A Lesson In Illustrating Wheelchairs From Someone Who Uses One

http://www.themarysue.com/how-to-illustrate-wheelchairs/

by Jill Pantozzi | 12:30 pm, May 2nd

 

 

Not too long ago I asked a famous comic book artist to draw me a picture of Oracle and what I got was not at all what I expected. Barbara Gordon was depicted in a hospital wheelchair with a blanket over her legs, certainly not the Oracle I know. “How could big name-so-and-so not know how to draw someone in a wheelchair?” I said to myself but then I thought, “Probably because they aren’t in one.” That’s just one possible scenario of course, there are plenty of artists out there (like Adam Hughes above) who get it right. But if there’s a problem we all suffer from at times it’s ignorance. Yes…all of us. Some more than others of course but even the most learned of us could do with a bit of education now and then and that’s my goal today.
It’s certainly not meant as a dig, but through the years, it’s become obvious to me that a lot of people are oblivious to the every day lives of people with disabilities (PWD). And that’s why awareness and education are important. It’s not that people don’t care (although some might not), it’s that they truly don’t know what’s appropriate in certain situations. Read on for a few examples of different types of wheelchairs, as well as those who use them, plus some commentary by a creator and an actor who are close to the topic at hand.

This is a normal, manual wheelchair, also sometimes called a transport wheelchair. Why? Because its purpose is to transport people, it’s utilitarian. They use these in hospitals to get patients who can’t, or shouldn’t be, walking from one place to the next. A person who was permanently disabled would most likely not be using this kind of wheelchair yet I often see comic artists depict characters, Oracle for instance, in this type of chair when she should be in one that looks like this.

The difference? This is an easily maneuverable, easy to transport wheelchair. And no, it doesn’t have handles because people who use them usually like (and can) get themselves where they need to go without help. So why don’t we see this type of wheelchair depicted more often, for the characters who would use them, in comics? I asked DC writer Gail Simone, who’s written the character of Oracle often.

Simone said they always strived to be accurate but that sometimes mistakes happen. “We normally took care about the design of the chair in the earlier Birds of Prey issues, but sometimes, an issue might have a fill-in artist, and in some cases, the chair designs in those issues were occasionally downright archaic,” she said. “You can’t really blame that on the artist, it’s more my fault for not providing proper reference, or if I wasn’t aware a fill-in artist was being used, then the editor should have provided reference.”

Still, the fact remains, a good number of artists don’t already have this type of information on hand and that’s one of the reasons I decided to write this piece. However, Simone told me she was always listening to fans for advice and direction.

“Most of the comments we got from PWD were very positive, but the depiction of the chair needed updating and they let me know on the net and at conventions, for which I was very grateful. It was never angry, they just wanted such an important aspect to be handled correctly, and they were dead right. Specifically, it was pointed out that Barbara, a tech wizard, would be using a lighter, more maneuverable chair,” she said. “So on the second volume of Birds of Prey, I put the question out there to both chair users and health care professionals, what kind of chair would Barbara feel most useful and appropriate. And we got a stunning amount of response, which we were incorporating directly into the book, when it was unfortunately canceled for the big relaunch.”

Here’s artist Yasmin Liang‘s depiction of Barbara Gordon as Oracle. Liang said she looked to Google for reference but wrote, “I was terrified of putting Barbara in the wrong kind of wheelchair (I’m still quite sure all I’ve done is draw something vaguely alluding to one).” Actually, she did a pretty great job considering this is how someone with a spinal cord injury, similar to Barbara, looks in their chair.

That’s Teal Sherer, Venom from The Guild, who told me she has the same frustrations as an actress when seeing wheelchair on screen. ”I was flipping TV channels the other night and came upon this awful Hallmark movie called After the Fall,” she said. “It’s about this young woman who is a competitive show jumper and falls off her horse and becomes paralyzed. They put her in this clunky, medical looking wheelchair which drove me nuts. It’s so false. In reality she’d be in a wheelchair that was similar to mine. Do your research producers!” The actress playing the starring role was not confined to a wheelchair in real life; having a consultant on set would certainly have directed them to the reality of the situation. Sherer is currently working on a comedic web series called My Gimpy Life, that will be based on her adventures as a woman in a wheelchair in Hollywood and hopefully clue a few people in on what things are really like.

Here we have a motorized, or power chair. It’s something someone who has limited mobility or muscle function would use and like other chairs, can feature any number of extra pieces to conform to the needs of the individual. It’s similar to the kind of chair theoretical physicist, cosmologist, and author Stephen Hawking utilizes.

Hawking has amyotrophic lateral sclerosis (a neurological disorder that falls under the Muscular Dystrophy Association’s purview), also known as Lou Gehrig’s disease. May is ALS Awareness Month and a great opportunity to learn more. The important thing to remember is who you’re drawing for. What limitations does the character have? What can they do? Even if a character’s condition is similar to another’s, they may require a completely different set-up for their adaptive device.

For instance, while ALS is very similar to muscular dystrophy, the diseases path may take a very different journey and require different care. I have a type of muscular dystrophy called Spinal Muscular Atrophy. It’s also a neurological disorder but affects me much differently than ALS affects Hawking. This is the kind of wheelchair I use every day.

The term for my particular wheelchair is a power scooter but my friends have been known to call it a go kart, while I affectionately call it the Batcycle. Power scooters tend to be used by the elderly than anyone else but I don’t care because it’s totally cool.
And here’s what a scooter looks like in comic form.

Stewart McKenny illustrated me into an issue of Super Friends at DC Comics and did a pretty great job with my scooter even though he and I live on separate continents.
There’s room for variation of course. People with the exact same conditions may not use the same equipment or even use the same equipment all the time. It’s whatever works best fo for the individual. I have a manual wheelchair I take with me if I’m traveling and know the scooter is going to face obstacles. It does have handle bars because I don’t have enough strength in my arms to push myself for extended periods of time.
In the short-lived Birds of Prey television series, actress Dina Meyer used a few different chairs as Barbara Gordon.

Google image search is a huge resource for reference material, I found an abundance while looking for

Like I said earlier, this isn’t a dig at artists or their methods, just an attempt at opening some eyes. It’s easy to be oblivious when something isn’t staring you in the face. Believe me, I’ve asked enough people, friends and strangers, if there was a step into a building and had them respond, “You know, I’m not sure,” to realize these issues aren’t relavent to everyone. But that doesn’t mean they should be ignored.

There’s not a lot of disabled characters in comics but it might not be that way forever and those printed on the pages now deserve to be portrayed as accurately as possible. Simone made sure to tell me she, as someone who is very aware of PWD, knows they can always do more. “Looking back at any work, I tend to focus on what we could have done better, like a lot of writers,” she said. “While I think Barbara was a brilliant example of a kickass PWD character, we definitely could have and should have presented her chair as more modern much earlier in the run.”

Although I’m disabled, I’m not the authority on the disabled of the world. I don’t claim to know all and I can only share what I personally know and see. Even I don’t get it right all of the time, so I understand how easy it is to make mistakes. The number one thing to remember is – people in wheelchairs are exactly like you, except they’re sitting. Seriously. We may have to do more to get ourselves ready and out to work in the morning but we’re just regular people living our lives. All of the wheelchairs I showed you may have similar components but they are not the same, just as people have different personalities, so do wheelchairs! (My old high school buddies will tell you stories of all the smiley face stickers I had on my old one.) Keep in mind who is using the wheelchair, do some research to find out what type they would use, and you’ll go a long way to making not just PWD proud but educating everyone else at the same time.

Taking the Pulse of Augmentative and Alternative Communication on iOS

http://www.assistiveware.com/taking-pulse-augmentative-and-alternative-communication-ios

Posted Tuesday 17 Apr 2012

Introduction

During Autism Awareness Month, an exploratory survey on Augmentative and Alternative Communication (AAC) and iPads, iPod touches and iPhones was distributed as part of research collaboration between AssistiveWare and professors from the University of San Diego and the California State University at San Marcos.

In this blog post we provide an overview of the key facts and findings of the survey that among others revealed that in the opinion of respondents, Proloquo2Go and other full-featured AAC Apps together with Apple’s iPad, iPhone and iPod touch can deliver an AAC solution that supports considerable improvements in key areas such as independence, behavior, interaction with others and learning.

About the survey

Topic of the survey: Augmentative and Alternative Communication (AAC) and iPads, iPod touches and iPhones

Why was the survey conducted?: This initial exploratory survey was conducted to identify interesting trends about the user community and the benefits of AAC on consumer devices.

Who conducted the survey: The survey is part of research collaboration between AssistiveWare and professors from the University of San Diego and the California State University at San Marcos.

How was the survey distributed: The online survey was distributed through Facebook, Twitter and newsletters targeting users, family members and professionals in the Proloquo2Go and AAC on iOS user communities.

Who responded to the survey: 232 people: 17 AAC Users, 98 family members, caregivers and friends of AAC users, and 117 professionals working with AAC users. All the respondents were people who had previously shown an interest in AAC for iOS devices.

Disclaimer: The survey is of a preliminary, exploratory nature with a relatively small sample size and a “convenience” sample. Nonetheless, a number of patterns emerge across all three groups of respondents providing confidence in emerging trends and support for larger and more in-depth research on this important topic.

"One of the most exciting results from the survey is that an overwhelming majority – as many as 60% to 80% of the AAC users and families – are seeing real-life benefits of this technology. Improvements not just in communication, but also in independence, behavior, atmosphere at home and general wellbeing are observed since using Proloquo2Go. This is a great source of inspiration.”

David Niemeijer, founder and CEO of AssistiveWare

Key findings

Impacts

• 60% to 80% of the AAC users and families reported improvements in communication with others, in independence, in behavior, in the atmosphere at home, and in general wellbeing since starting with Proloquo2Go or another full-featured AAC App.
• About 50% of the adult AAC users and over 55% of the family members and caregivers report an improvement of verbalization and speech for the AAC user.
• 40-70% of respondents report use of an iOS AAC app to communicate in a variety of other settings beyond the home.

Challenges

• Less than 10% of adult AAC users and less than 25% of family members and caregivers of AAC users report receiving professional support to effectively implement AAC.
• Close to 20% of the professionals and close to 30% of the family members and caregivers consider the professional supporting the AAC user not or only slightly knowledgeable on AAC.
• Family members and caregivers report that only 20% of the AAC users in their care use AAC for the full range of communication functions, such as starting and changing a conversation.

Mobile AAC use

• One third of the AAC users reported that three years ago they used a high-tech dedicated AAC device. Today, virtually all (also) use an iOS device for AAC.
• Close to 60% of the family members and caregivers and over 65% of the adult AAC users reported that they started working with a full-featured AAC app less than 1 year ago.
• Adult AAC users and family members of AAC users report that 90% use an iPad for communication, while over 25% also uses an iPhone or iPod touch. Additionally, 15% to 20% also use a dedicated communication device.
• AAC apps on iOS devices are used across all ages. More than 55% of the professionals reporting the use of AAC apps with preschoolers and 10% working with individuals over 65 years old.
• Family members and caregivers report that over 90% of the AAC users they care for use the device for non-AAC activities, with the most frequent categories of use being entertainment (85%) and learning (70%).

Our survey reinforced what I've been hearing from the field - parents, teachers and Speech and Language Professionals realize that SLP's need more training in AAC. They need to know how to use these cool new devices and apps to take advantage of the potential communication improvements. Often the broad range of communication benefits is not fully realized because too many kids and clients are stuck on labeling, requesting and answering endless repetitive questions. SLP’s can help us change that. I hope the American Speech and Hearing Association will lead the way again and support their members to bring even more of their language and communication expertise into the 21st century world of communication options that give new meaning to "freedom of speech".

Anne M. Donnellan, PhD, professor University of San Diego and Director, USD Autism Institute

​Key conclusions

Impacts

• In the opinion of respondents, Proloquo2Go and other full-featured AAC Apps together with Apple’s iPad, iPhone and iPod touch can deliver an AAC solution that provides considerable improvements in key areas such as independence, behavior, interaction with others and learning.
• Despite the limited nature of our data, we are hopeful that a wider availability of AAC might enhance speech development for many individuals.
• It appears that AAC apps on iOS devices provide a flexible, mobile communication solution that is being used in many different environments.

Challenges

• It appears there may be a serious shortage of knowledgeable professionals capable of assisting families with effective AAC use.
• The preliminary data suggests the potential of many AAC users to access a fuller range of communication functions is as yet insufficiently tapped, with less than 20% using the full spectrum of communication functions.

Mobile AAC use

• It appears that Apple’s iOS devices and AAC apps have brought AAC within reach of a much larger population than was traditionally served with dedicated devices.
• Apple’s iPad, iPhone and iPod touch appear to be used as an AAC solution by a variety of age groups ranging from those receiving early intervention to seniors.
• Many users benefit from having access to more than one iOS device for AAC, perhaps because of the affordability of the devices and the benefits of the different form factors.
• Adoption of iOS devices for AAC use appears to be accelerating.
• The multipurpose nature of the iOS devices and available apps make the devices useful for many purposes beyond AAC.

White paper

Download the full white paper

High-tech retainers let paralyzed patients control wheelchairs and computers

From: Medical Design - 04/19/2012 - page 54
By: Stephen Mraz

The Tongue Drive System being developed at the Georgia Institute of
Technology lets incapacitated people, those with high-level spinal chord
injuries, operate a computer or maneuver an electric wheelchair, all by
moving their tongues. The device consists of upper and lower dental
"retainers" a person wears and an Apple iPod or iPhone.

Read the entire article at:
http://medicaldesign.com/Innovations-High-tech-retainer/index.html

Links:
Tongue Drive System Goes Inside the Mouth to Improve Performance and User
Comfort
http://www.sciencedaily.com/releases/2012/02/120220085656.htm
http://www.gatech.edu/newsroom/release.html?nid=110351

Maysam Ghovanloo
http://www.ece.gatech.edu/about/personnel/bio.php?id=147

Tongue-Drive System
http://www.wgntv.com/news/medicalwatch/wgntv-tongue-drive-aug9,0,1227181.story

From Seurat’s dots to ‘seeing’ inside brain

http://www.utsandiego.com/news/2012/apr/29/from-seurats-dots-to-seeing-inside-brain/?page=1#article

Philip Low, 32, orders lunch at Tapenade, in French. He explains how, when he was 10, his father, an oil and telecom executive, had an adverse reaction to a common tranquilizer of the time, packed a gun in a briefcase and threatened a banker in Switzerland, whom he suspected was cheating him. His father went to prison. Low and his mother were evicted from a seven-story grand maison purchased from the Rothschilds in the center of Paris and abruptly lost their summer residence as well, “a castle” built by Napoleon III in the south of France, to land in a studio apartment.

Months later, the FDA investigated the psychological side effects of the drug, which included “acting out” and violent mood swings, and the Swiss Parliament voted to pardon his father. This made an indelible impression on the young Low.

Low, who has a Ph.D. in computational neurobiology, is the founder and owner of NeuroVigil, an innovative La Jolla wireless diagnostics company whose principal product, the i-Brain, is being used in tests of patients’ brainwaves to tell if they have epilepsy, Alzheimer’s, brain tumors, post-traumatic stress disorder, and other neurological ailments. It also measures sleep states.

Low recently used i-Brain to image the thoughts of Stephen Hawking, the famous physicist crippled by Lou Gehrig’s disease. Hawking gave the mental order to scrunch his right hand, in hopes that the brain waves so generated could be turned into a line of communication on a computer or, much later, perhaps, a command to a robotic arm.

I-Brain works on a single channel and is almost as small as an iPod or the Tic-Tac breath mints box. Anybody — not just a patient — can fit it on their head like an electronic hat, at home, while asleep, or watching TV, and the results can be radioed to a smartphone or doctor. No need to spend an expensive night in the hospital running an EEG with electrodes plastered to one’s scalp.

Implications are major. The news that a soldier in Afghanistan has seemingly gone berserk and killed a dozen civilians is all over the news the week of our lunch. Since the alleged shooter had suffered concussions in Iraq, he could have been tested before being sent on to Afghanistan, Low explains.

A major bread-and-butter use of the i-Brain by pharma companies is to test psychiatric drugs to “see” what is going on in a patient’s brain while the compound is active at low doses in the body — a noninvasive approach.

After an animated discussion with Tapenade’s owner and chef, Jean Michel Diot, on how to redo the restaurant’s great room, Low strolls outside and down a courtyard to the startup’s light-filled offices.

“To think that it all started because of tweety birds!” laughs Low. “I just applied the algorithm to humans.”

He explains how he developed the essential algorithm from his pioneering work on the brains of zebra finches, when he was a grad student flying back and forth between La Jolla and the University of Chicago. For a break or when stumped, he would stroll over to the Art Institute of Chicago and stare at the paintings.

He was especially drawn to Georges Seurat, and by the magical mosaic of receding brush stroke dots that compose Seurat’s “A Sunday Afternoon on the Island of La Grande Jatte.”

“My ‘aha moment’? I realized, looking at Seurat’s dots one day, that neuroscientists were trying to do the wrong thing. They thought that in order to better understand the brain, you had to take the smallest details into consideration, like a Chuck Close-type painting, and all of a sudden I understood Seurat was able to give us a very powerful message because he showed that we could abstract some of these details — the statistical distribution of those dots — and provide objects that we could recognize from far away. So I thought, if instead of agonizing about each millisecond, I developed a new way of visualizing the data and I replaced chunks of time with single dots, then the statistical distribution of those dots would give me a representation of each brain state, and that’s exactly what happened.”

Low’s algorithm, presented at UC San Diego in 2007, became one of the shortest Ph.D.’s on record — one-page, including graph. The graph looks like a very abstracted Seurat painting, sans Parisians. (His thesis was titled “A New Way To Look At Sleep: Separation And Convergence.”)

Low ushers me into his own space at NeuroVigil, complete with long couch, since he often stays until 2 in the morning. Not so startup casual is a plexiglass-covered green blackboard with elaborate chalked calculations preserved underneath. This is Francis Crick’s blackboard from his office at the Salk Institute. Crick, of course, discovered the double-helix shape of DNA with James Watson (and Rosalind Franklin).

When he was 20, Low wrote Crick a letter and was invited out to La Jolla to the Salk.

NeuroVigil’s scientific board has been a rather strong one, including two local Nobel Prize winners (Roger Guillemin, president emeritus of Salk; and Sydney Brenner, former wunderkind in the Crick/Watson lab who developed the implications of messenger RNA), Fred Gage, and Andrew Viterbi, a principal co-founder of Qualcomm, as well as Stephen Wolfram, Sonia Ankoli-Israel, Ron Graham, and Hawking.

Low says that six billionaires are “on standby” to invest for his next round of funding. “Sometimes I have to pinch myself,” he says. “I’ve made it difficult for them to invest, but rewarding to invest.”

Low can be infectiously unhumble.

But there is sometimes an aware sadness in his young eyes, too.

He tells me a story of going to an important round of meetings with European pharma companies. He’s up early, jogging in the countryside near the corporate offices. Off in the distance, he sees a white, castle-like residence. It hits him. That was his own family’s summer residence, when he was 10, when his father took the wrong prescription drug, and the world first changed, for Low.

“It was an ironic and satisfying moment,” he says.

Free-enterprise zone

Low believes a free-enterprise zone should be created in La Jolla that would allow startup companies to thrive in San Diego and not be tempted to move to Silicon Valley or Boston. He has launched a petition

(neurovigil.com/petition/) and met with or contacted San Diego’s four mayoral candidates. His principal proposal is to remove payroll taxes from bona fide startups, as has been done in San Francisco to entice companies out of Silicon Valley. As for NeuroVigil, Low has solicited a letter from Mayor Jerry Sanders that reads in part, “The City of San Diego is committed to ensuring that

NeuroVigil continues on its path to great prosperity from its home base here in Southern California.”

Steve Chapple’s Intellectual Capital covers game-changing people, ideas and perspectives. He can be reached at intellectual capitalchapple@gmail.com

Lou Gehrig’s disease stills man’s voice, but not his spirit, will to live

This article mentions my friend and colleague, Lisa Bruening.  Lisa coordinates the assistive technology program for the Northern Ohio Chapter and is extremely knowledgeable about communication devices and assistive technology for people with ALS.

http://www.cleveland.com/newsflash/index.ssf/story/lou-gehrigs-disease-stills-mans-voice-but/5e010428f7de46c984121f6eed33b588

April 30, 2012, 2:13 a.m. EDT

The Blade

 

OAK HARBOR, Ohio — Tim Brooks was a boy when his father died young.
That was only the start.

Years later, the Oak Harbor resident lost two brothers within six months; one of electric shock while working, the other, like their father, in an auto accident. More recently, his mother and another brother died of Lou Gehrig’s disease, which causes progressive muscle weakness, paralysis, and ultimately death. It is more formally known as amyotrophic lateral sclerosis, or ALS.
Now Mr. Brooks is living with ALS, which in his case has hindered his speech and swallowing to the point that most nourishment comes through a feeding tube.

Still, he and his wife of nearly 34 years, Andrea, are enjoying life and are trying to help researchers find the abnormal gene causing ALS among relatives that could be present in more — including their two daughters and 2-year-old granddaughter.

“It is hard to correct something if you don’t know what caused it,” Mr. Brooks said through an iPad, a device he uses to communicate.

Such helpfulness, one Northwestern University neurologist who has studied ALS for roughly a quarter century said, is vital to advancing research to find the cause and ultimately a cure for the neurodegenerative disease. The Chicago-area university’s research team recently discovered details about the underlying disease process for all types of ALS patients, including those with familial ALS, said Dr. Teepu Siddique, a neurology professor with the university’s Feinberg School of Medicine.

“We’re very hopeful,” Dr. Siddique said. “For the first time, we’re very hopeful.”

He added: “I’m thankful, very thankful, to Tim’s family for helping us out.”

Commonly named for former New York Yankees baseball player Lou Gehrig, who died of ALS in 1941, the disease stops signals sent by motor neurons in the brain and spinal cord from reaching muscles.

As a result, weakened muscles atrophy and eventually become paralyzed, and most patients die of respiratory failure within three years or so of symptoms showing up.

ALS in Lucas County

Six to eight people per 100,000 live with ALS, according to the ALS Association northern Ohio chapter, which provides support groups, equipment, and other services to northwest Ohio residents.
That means an estimated 30 Lucas County residents are living with ALS, part of roughly 60 people in a nine-county area of northwest Ohio, according to the association.

In about 90 percent of ALS cases, the disease is sporadic and not inherited. The other roughly 10 percent of cases involve familial ALS, caused by a gene abnormality.

A number of gene mutations causing familial ALS have been identified, but the correct one has not been found in Mr. Brooks and his family.

Typically, mental abilities are not affected by ALS, although there are some familial cases linked to dementia. Mr. Brooks’ aunt, his late mother’s twin, 81-year-old Joan Nesteroff of the Chicago area, was diagnosed with ALS more than 20 years ago, and she started showing signs of dementia at about 70, said her daughter, Kathi Boothe, who cares for her mother.

Some patients describe ALS as like being buried in sand because they are unable to move their bodies. The typical case resembles the centuries-old beliefs of French philosopher Rene Descartes, who thought a person’s mind and body were separate, Dr. Siddique noted.

“This is a terrible disease,” he said. “It separates out mind from body. The mind is there, but the body’s not there.”

He added: “It’s sort of like living in a dream world.”

Northwestern researchers discovered that the protein recycling system in the neurons of the spinal cord and brain is broken in ALS patients. As a result, cells cannot repair or maintain themselves.
A lack of funding, however, is delaying work on finding an effective treatment by testing for medications that would regulate the protein pathway, Dr. Siddique said. Northwestern researchers have less than $1 million a year to work with, and they need $10 million to $15 million over the next two to three years to come up with treatment answers, he said.

“Now we’re at a point where we need an infusion of funding and resources,” Dr. Siddique said.
Donating DNA

Relatives of Mr. Brooks have donated DNA to research efforts both at Northwestern and the National Institutes of Health, which is studying ALS genetics.

Research to identify abnormal genes has opened up in just the last few years, said Dr. Erik Pioro, director of Cleveland Clinic’s Section of Amyotrophic Lateral Sclerosis and Related Disorders.
At Cleveland Clinic, research includes comparing neurological tissue from patients before and after their deaths to identify changes on MRIs, Dr. Pioro said. “It’s just really so important that families are willing to donate blood and are willing to participate in these types of research projects.”

Mr. Brooks, who is treated by Dr. Pioro, has agreed to donate his brain and spinal cord to Cleveland Clinic after his death.

His late brother, Gary Brooks of Genoa, made an anatomical donation after succumbing to ALS last year, the Brookses said.

Providing information and genetic material to researchers including Dr. Siddique and helping raise money are the family’s legacy, they said.

“We realize we have a genetic gold mine, not only for our family, but for other families who suffer from ALS,” Mrs. Brooks said.

In tracing Mr. Brooks’ family tree, it looks as if his maternal grandfather, Ben Wunderley, died of ALS at 47.

Mrs. Nesteroff, Mr. Brooks’ aunt, is the first of current generations to be diagnosed with ALS, and a cousin, Toledo native Bob Textor of Iowa, is living with the disease.

All of Mrs. Nesteroff’s siblings donated blood to Dr. Siddique’s research efforts a decade or so ago, said Mrs. Boothe, her daughter.

Whether any more relatives in that branch of the family, including Mrs. Boothe’s four children, has ALS not been determined, Mrs. Boothe said. They know ALS is a possibility, and it makes them appreciate what they have, said the grandmother, who called her mother’s longevity and positive outlook inspiring.

“Of course, we all hope we don’t have it,” Mrs. Boothe said. “I wish my mom had her health.”
She added: “We’re all going to die of something someday.”
Life with ALS

Brooks family members also are continuing to live their lives.

“Our children may have inherited this,” Mrs. Brooks said. “If this befalls them later in life, we want them to look back at us and say, ‘Mom and Dad handled this the best they could.’

Although finding a cure for ALS is the ultimate goal, the Brookses hope research advances enough in coming years so their offspring and other relatives can be tested if they want, they said. At least their daughters knew while in their 20s that ALS was a possibility, about two decades earlier than they did, they said.

In October, family members raised nearly $30,000 for the ALS Association northern Ohio chapter during a Toledo walk, and they plan to continue fund-raising efforts annually. FirstEnergy Corp., from which Mr. Brooks retired, provided half that sum by matching donations the family raised, the Brookses said.

Besides offering a monthly support group in Toledo, the chapter lends patients walkers and other equipment, helps with technology to aid communications, and assists with government advocacy, among other services, said Lisa Bruening, patient services coordinator.

For example, Ms. Bruening recommended Mr. Brooks get an iPad, the couple said.
“I will be 55 in July, and I’ve had a good time over the years,” Mr. Brooks said with the device’s help. “Fifty-five is not bad for a Brooks.”

Every patient has a different experience with ALS. Some start to show symptoms at a young age and die quickly. Others live for years.

The type of ALS Mr. Brooks has initially affected his tongue rather than his limbs, interfering with swallowing and speech.

He is able to use a walker to get around, and ALS symptoms overall have progressed slowly but steadily since he was given the diagnosis in September, 2009.

Symptoms can hit a plateau at any time, a grinning Mr. Brooks said through his iPad.

Despite his condition, the couple are able to spend time in Florida. Mr. Brooks continues to fish and do other activities, but he admits struggling with being unable to do yard work and other chores.
The latest blow for the couple is that their older daughter, Lindsey Borjas, is moving to Japan for three years because her Marine husband, Curt Borjas, is being transferred there from Chicago. Still, it’s a good opportunity for the young family, including 2-year-old Juliana Borjas, and they will use Skype and other technology to communicate, Mrs. Brooks said.

Several years ago, the young couple were stationed in Japan, and the Brookses’ younger daughter, Ashley Brooks, who lives in Florida, was able to do student teaching there. The sisters also traveled, one of many ways they have made the best of life despite the threat of ALS, Mrs. Brooks said.
“You only get one chance sometimes,” Mr. Brooks said with the help if his iPad.

Contact Julie M. McKinnon at: jmckinnon@theblade.com, or 419-724-6087.