human interaction and is already used as a tour guide in some museums and the Toyota plant itself.  According to company officials, other current goals with this new robot is that it is smaller and weighs less than previous robots before it.

Toyota has been creating robots for many years now including some robots you see in the videos below:

Robina

Robot Quartet Band:

US Airways Deems Passenger in Wheelchair ‘Too Disabled to Fly’

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Johnnie Tuitel inspires people for a living. The 47-year-old family man with cerebral palsy has made quite a living as a motivational speaker, comedian and author by flying from one city to another, giving lectures and inspiring people with his own philosophy that he calls “handicapitalism,” and he does it all on his own accord. On September 23, 2010, Tuitel was flying from Palm Beach International Airport to speak at Self Advocates Becoming Empowered (SABE), a national self-advocacy organization supported by the University of Missouri Kansas City Institute for Human Development, when an airline attendant for US Airways deemed Tuitel “too disabled to fly.”

After assisting Tuitel from his power wheelchair (left at the gate to be loaded into the baggage compartment as standard procedure), seating him into the flight’s narrower aisle wheelchair, pushing him onto the plane and parking his chair near the bulkhead, the same flight attendant returned and asked to “have a word” with him. Thinking there was something wrong with his wife or one of his three children, Tuitel complied as the flight attendant deplaned him.

It was then that Tuitel was informed in front of the other passengers that he would not be capable of helping himself or others should there be an emergency, that he was “too disabled to fly without someone else with him” and that he would need to have a flying companion to assist him (at his expense). In other words, there was no way they were allowing him to fly that day.

The US Airways “Mobility Disability” page states:

For safety-related reasons, if a passenger has a mobility impairment so severe that the person is unable to physically assist in his or her own evacuation of the aircraft, US Airways requires that the passenger travel with a safety assistant to assist the passenger to exit the aircraft in case of an emergency evacuation. The safety assistant must purchase his or her own ticket.

Although their rules seem straight-forward, they leave too much room for interpretation and may be leaving it up to the flight attendants to make a judgment call that they may not be capable of making.

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I know my needs,” Tuitel said in an interview with ABC News. “Nobody asked me what my abilities were, nobody asked me what my needs were, they basically made the decision on my behalf without consulting me.”

To Tuitel, handicapitalism represents his abilities, rather than his disabilities. He functions from the perspective that he has money to spend, he can participate in our economic system, and that is able to give back to the community that he loves. It is his ability to travel freely all around the country to make his living that removes so many of the barriers and challenges that life has handed him.

Without so much as asking any questions, the US Airlines representative judged Tuitel as being incapable of helping himself, despite flying thousands of times unaided before that flight and logging approximately 500,000 air miles. The result of this error in judgment was that he missed his speaking engagement and several seminars in the 2 days that it took to book another flight on another airline.

Despite his lost work, Tuitel is not angry. Instead, he is staying true to his own convictions of not being a victim. Although he does feel that his civil rights were violated, he is refusing to file suit against the airline. US Airways offered to reimburse him for the flight about three weeks later, but he declined. Since then, the airline has also asked him if he would consider being used as a “sounding board” to assist them in making their company more disability-friendly, and he says he is considering their offer.

I’m very happy that in the end US Airways is being proactive and wants to work on the situation with me,” Tuitel said. “It makes you feel good about the fact that people can make a mistake and are willing to try and rectify it.”

It’s clear that the motivational speaker has thought things through to find what is best for everyone involved while still bringing this incident to light. In the process, he will hopefully not only inspire others in similar situations, but will also inspire corporations to sit up and take notice of their accessibility policies.

Recent Findings in Duchenne Muscular Dystrophy (DMD) Research

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Sometimes an extraordinary idea comes out of a failed idea. For instance, clinical trials do not always yield the results that researchers were expecting. If the researchers are lucky, however, those puzzling results could shed insight into new investigative directions.

One such case involved a recent phase one trial designed to replace the genetic defect causing Duchenne muscular dystrophy (DMD). Researchers at Columbus Children’s Hospital in Ohio, using a therapy based on a design by scientists at the University of North Carolina (UNC) at Chapel Hill School of Medicine, demonstrated how early clinical trials of gene therapies can yield new insights into the causes of genetic disorders.

Duchenne muscular dystrophy is the most prevalent form of muscular dystrophy, affecting 1 in 3,500 males. Although females are the genetic carriers of this disease, DMD mostly affects males and occurs when a gene on the X chromosome fails to make the essential muscle protein dystrophin. Muscle weakness begins in early childhood, sometimes in infancy, and is readily identifiable by age five.

By age ten, the person may need braces for walking. By age twelve, most patients are confined to a wheelchair. As the muscles continue to break down, death usually occurs from respiratory or cardiac muscle failure by the early-to-mid twenties, with a few rare individuals surviving to age forty. Currently, there is no cure for DMD. The best medical therapy can offer is controlling symptoms to maximize quality of life and slow the disease’s progression.

Although still in its infancy, gene therapy is the promising new direction of Duchenne muscular dystrophy research. The method of carrying corrective genetic material into a subject’s cells involves fitting that genetic material into a virus to which all people have been commonly exposed. In the case of the Duchenne gene, it is far too large to fit inside any virus and so it was necessary for geneticists to engineer a “minigene” version of the dystrophin gene.

After years in development, the first trial of this form of gene therapy began in 2006 when six boys with Duchenne muscular dystrophy were given the virus containing the dystrophin minigene through injection directly into the bicep muscle of one arm, while a placebo was injected into the bicep of the other arm.

The goal of the trial was to assess the efficacy and safety of this new form of genetic therapy. Unfortunately for the study itself, researchers found that the immune response to the gene varied too much from one patient to the next for any certain conclusions to be drawn about its efficacy. Theories abound as to why this was so, but the leading idea is that this erratic response was partly due to each subject harboring different amounts of “revertant” dystrophin muscle fibers that have somehow managed to avoid the mutation.

More studies will be needed to prove whether this is indeed correct, but the results do suggest that some patients could benefit from immunosuppression prior to receiving the gene therapy.

“These findings are going to be studied intensely going forward, and should help us to understand how to better tailor our treatment approaches to suit the patients’ needs,” said study author R. Jude Samulski, professor of pharmacology and director of the Gene Therapy Center at UNC. “The Duchenne community is always looking for, ‘What does this mean for my kid?’ That take-home message should be very loud and clear: we have a better understanding of the disease.”

Samulski went on to say that the same sort of immuno-reactivity seen in these DMD boys could also exist in other genetic disorders such as cystic fibrosis or hemophilia, which also involve loss-of-function mutations. The takeaway for the researchers is that closely monitoring the immune-response profiles of patients could help to enhance the success of all other therapies aimed at restoring dystrophin activity. Results were posted in the New England Journal of Medicine earlier this month.

In related news regarding unforeseen treatments and DMD, researchers at the University of Washington and the University of North Carolina found that a drug currently being used for other purposes could improve how the heart muscle works.

The Pfizer drug known generically as sildenafil is in a class of drugs called PDE5 inhibitors that work in a variety of ways to increase blood flow. It is widely known to help fight erectile dysfunction under its brand name Viagra, but what many people do not realize is that Pfizer originally developed sildenafil to treat ailing heart patients. Many years before the Viagra revolution, the drug was being used to treat pulmonary hypertension under the brand name Revatio.

This week, Reuters reported that lab studies on mice genetically engineered to have a condition similar to Duchenne muscular dystrophy have confirmed that sildenafil could be used to treat the heart symptoms of DMD, after finding that sildenafil slowed heart damage in the mice and in some cases reversed it entirely.

“Although PDE5 inhibitors will certainly not cure DMD, the current studies suggest that they could be used in combination with current or future therapies,” the researchers reported.

As we get more news regarding any more human trials involving Duchenne gene therapy or new sildenafil trials for those with DMD, we will report those here.

New Photonic Technology to Allow Brain to Control Prosthetics

Image Courtesy of Dallas Observer

Image Courtesy of TriStar Pictures

The idea of cybernetic implants certainly isn’t anything new .  We’ve seen these highly advanced prosthetic limbs time and time again in one science fiction movie or another.  For years authors and amputees alike have dreamed of a world where missing limbs can be replaced by a fully functional artificial appendage.  Thanks to researchers at the Southern Methodist University in Dallas, that day may be coming fairly soon.

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The concept of using prosthetics in place of missing limbs is far from a new idea.  In fact, neither is the seemingly out-of-the box idea of creating a prosthetic that can be controlled by the owners brain.  The problem comes in with the neural interfaces such technology would utilize.  Up until now the interfaces of today are electronic based and composed of metallic components.  By default the human body rejects metal attachments to nerves.  However, a team of researchers at the Southern Methodist University is in the early process of developing an innovative solution to the problem.

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Using fiber optics and polymers rather than metals, Marc Christensen and his fellow SMU researchers believe their approach is less likely to be rejected by the body or to trigger an immune system response.  Also, since they are not using metals, their sensors are less likely to corrode.

The sensors themselves will be based on a spherical shell of polymer (tough natural occurring plastics; think horns or tortoise shells) that will change shape within an electric field.  The shell will be laced with an optical fibre which will send a beam of light traveling around inside.  This process, known as a whispering gallery mode, will effectively make the nerve part of a photonic circuit.

Many are highly optimistic about the potential of the project.  However, others are a little more skeptical and believe the polymer sensors may still encounter bodily rejection.  Nevertheless, the research team has piqued the curiosity of DARPA (Defense Advanced Research Projects Agency), who is providing $5.6 million worth of funding for the project.

Currently, the sensors are still in their early stages of development and need to be reduced in size before any applicable use can be made of them. In the next year or two the researchers have high hopes of utilizing their technology on a cat or dog.