by Lyn Lomasi, Write W.A.V.E. Media Staff

Fern Cohen is a freelancer who makes multiple efforts to help others facing debilitating symptoms, such as the ones she faces with ALS (amyotrophic lateral sclerosis). She is also working on writing a book and she does this, not letting her ALS, or Lou Gehrig's disease, diagnosis interfere.

"Up to age 12, I lived with my family in a NYC housing project in Brooklyn. Then, my parents followed the 'American Dream,' bought a home, and moved us out to Long Beach, Long Island," she said. She went on to earn her bachelor's degree in both French and Spanish and became certified to teach both.

Fulfilling the job of a teacher would come later. First, she would pursue a life-long dream to be a "woman of the world." "I wanted to travel, and I had heard that if you worked for an airline, you could get free or discount travel," Fern said. In 1977, she began what would become an 11-year career in the airline industry. Fern enjoyed the many positions of this career, which took her all over the world. Eventually, she would end up earning a master's in travel and tourism.

"In 1997, I decided to return to my roots and give back to society," she said. This is when she made use of her teaching degree, teaching at a public high school in East Harlem, N.Y. She taught French as well as Spanish here, until 2004, when she left fully tenured. During this same time, she also studied collage and mixed media art in NYC. She was thoroughly enjoying managing and living her life.

At the beginning of 2003, she felt the first symptoms. Experiencing extreme fatigue after normal activities, like bicycle riding and exercising, came first. Next came a loss of balance, causing her to trip and fall regularly. As a foreign language teacher, the symptom of slurred speech was one of the hardest. Then came the breathing difficulties, which were shrugged off as a symptom of her asthma and allergies. It was January of 2004, after going through numerous doctors and a long period of tests, that Fern got the devastating diagnosis of ALS. The symptoms she had been living with finally had a name.

Cohen continued to teach for the remainder of the school year. However, when she put in a request to teach at a school without steps, due to the fact that steps were nearly impossible for her to endure, the request was not fulfilled. She was told by the Department of Education that her needs could not be accommodated. It was then that she was forced to resign and collect disability.

Not being used to staying at home, Fern had a hard time managing this new life. ALS did not change who she was on the inside. She still had the intellect that would have allowed her to continue teaching. However, it wasn't seen that way by others. In Fern's words, "I find that they see the wheelchair and don't see that there is a person sitting there."


For Fern, isolation is the most devastating of ALS symptoms. Many of her friends have disappeared since her diagnosis with ALS and she says that even family members can be uncomfortable in her presence. However, the friendships she lacks in that area are greatly outnumbered by the ones she has acquired through the Internet. Most of the positive impact she has had on others has come from her outreach efforts in meeting people on social sites for those with disabilities, as well as through her blog.

While having ALS has forced Fern to use a communication device for speaking and to make use of aides for various tasks, it has not stopped her from looking at positive aspects of life. On this she said, "ALS has forced me to slow down, mentally and physically and see things I never stopped to look at before... Always fiercely self-sufficient and independent, I have had to learn to ask for and accept help. And with all the medications I take, there is no room for carelessness. If I could communicate with every ALS patient, I would say: Don't wait to die; live in a way that allows you to realize a dream. And don't dwell on what you can't do, but rather make the best of what you can still do."

She definitely lives up to that statement every second of every day.

*I originally published this on the former Disaboom via the former Yahoo Contributor Network.

by Alicia Bodine, Contributing Writer

Hunter Syndrome is genetic and hereditary. It is also called Mucopolysaccharidosis II. Hunter Syndrome patients suffer from a disease that keeps the body from breaking down and ultimately eliminating waste from cells. Health problems always result when the cells build up too much waste without having it be removed. Hunter Syndrome is quite rare with only 2,000 people having it worldwide.

Hunter Syndrome almost always affects boys because it is linked to the X chromosome. Boys only have one X chromosome where girls have two. When a girls has one X chromosome that is functioning properly it can overtake the one that is not. Those girls would still be a carrier even if they had no symptoms of their own. They could easily pass it on to their children without even knowing it.

What are the Symptoms of Hunter Syndrome: All Hunter Syndrome patients have the following symptoms: Coarse facial features (which includes a prominent forehead, nose with a flattened bridge, and an enlarged tongue), macrocephaly, stiffening of the joints, increased hair, hearing loss (mild or severe), enlargement of internal organs such as liver and spleen, abnormal retina, and carpal tunnel syndrome. In mild cases of Hunter Syndrome you may find little or no mental retardation. In severe cases, however, mental retardation can be quite severe.

Hunter Syndrome patients can live anywhere from 20-60 years if they have a mild case. Severe cases have a life expectancy of 10-20 years. There is currently no cure, however, scientist have begun trying an enzyme replacement therapy. It is still in the experimental stage so no results have been published. Some patients have undergone bone marrow transplants, but the results greatly varied.

If you know someone who has Hunter Syndrome you may want to direct him or her to hunterpatients.com. There they will find helpful resources, support groups, and healthcare resources. They can even locate other Hunter Syndrome Patients around the world. There is also a newsletter you can sign up for that will keep you informed of any new updates.

Anyone with Hunter Syndrome is eligible to contact Onepath and speak to a case manager who is capable of addresses any of your concerns. You can call OnePath at 1-866-888-0660. Case managers are available Monday through Friday, 8:30 a.m. to 8:00 p.m. Eastern Time.

Note: This article was previously published on the Yahoo Contributor Network.

by Dennis Townsend, Contributing Writer

The world of bionics has become the most beneficial scientific discovery in this century and because of that, there are a lot of people who now can live independently despite their disability. It’s a shame that most of the development for this kind of technology was created to address maimed soldiers from the battlefields. But as with all our ideas, they never seem to be important until a tragedy brings a need and with the onset of biotechnology, at least we can try and repair the damage with as much technical no how as we did to invent the weapons that done the damage in the first place.

The first FDA approved robotic exoskeleton was given the okay for home use back in June of 2014 and in that same month, we all got to see a paraplegic man make the World Cup’s opening kick using a mind controlled exoskeleton. Thanks to advances in biotechnology, replacing a severed limb or overcoming paralysis is becoming commonplace in the world. The IMES System which was developed by the Illinois Institute of Technology utilizes sensors placed inside muscles. A brain chip, a neurobridge, bypasses damaged nerves to stimulate the muscles of a paralyzed arm, hand or fingers. Lifehand 2, a joint collaboration by EPEL of Switzerland and SSSA of Italy is a robotic hand that can give the user the ability of touch and can determine if a object is soft, hard, round or square. ReWalk Robotics have moved forward in leaps and bounds with their motorized exoskeleton that assist with movements at the hips, knees, and ankles. Now those that were totally paralyzed can actually start to walk again. And with the latest technical wonder, 3-D printing, any and all things are possible.

While advances it technology is a great achievement, I believe the next task is to make it so that "everybody" has the chance to utilize the new science of robotics. No one should have to sit and watch a loved one suffer through paralysis of any kind just because the cost is too far out of reach. Politicians like to talk about helping the American people but mostly they talk loud and say nothing. When most new technologies come to light, they have been worked on and refined over years and come with a hefty price tag for research and development. But truth be told that a lot of funding for these projects come from taxpayers. Taxpayers who are placed on the back burners and are told that they can’t afford that 3-D plastic hand that could help a child grip his or her  toy for the first time. We have billions to spend on weapons of war but when it comes to helping the poor and helpless, Republicans and some turn-coat Democrats like to talk about "broke America." While affordable healthcare is here for everyone, let’s go one step further and make new scientific achievements available to everyone also by making it affordable. A poor child's dream of gripping a baseball or a spoon or being able to hug his mother for the first time is just as precious as the well to do child's dream. Money should never be a barrier in making dreams come true.

Sometimes people with disabilities need particular shoes to help them participate in sports or even everyday activities. Nike is making this easier for some people with the Zoom Soldier 8 FLYEASE shoes. LeBron James feels strongly about this and will release  his version (LeBron Soldier 8 FLYEASE) on July16, 2015.

Inspired by Matthew Walzer (a teenager with cerebral palsy), the FLYEASE design features a wrap-around zipper that is easy to take on and off. Some people with disabilities have limited mobility for tying laces and/or putting shoes on and removing them. This easy on and off design can help more people feel confident and able to complete this task.

Walzer was previously unable to put on and secure his own shoes without the help of his parents. He now can proudly wear the Zoom Soldier 8 FLYEASE shoes around campus without worrying about that issue. He is now a sophomore at Floroda Gulf Coast University.

The design was first developed in 2012, but has been improved upon over the years by determined designer Tobie Hatfield. Every athlete deserves to have access to appropriate shoes and FLYEASE will help provide just that.

Says Hatfield, "In talking to Matthew and many other athletes with disabilities, the ease of entry was just as important as the lacing solution. While varying levels of mobility make it difficult to provide a universal solution, we feel this is a significant development for anyone who has ever struggled with independently securing their foot within Nike shoes."

Matthew Walzer was able to met his basketball hero, LeBron James, who also thinks of Walzer as a hero. Says LeBron: "Matthew inspired us at Nike to be able to bring something special that will not only be for himself but also for the masses. The shoe and the inspiration he gave us is going to go way beyond Nike, Matthew and myself. I am very honored and blessed that my shoe is part of the whole process. This is an unbelievable story, and Nike has done a great job of being able to create something that’s so incredible and will last a lifetime."

Current Zoom Soldier 8 and LeBron Soldier 8 FLYEASE designs are related to basketball. However, plans and designs for future styles are already underway for Hatfield and his team.

by Lyn Lomasi, Write W.A.V.E. Media Staff

More and more companies are noticing the need for accessible and universal design in a wide variety of products and projects. Consumers can now find options for accessible homes and even accessible tree houses. One organization making a difference in the arena of universal living is the Center for Inclusive Design and Environmental Access (IDeA). Located in Buffalo, New York, this company is involved in some innovative ideas and projects.

What is IDeA?

IDeA is an organization dedicated to design improvements on products and environments. The goal with these ideas is to create a universal design that is accessible to everyone, including those with disabilities.

What is the Purpose of IDeA?

IDeA strives to create new and innovative ideas on accessible design through universal accessibility options. These ideas can be implemented in accessible products and structural designs for the home, as well as the entire living environment and even entire cities. IDeA also seeks to inform as many individuals as possible about these ideas in the hopes of creating a more accessible environment for all.

How Does IDeA Help People With Disabilities?

The goals and solutions developed by IDEA can help those with disabilities by promoting designs that are accessible to everyone. Universal accessibility is very important to those with certain disabilities. A universal design in a structure or project creates an accessible design for those who have limited access to similar products and structures, making these projects easier to use for those with disabilities.

What are Some of the Projects and Products IDeA is Involved in?

Home Modification is one program IDeA has developed. In this program, consultation services are offered to families, social service agencies and other nonprofit organizations. Through the Home Modification program, there is an extensive amount of information available on accessible solutions through universal design.

Universal Design Education Online is a Web site available to teachers and students interested in learning more about accessible living through universal design. The Web site can be found at udeducation.org. Another program developed by IDeA is called Universal Design Identity Project. Through this program, IDeA seeks to learn more about the general public's perception of accessible and universal design.

Universal Cities is a program that makes resources easily accessible to builders, public officials, the general public and designers. This is done in an effort to eventually design entire cities around universal design. IDeA has developed plans to make New York City a universally accessible city.

The Passport Kitchen Cabinet Line, made by KraftMaid, is an example of an accessible kitchen product with a universal design. This line features a raised dishwasher for extra toe or wheel space underneath, lower cabinets , lowered upper cabinets and much more. The universal design is easy to access from a wheelchair.

The Soft Bathtub is an accessible bathtub with a universal design that is comfortable for anyone to use. Its soft covering helps provide fall protection, and the non-slip design helps prevent slipping. The Soft Bathtub has even been featured on ABC's Extreme Makeover Home Edition. These are just some of the many projects, products and programs associated with IDeA and its dedication to accessibility through universal design.


*I originally published this via Yahoo Contributor Network

 by Dennis Townsend, Contributing Writer

You mostly see them during the Para Olympics competing for those same valuable medals that the fully able bodied athletes strive for and we are amazed that they can do the things they do in wheelchairs, and with artificial limbs of all types, but the one place we need to see more of them is in college competition.

Last year, the federal government here in the United States reminded all school districts that disabled students should have a level playing field when it comes to school sports. This is the opportunity for the country to live up to its ideals of equality for all. Federal guidelines call on all schools to make the needed modifications so that those students, no matter what the handicap,  has a chance to compete in any sport he or she chooses. School sports programs build character along with providing physical fitness, and promotes leadership qualities and allows the culture of long time friendships which contributes to a persons well being.

You know, until just recently, the handicapped student was denied the opportunity to participate in a school's athletic organization. They were denied this chance until 1973 when the federal Rehabilitation Act was passed, and even then, it proved to be more theoretical than real when it came to sports. Many schools saw making modifications for these students to compete in athletics was to costly, and would diminish their athletic programs. While making his statements last year, U.S. Education Secretary Arne Duncan said ,”While it is a coach’s job to pick the best team, students with disabilities must be judged based on their individual abilities, and not excluded because of generalizations, assumptions, prejudices, or stereotypes. Knowledgeable adults create the possibilities of participation among children and youth, both with or without disabilities.”

There are many inspirational stories of students who overcame physical disabilities to win accolades in football, wrestling, track, and other sports. And by providing equal opportunities for the disabled athletes we are sure to hear many more such stories. The stories will not only inspire the newly handicapped person who suffers low self esteem, but could be an insperational blueprint for many of us who are able bodied who think about quitting when life throws us a curve ball.

 by Dennis Townsend, Contributing Writer

     When we send our troops off to war, we expect a lot of casualties, and even though we hate the violence and the thoughts of losing a loved one, it is the nature of the beast. And the soldiers that are not killed, are often faced with the reality of coming home mentally or phisically disabled. That is very traumatic change of life situation for the soldier for sure, and when they get back, someone is going to have to cater to his or her every need. Depending on the severity of the disability, they may require constant care, and someone to not only keep their spirits up, but to also help them to do task that we ourselves take for granted each and every day.

     That person has been given the official name, “caregiver”, and nine times out of ten, it’s a spouse who, when they  took their wedding vow “in sickness and in health”, had no clue that they would be taking on an unforseen burden of an unimaginable magnitude.  The caregiver must not only keep the person that they love so dear encouraged, but must also do the same for themselves. Sometimes it requires long hours of trying to run the household, and then making sure their “hero” has everything they need including medicines, getting them to physical therapy, and taking care of the children if they have any. The strain on someone doing all these things is enough to bring the strongest person to their knees, but these caregivers "soldier" on, and often spend many a night awash in tears that have waited all day to fall.

     With about 28% having no healthcare for themselves, and another 40% suffering from severe depression, the possibility of a nervous breakdown looms like goliath waiting to pounce on the caregiver. And they know that if they give up for a minute, the possibility of complete failure would become all to real. There are very few organizations that offer solace to the caregiver, and the Disable American Veterans Association can only do so much with the donations that they collect, that's why they have enlisted the help of private citizens to help with this crisis. One such person is the wife of a true hero, and her name is Elizabeth Dole. For those of you who don’t know her, she is the wife of former Senator Bob Dole who himself was tragically wounded during the war with Germany, and carries the battle scars to this day. So Mrs. Dole herself understands the burdens of the caregiver, and has started an organization, The Elizabeth Dole Foundation, to provide help to those with the task of keeping the familes of the disabled veterans together and functioning.

     While we pay our utmost respects to our returning heroes, let us not for one minute forget the hero behind the disabled hero who unselfeshly let the person that meant the world to them go off and put themselves in harms way so that we could be free. If you know of any organization that is geared to help the caregivers, or if you know of someone taking care of a disabled veteran, offer what help you can, for they should be given the “Medal Of Honor” for all they do, and always remember to keep a disabled veteran in your prayers.

     

    

   

     

by Lyn Lomasi, Staff Writer

Wheelchair sports are growing more and more popular as those with disabilities realize that they can do anything anyone else can. Sometimes it may require creative thinking and some adaptive technology, but it's definitely possible. Adaptive sports can be found all over the United States. One only has to look. Accessible bowling is one of the adaptive sports that has grown in popularity and may continue.

There are accessible bowling alleys and even leagues especially for those with a disability. Some could feel more comfortable in a league that specializes in wheelchair and adaptive sports. Although a good number of traditional bowling alleys do have accessible lanes. Either way, this is an adaptive sport that can be easily enjoyed by people with disabilities.

Bowling is naturally a very accessible sport. However, some people with disabilities who require the use of a wheelchair may still enjoy an even more authentic way to enjoy adaptive sports. That's when they can use adaptive technology, such as the IKAN Bowler. The IKAN Bowler actually allows the bowler to release the bowling ball much in the same way as a person who stands to bowl, rather than one who is seated in a wheelchair.

There are many other types of equipment and accessories that are approved for, and can be used to, make bowling even more of an adaptive sport. Some of those include special ball ramps that attach to a wheelchair or walker, as well as the front of the bowling lane. There are also special ball pushers for getting the bowling ball to roll down the lane while seated in a wheelchair.

Accessible bowling exists both for adults and kids. It even exists in the Special Olympics International, or SOI. SOI allows people with varied disabilities to participate in a variety of adaptive sports. Bowling is actually an official activity of not only the SOI, but also the United States Deaf Sports Federation (USADSF), the National Disability Sports Alliance (NDSA), and the American Wheelchair Bowling Association (AWBA).

Getting involved in accessible bowling sports is as simple as finding a bowling alley or league that you want to participate in, which is not very hard at all, considering how accessible bowling truly is. Many bowling alleys are accessible, even if they do not advertise themselves that way. In addition to bowling, there are many other accessible and adaptive sports available to those with disabilities.

*I originally published this via Yahoo Contributor Network

by Lyn Lomasi, Staff Writer

Persons with disabilities who live in rural and agricultural communities now have an easily accessible location for equipment and other resources. Agrability.org was created as an easy way to locate various organizations that provide services to those living with disabilities. These organizations specialize in providing disability resources and equipment to farmers or others with disabilities who reside in agricultural and rural areas. Agrability.org is an extension of Purdue University in Indiana.

Farm workers with disabilities may require specially customized equipment and tools in order to get the job done. Because of this, there are companies and organizations who specialize in these custom tools and equipment. However, some people may not know what equipment they need or where to find that information. This is one area in which resources and information from Agrability.org can help.

One organization accessible through Agrability.org is the Warm Springs Resource Center. This organization provides educational, social and cultural resources for anyone with disabilities. People with disabilities can be linked to resources within their community or over the internet. The Warm Springs Resource Center also houses the Texas Agrability Project, which is also easily accessible through Agrability.org. Through a combination of both of these organizations, those with disabilities may access information on support groups, accessible technology and equipment and other resources.

Also accessible through Agrability.org is the Breaking New Ground Resource Center and Outreach Program (BNG). Through this organization, farmers with disabilities may access information and resources on obtaining agricultural equipment, tools, machinery and a variety of other relevant resources. The equipment, tools and machinery are all specially designed for farm workers with disabilities.

Dr.Val Farmer, Ph.D. is also cooperating in this effort. Through his website, accessible through Agrability.org, those with disabilities may access self-help and medical articles. One of his topics readers may find interesting is farm stress, among other related articles. The Research and Training Center on Rural Rehabilitation Services (RTC: Rural), with funding from the National Institute on Rehabilitation Research, strives to help those living with disabilities lead a more independent life. This is done through research, resources and training.

Through the organizations above, as well as others, Agrability.org has been helping those with disabilities gain access to important resources, such as tools, skills, technology, information and equipment. With this simple and accessible platform, farmers and others with disabilities who are living in rural and agricultural areas should be able to more readily access any resources they may need.

*I originally published a version of this via Yahoo Contributor Network

by Lyn Lomasi, Staff Writer

A person with a disability can garden just as well as one who doesn't have one - and many modern-day gardening tools are making it even simpler. Garden tools customized for ease of use are growing more popular and allowing even those who were unable to garden previously the freedom to do so with ease. From yard work to planting and caring for a garden and even creating an accessible garden, there are many gardening tools available to help make gardening more accessible to everyone.

by Lyn Lomasi, Staff Writer