Let's Blog Ability

Everyday Tools for People with MS

MS can manifest with a variety of symptoms depending on the person, but some of the long term effects include:

• Numbness
• Muscle weakness, lack of muscle control
• Vision loss
• Hearing loss
• Difficulty with walking/balance

Many products are available to help cope with these symptoms and make daily living easier for people with MS. Some of the favorite products of people with MS include:

Magnifiers:

Vision loss can come and go with MS, and for some it gets progressively worse over time. Coping with vision loss, especially when it is sporadic, can be difficult. Handheld video magnifiers are convenient: they can be carried in a pocket or purse and used for everyday reading and viewing. Desktop magnifiers are also popular but cannot be transported easily so they are better if you frequently read or view items at home.

Portable Personal Amplifiers:

Hearing loss is less common but still occurs with MS. Hearing aids are sometimes used, but because MS affects the central nervous system, hearing aids are not as effective for MS-related hearing loss as for people with hearing loss from another cause.

Mobility:

Dragon NaturallySpeaking is a voice recognition software that is popular for people with Multiple Sclerosis. For some, the loss of mobility and muscle control can be devastating in their personal and work lives. With Dragon software, the user speaks into a microphone connected to their computer, and the speech is turned into printed text.

For those with less severe mobility restrictions, the Magic Wand Keyboard is an alternative to regular typing and mousing that can be a lifesaver for people who lose some of their fine motor control with MS. With this unique keyboard, a pencil-like wand is held either by hand or in the mouth, and activates keys on contact without any strength or pressure required. It can also be used to perform normal mouse functions to click, drag, and double-click.

Top 5 Hands-Free Mouse Alternatives

When you or someone you know has just lost the ability to use a computer keyboard and mouse, it can be daunting to find an alternative that makes a computer truly accessible. Hands-Free Mice can be complicated or tedious to use, expensive, or for many other reasons a bad fit.  Here are some favorite hands-free alternatives that may be perfect for you or your loved one who is just itching to get on the computer:



1. Impulse™ Bluetooth Switch: This unique new device attaches to your skin with electrodes which send signals to the computer whenever a user makes a slight muscle movement. For example, attach the Impulse™ Bluetooth Switch to your cheek and control the mouse by flexing your jaw.

As revolutionary and exciting as this neat little device is, a price tag of over $2,000 puts it out of reach for many of us. Read on for more other options that may suit your finances better.



2. QualiEYE is another hands-free alternative that doesn't require any hardware to be attached to your body. Use the QualiEYE software with a webcam on your computer, move in front of the screen, and your cursor moves with you. Set the mouse to click based on your blinking, cheek movement, or even the movement of a finger. QualiEYE is available for $300.



3. Tracker Pro promises the ability to make fine cursor movements with slight movements of the head. Tracker Pro is especially popular in schools and other situations where one person may be using different comuters frequently; there is no software to be installed, Tracker Pro simply plugs into a USB port and is ready to go. Tracker Pro is in the middle range of available mouse alternatives at around $900.



4. Jouse 2 is a durable sip and puff switch that works well for users who have limited head movement but are able to breathe deeply. The Jouse 2 can also be accessed by a switch if a user is unable to sip or puff. The popularity of the Jouse 2 is largely due to the smooth, accurate mouse control that it provides. The Jouse 2 is available for $1,500.

Learn more about Multiple Sclerosis

The spotlight is on MS this month. We are looking at what Multiple Sclerosis actually is, what (might) cause it, and some ways of dealing with MS as an individual or as a caretaker of someone with MS.

According to the National MS Society, it is "a chronic, unpredictable neurological disease that affects the central nervous system." The body attacks the myelin that surrounds the central nervous system and even sometimes damages the nerve fibers of the central nervous system itself. This damage can lead to interruptions of the messages sent between the brain and spinal cord which can manifest as many different symptoms for different people. Some symptoms of MS include:

• Numbness
• Bladder or Bowel Dysfunction
• Distorted vision and blindess
• Fatigue
• Depression
• Cognitive impairment

The symptoms of MS can vary widely based on the damage to an individual's nerve fibers of the central nervous system. MS is diagnosed in a multi-step process that includes several tests and procedures.

MS does not have a cure but several new drugs are available that slow the progression of the disease. MS usually does not shorten a person's life.

The exact cause of MS is unknown but some researchers are leaning toward the conclusion that it is a combination of genetics, environment, and/or a virus.

MS Is Not A Life Sentence: Inspiration from Michael Gerber

We recently had the opportunity to interview Michael Gerber. We've been a fan of his blog over at Disaboom Live, and we finally asked him if he'd answer some questions about MS and his unique perspectives on living with a disability. Read on about Michael's insight and inspiration:

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1. What was it like when you learned you had MS? How old were you and what else was going on in your life?
 

I was in my mid-forties and managing a large mortgage operation. I was working six or seven days a week and the business was crazy. I started to feel an extraordinary numbness, especially in my leg. I used to be a jogger and I had stopped because I was so busy at work. I called a friend to talk about the numbness and she told me to go for a walk. I walked for 17 minutes before I couldn't walk anymore. As a jogger, I had run for 20 miles at a time but it had been a year or two. I had also had some personal matters to take care of at that time with my mother and grandmother falling ill, so I delayed going to the doctor.
 
I finally did go to the doctor after I had tried to walk. I had an MRI on Friday and had the results on Monday. That weekend, my wife and I already thought that it was MS. It was actually a relief to finally get the diagnosis. As a couple, we decided to learn about MS and learn from it. We decided then to be an example to our kids and our friends.

 
2. How has your life changed since then?
 

I stopped working just before I turned 50. My wife and I have an extraordinary life together. We spend every day together. We still do a lot of the same things we used to, albeit slower.
 
Living with a disability has taught me more about gratitude than a life without incident would have. Relationships, family, it all matters more. I've been married for 30 years now, and I love Gail more today than the day I married her. There have been a lot of positive changes since my diagnosis. Of course, now I need help getting food and drinks. If I get myself a glass of water, I'm lucky if it's still a quarter full by the time I get back to the table. I've learned to ask for help. I used to travel a lot for my living and I was very independent. Now I still travel quite a bit but not by myself. I have been to Australia, Paris, a cruise on the Mexican Riviera, skydiving, and snorkeling in the Great Barrier Reef. I use a walker at home and a wheelchair when I am out and about.
 
I am still very busy. I am helping my father-in-law with a business and I stay active with the MS Society. They ask me to speak for events in Southern California. I do a "Lunch and Learn" where we go into a business with pizza and present to however many employees we can to get people to participate in an event, an MS Bike or Walk event, for example. I tell them that I have MS, and this is what my life is like, and if you want to help, here are things you can do to get involved to make a difference. We went to a high school and did the same presentation recently.
 
For the MS Society, my wife and I co-facilitate a discussion called "8 Hours to a Lifetime of Relationship Satisfaction." We lead a discussion and do whatever else the MS Society needs us to do.
 
 We have a Walk MS team of 70-80 people called the JiggyWiggits. We have raised over $130,000 for MS in four years. The name comes from one of my feel good songs, Will Smith's "Gettin' Jiggy With It." I misheard the lyrics and had been singing it incorrectly, or my way, for years. I play a game at home called "Fun with hearing loss" and heard "getting jiggy wiggits". So when we were looking for a name, we thought it would be fun to use that.
 
In so many ways, my life has changed for the better. The things I do, the ways I experience the things I do, it's all gotten so much better. We have an open house, a parade of nutty characters. We have a dog named Jiggy and our neighbor comes in and gets Jiggy to go for walks several times a week. My friend Randy brings his great dane over and cooks at our house. We have a supportive community around us everyday which I think has been key to my living well with MS.
 
One of the greatest ways to live with a disability is to not do it alone. Build a community, a family, a support system. My wife does great partly because we have friends around all the time who are willing to help. For those of us that live with a disability, an extended family or community makes it all the more doable. You've got to be a real person, you've got to offer something to other people and then build a community around that. Our house has become a safe haven for our group.
 
Don’t get me wrong. Living with MS is no bed of  roses. Although many positive things have come out of it, I would still rather not have MS and all the symptoms that come with it. But I cannot put a value on all that I have learned and gained. I wouldn’t change my life at all.
 

3. What have you learned about MS that you think other people should know? 
 

MS is not a life sentence. We all have disabilities but MS is more obvious than others. I just need more help than the next guy. I'm not disabled - I'm a fully functional person with a disability. "Disabled" is a word for engines or bombs. I'm not turned off. There is a big difference between being disabled and having a disability. I may have a disability but I'm 52 and I have a great head of hair. Men in their 50s groan whenever I say that in a group. People with disabilities are still people.
 
When I was first diagnosed, my wife and I thought "What will we teach our children?" Do you want to know one of the greatest things to come out of all of this? I asked my kids what they think of their dad being in a wheelchair and they said that they don't even see the chair, they just see their dad. I'm glad that through this they've learned to see people as people, not just their "equipment."
 
My blog theme is "Participate, Make a Difference, Live a Life that Matters." Everybody wants a life of meaning and purpose. If you want meaning and purpose, make a difference. How do you make a difference? Participate. My blog, my activities with the MS Society, our Holocaust foundation with my wife and father-in-law, the time I spend with my community, those are my ways of participating.
 
I make it difficult for people around me to complain. A psychologist friend of mine gave me the diagnosis of "chronic euphoria." She says I am way too happy for my circumstances. I wrote a letter to Michael J Fox. He has his show and his book "Always Looking Up: The Adventures of an Incurable Optimist." I wrote him a letter and said that he may have incurable optimism, but I have chronic euphoria and I think my condition is worse. I have met a lot of celebrities and I'm not impressed by people just because they are famous. I'm impressed by people like Michael J. Fox because he is famous and he uses it to make positive changes in the world.
 

4. Do you have advice for people who are just being diagnosed?
 

As far as really specific advice, I would tell people just being diagnosed to listen to your doc. Take as good of care of yourself as you can. I stopped jogging a year and a half before my diagnosis and I know that if I hadn't stopped, I would be in better shape. Taking care of your body makes it easier. Find a doc you like and can talk to. If you don't like your doctor or you can't talk to them, find someone else. Get on a treatment plan and take care of your body.
 

5. Are you a member of any support groups and do you think they are valuable? 
 

I run a support group, and I find them extremely valuable. For any disability, it's good to know you're not alone. The goal of our group is to live better with your disability. It's all positive. Some other support groups are all about complaining. I confront symptoms. I'm doing a series of meetings about mood, fatigue, and cognitive issues. Nobody wants to talk about these MS side effects but we're talking about them. We're talking about what you can do to deal with them. Let's get it out on the table and deal with it.
 

6. Has any one person, activity, or item (book, etc) been helpful for you in dealing with MS?
 

My wife really sees to it that I can do what I want, more than anyone else. We are surrounded by a lot of people who make everyday better. My kids are growing up and their friends are getting married and I always give them this advice about relationships: You have to not only feel gratitude in a relationship, but you have to be able to express it. Remind yourself what you are grateful for. This is not new, but if you have unexpressed gratitude, it is like buying a gift and not giving it. Don't let them feel taken for granted - make sure being taken for granted never happens. My wife and I tell each other every day how grateful we are. We have a better relationship today than we did thirty years ago.
 
I have - not chronic - but recurring pain. I know it will go away but having someone to share life with makes it livable, doable, wantable. I wish everyone could have my life for a day - with all the friends, family, and activities that I love.
 

So if there was one person, I'd have to say Gail.

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 Michael's links:

The MS Society page for Michael's walking team

Michael's blog with "Thoughts and lessons" about living with MS

Register on this site, Skydive4free.com, raise $500 for your favorite charity and skydive for free!

The blog of Dan and Jennifer Digmann married couple who both have MS. Their blog is at the same time practical and inspiring.
 
Blog of Vickie Bridges, a single mom living with MS for the past 15 years.

Putting Their Braille Skills To The Test: Nation's Top Blind Students To Compete In Unique Academic Competition

For Immediate Release
Date: June 21, 2010
Contact: Courtney Kassel, Director of Marketing & Public Relations, (323) 906-3176

(Los Angeles) - It has been nearly 200 years since Louis Braille created a system of raised dot writing for blind people. Since then various forms of technology have come and gone, but those dots have remained a steadfast method of reading and comprehension for people with visual impairments. Last year marked the bicentennial of the birth of Louis Braille, and with it came a flood of questions as to the contemporary usefulness of the code that bears his name. The questions ranged from the mundane to the outrageous. "Isn't braille an outdated method of reading? Hasn't current technology replaced the need for blind people to read with their hands? Why would someone learn to read braille when they could just use talking devices and software?"

On the surface the questions may seem valid, but upon closer inspection, they don't hold up. If braille is the passport to literacy for a blind person, then abolishing its use would be akin to getting rid of the written language that sighted people use everyday. While the little braille dots are something of a novelty to the average person-they glance over them as they punch in their ATM passwords and ponder their appearance in public places-for thousands of blind and visually impaired children and adults who use those dots to connect themselves to the world around them, braille is their lifeline.

This underrated literacy issue is finally coming to the forefront of discussion because of a national academic competition that seeks to draw braille out of the shadows and into the public consciousness. On Saturday, June 26, 2010 not because of their blindness, but because of their ability to succeed in spite of it, the top blind students from across the United States and Canada will put their knowledge of the braille code to the test in the only national academic competition for blind students in the country-The National Braille Challenge®. This year marks the 10th anniversary of this groundbreaking event.

Sponsored by Braille Institute of America®, the competition serves to encourage blind children of all ages to fine-tune their braille skills, which are essential to their success in the sighted world. The 10th Annual National Braille Challenge will take place on Saturday, June 26, from 9:30 a.m. to 3 p.m., at Braille Institute's headquarters, located at 741 North Vermont Avenue, in Los Angeles. The participants, ages 6 to 19, will compete in challenging categories requiring them to transcribe, type and read braille using a device called a Perkins Brailler. This year's competition will feature a diverse group of high achievers from across the country. Most were born blind, others lost their sight due to cancer or viral infections, but they all share a tenacity that drives them to succeed in spite of their disability. They were chosen from among more than 800 students throughout the country during the preliminary round. "We know that employment numbers for blind people are significantly lower than those of sighted people in the same age group," said Nancy Niebrugge, director of the Braille Challenge™. "But 90 percent of blind people who are gainfully employed are braille readers, and that's very telling. It's essential that blind children learn to read braille at an early age."

Each category of The National Braille Challenge is designed to test braille skills in several areas-reading comprehension, braille spelling, chart and graph reading, proofreading and braille speed and accuracy-all of which blind students need to master in order to keep up with their sighted peers. The first- through third-place winners in each age group will receive a savings bond, ranging in value from $500 for the youngest group to $5,000 for the oldest. In addition to these prizes, Freedom Scientific corporation has donated the latest adaptive equipment for the winners-a pocket PC with a braille display called a PacMate.

"It always shocks me when I hear people say that braille is outdated," said Heather Antolak, whose 9-year-old daughter Kate is competing this year. "I can't imagine what Kate's life would be like if she didn't know how to read. Literacy is literacy, whether someone is reading with their eyes or their hands. We can't expect blind children to be less educated or literate than our sighted children. It's unimaginable."

Although the stakes are high, The National Braille Challenge™ serves to bridge the gap between a unique group of students from across the country, and draw national attention to a topic that has been lingering in the shadows for nearly 200 years.

"We cannot afford to let braille disappear. In 200 years from now, hopefully blind children and adults will still have this form of literacy to connect them to the sighted world," said Niebrugge. "That's the great thing about the Braille Challenge, it gives us the opportunity to celebrate braille literacy in a unique way. Most of the participants are the only blind students in their school. They go through their entire lives being the exception. This competition gives them the opportunity to build camaraderie among kids who have shared similar life experiences."

If you would like additional information on the National Braille Challenge™ or any of the participants, please contact Courtney Kassel, director of Marketing and Public Relations, at (323) 663-1111, Ext. 3176.

Things to Consider When Buying a Switch

Switches are small input devices that connect to a computer to perform a keyboard or mouse function. A switch can also connect to another device such as a switch-enabled toy or lamp. Switches are simple devices that operate like a button that performs some action when activated.

Because switches are such basic devices, a switch interface is usually needed to tell the computer which function it should be performing. For example, a switch interface would be programmed to tell the computer that when a user hits the switch, it should activate the Enter key on the keyboard.

There are many switches available with unique features that it can be difficult to navigate the most important specs to know before you buy a switch. Here are a few things to keep in mind when you are buying a switch:

Recording: Do you want a switch that records a message to play back whenever it is activated? Recording a message such as "Nice Job!" can be a reinforcement for a user who is unsure of whether they actually activated the switch. Other switches have extended recording time to play back when the switch is activated, like a unique phrase or detailed message. Keep in mind a switches ability to record and whether the length of the recording is appropriate for your needs.

Auditory Feedback: Even if you decide you don't need to record a spoken message for your switch, auditory feedback can be important. For most switches, the auditory feedback is in the form of a loud clicking sound so the user knows when they have activated the switch.

Switch Sensitivity: The more sensitive a switch is, the easier it is to activate the switch. For users with less mobility, a more sensitive switch makes it easier to activate. For others who have trouble with muscle control, a more sensitive switch may be activated too easily when the user doesn't intend to.

Size: Smaller switches can be placed together or in less conspicuous places, such as on a wheelchair. Larger switches can be easier to activate, but take up a larger space if multiple switches are needed. Switches with bigger surface areas can also be difficult to attach to wheelchairs.

Wireless: Although slightly more expensive, wireless switches can be a lifesaver for applications where a switch is needed across the room or to be passed among multiple users.

We've only addressed the basic button-type switches. There are also sip-puff switches, foot switches, and others for different needs.

What is an IEP? Learning About IEPs (Individualized Education Programs)

If you are a special education teacher, you will already be familiar with IEPs or Individualized Education Programs. If you are the parent of a child with a disability who is just starting school or being "mainstreamed," you may be curious as to what an IEP is and how it will work for your child.

An IEP includes an evaluation of the child's disability, goals for the child for that year, and any services or accommodations that may be needed for the child.

The process begins with a meeting involving anyone involved in the child's education including parents, teachers, and administrators. This meeting will be to discuss your child's needs and decide on any placement testing that may be needed. At subsequent annual IEPs you will evaluate the effectiveness of the previous years' programs and decide on goals for the next year.

You may encounter some difficulties as you navigate the IEP process. It is important to remember that the law is on your side and that the government recognizes your child's right to an appropriate, individualized education tailored to their needs.

For more information, see these resources:

For teachers and administrators: National Association of Special Education Teachers

IEP info for parents: National Center for Learning Disabilities

Getting Down to Business with AAC Devices

One way that teachers have found is very helpful for using an AAC Device or picture communicator is to customize different pages and levels for different environments that the user will encounter.

You could make a level and page for different areas like the bathroom, classroom, playground, kitchen, and bedroom. Then point out the different objects as you encounter them throughout the day. Later, ask questions about what you've seen and have the students use their AACs to identify the objects you are referring to. The questions and the items you include on each level can increase in complexity as the student becomes more comfortable with the environments.

One example would be to take the students on a walk once a day. During the walk, point out different things you see like a swingset, trees, clouds, etc. When you get back to the classroom, have the different items ready on an AAC device so you can ask about what they saw. This will engage the children in the different objects and help them correlate the different items on their communicators with the objects in real life.

Fathers of AT: Louis Braille

This Father's Day, we're celebrating Louis Braille, a Father of Assistive Technology!

Because of Louis Braille, there is a standard reading system for those who are visually impaired. The system he created has not only made lives better by opening up the joys of literacy, but it has also helped to dispell hurtful myths. This is why EnableMart has chosen to highlight Louis Braille for Father's Day this year.

Evelyn J. Rex explains in her book, Foundations of Braille Literacy, that prior to the 18th century, visually imparied individuals were not considered capable of being educated. Denis Diderot and Valentin Haüy played important roles in changing these perceptions. Diderot published the results of his interviews with people who were blind and detailed how a blind woman was taught to read and write. Years later, Haüy experimented with education a young, blind beggar, which led to the first of many schools for blind children (16).

Learning to read at these schools proved difficult. Haüy's efforts resulted in the creation of books with raised letters and other styles of embossed books. However, these books were not only hard to read by touch, but they weighed around 9 pounds. Imagine trying to read or carry a book that heavy! Writing techniques of the time were equally tough to master. In his book, Louis Braille: A Touch of Genius, C. Michael Mellor explains that "riting techniques of the time were equally tough to master. To learn to write, a blind child at the school would hold a stylus – a metal rod with a rounded tip – and trace the shapes of letters engraved into a metal sheet. Once the student had learned to recognize and remember the sensations produced in the muscles, he or she was ready to try to replicate the letter shapes on a separate piece of paper with a pencil. Writing with ink was not feasible at all; the finger that detected the motion of her tip of the pen ended up smearing the ink. Furthermore, the writer could not be certain the ink was flowing" (53).

Although these schools for the blind helped prove that people with visual impairments are capable of being educated, they did little to help students gain employment. Mellor explains that "despite years of training and impressive public demonstrations of blind people nimbly performing various trades, the reality of employment for blind graduates was sobering. Writing anonymously for North American Review in 1833, Samuel Gridley Howe... speculated, 'How many of those who leave the institution at the expiration of their time are enabled to gain their own livelihood?' 'Not one in twenty' was his startling conclusion" (53).

What Howe didn't know was a 15 year old boy had come up with a system which would eventually pave the road to fixing many of the problems he contemplated.

In 1821, Louis Braille invented a raised-dot system for reading which is still used today. The Braille system allows the reader to recognize letters with simply running the tip of a finger over the raised dots. Before Louis Braille invented the raised dot system, blind readers would need to run their fingers over the shapes of letters, and take time to figure out which letter the shapes correspond to and remember the sequence while figuring out which letter the next shape represented.

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Works Cited

• Mellor, C Michael. Louis Braille: A Touch of Genius. Boston: National Braille Press, 2006.
• Rex, Evelyn J. Foundations of Braille Literacy. New York: American Foundation for the Blind Press, 1994.

Autism Study Reveals Varied Causes for the Disorder

A new look at the genes of about 1,000 Autistic American, European and Canadian school-aged children has revealed many previously unknown genetic mutations present in the children's DNA.

Many of the affected genes are the same that are indicated in other neuro-development disorders. But, some of the genetic mutations are specific to Autism and can vary widely even among different individuals with Autism. One of the conclusions is that there might not be one treatment that works for all individuals. Although they share the characteristics of Autism, their genetic mutations are different and may require a different treatment.

This study may also be important in finding the causes - genetic and environmental - that lead to Autism. Last year an examination of prior studies by University of California - Davis found that the increased rates of Autism in California could not be entirely explained or even largely attributed to advancements in the early diagnosis of the disorder. The researchers advocated an increased effort to find environmental causes of Autism such as the neurodevelopmental toxins pesticides, lead, mercury and brominated flame retardants. To date, most Autism research funding has been focused on genetic causes.