ASSISTIVE TECHNOLOGY SOLUTIONS FOR PEOPLE WITH DEGENERATIVE

NEUROLOGICAL DISORDERS WEBINAR

~ AUGUST 10, 2010 ~



CAROLYN PHILLIPS: Thank you so much for being with

us today. We know that everybody's got busy schedules and

other things tugging at your time, and we appreciate you

spending some time with us, with Tools For Life, just

dedicating some focus on assistive technology strategies

and solutions for folks that have degenerative neurological

disorders.

We're excited that you're here. We're excited

about this topic, in particular. And we do hope this will

be a dialogue, one that will continue long past this time

of the webinar.

If you have questions, comments, what have you,

information that you would like to share with us, we

definitely want to hear it. And so feel free to e-mail us.

We'll give you our e-mail information at the end of this

presentation.

Everyone should see the first slide, which says

"Tools For Life, Georgia's Assistive Technology Act

Program" and then "Assistive Technology Strategies and

Solutions." And I'm going to just refresh just to make

sure that everybody sees that.

So hopefully everybody sees that. If somebody

could let me know that you do indeed see that, then I'll go

ahead and click on to the next slide.

And we're going to do just a brief introduction --

great. Thank you all for the feedback.

We're going to do a brief introduction, just a

slight orientation of our webinar system for those of you

who have not been on with us before. So I'm going to turn

this to Liz my wonderful partner here.

So, Liz, if you'll explain, that would be great.

LIZ PERSAUD: Thank you, Carolyn.

Hey, everyone. This is Liz Persaud with the Tools

For Life program. And I'm the training and development

coordinator, and I just wanted to give y'all a few

housekeeping tips as you're joining us today on the

webinar.

As you can see -- hopefully y'all -- and we're

getting positive messages that everyone's seeing the first

slide of the PowerPoint.

There are numerous ways that you can interact with

us during this time that we're together.

Over on the right-hand side of the screen you

should see "Public Chat." That's where everyone is writing

back to us, giving us your name and organization. And

we're seeing lots of smiley faces and lots of y'all saying

you can see the PowerPoint.

That's where comments and questions will pop up.

If you have any questions or comments throughout the time

that we're here presenting, feel free to type them in the

white box underneath the public-chat area, hit "Enter," and

it will pop up there. And that's a great way of

interacting with us.

If you have a microphone and you would like to

actually speak any time during the webinar, what you need

to do is you'll hold the microphone up to your mouth very

closely, and you will hold down the "Control" key on your

keyboard during the time that you're speaking. But you'll

need to remember to let go when you're done speaking, so

that way we can answer your question, and it allows for

other people to jump on and ask questions as well too.

If you are using a screen reader or need any

accessibility options, feel free to go up to "Options" and

click on "Accessibility," and you can configure your screen

or anything that you need to your liking.

We also want to let you know that this webinar is

being recorded.

Kimberly Griffin, thank you so much for joining us

today.

She's our wonderful transcriptionist. She is

recording the session, and it will be up on the Tools For

Life webinar archive page in about three to four weeks, and

we'll be able to have the recording on there and the

written transcript and everything like that.

So that's about it. And I'll pass it on to Carolyn

to take us off.

CAROLYN PHILLIPS: Excellent. Thank you so much.

I appreciate that, Liz.

And I'm going to move forward. I see that a few of

you are saying that you can see the slides and -- I mean a

lot of you are saying you can see the slides, and a few of

you are saying you're not able to see the slides.

If you will go up to your icons right below the

menu. And the third icon over -- it's two green arrows

that are kind of going in a circle, and that's your refresh

button. If you'll just hit the refresh button and see if

that will solve the problem. If not, we can e-mail this

presentation to you after. And as Liz said, it is going to

be archived.

Oh, good. And I see that you can see it now.

That's great.

So what we're going to do is we're going to explore

with you and define what we mean by "degenerative

neurological disease process" so that everybody knows

exactly what we're talking about.

We're going to give you some examples and just

bring you up to date on some of the diseases that we see

pretty regularly, and I'm sure that some of you have seen,

too, and kind of where we are and where research is. And

then we'll consider assistive technology and matching it

with individuals with AT.

We actually created a new format specifically for

y'all. We did this where we're breaking down and

organizing our assistive technology in different areas. So

I'm interested to hear your feedback as to whether this is

a better way to present the information.

And as Liz said, we do have credits available. And

I'm going to let Liz explain this one more time just to

make sure that everybody's on board.

LIZ PERSAUD: Yes, credits are available. If you

are interested in CEUs, what you'll need to do is visit the

AAC Institute. That's www.aacinstitute.org. And you can

go there and register for CEUs.

Now, I do want to let y'all know that they're a

little behind in updating the website. I know I've gotten

a lot of e-mails behind the scenes of folks saying that

they are having trouble getting it. So just bear with us

as we're working on getting the information up there. And

let me know in just a few weeks if you still have

difficulty.

We are approved for -- actually, this is 1.5 CRC

credits. I apologize. That's a typo there. But it's 1.5

CRC credits. And a lot of y'all contacted me ahead of

time. So if you do need the CRC verification form at the

end of the webinar, feel free to e-mail me, liz@gatfl.org,

and I'll be sure to send you that as soon as the

presentation is over.

CAROLYN PHILLIPS: All right. So the first slide

here is actually a comment that a friend of mine made.

There's a picture up here of a bunch of folks that are

sitting at a picnic table.

And actually I'm related to many of these folks.

They are folks with Huntington's disease. In a while I'm

going to explain a little bit more about Huntington's

disease. It is a degenerative neurological

disorder/disease, what have you, whatever term you want to

use.

And Earnestine -- she's in the lower right-hand

corner, and she's sitting at the table -- she's actually

one of my cousins, and she passed recently. And she's

wearing a shirt actually that's from a run that my family

does to raise money and awareness for Huntington's disease.

It's the Vaughn Family Run.

But with Huntington's disease and several of the

other diseases that we're going to talk about, disorders

that we're going to talk about, you'll find that research

is not quite there. It's getting close, but it's just not

quite there.

And so Earnestine actually said this, and I thought

it was really profound, and it is that "Technology gives me

hope, and I need a lot of hope."

And so what we find is that that's indeed what

happens with folks, is that the technology is related to

their hope and getting folks back into the communities of

their choice and keeping the job a little bit longer, being

able to get education and meet their goals, if you will,

living independently longer. So we're going to give you

more information about that.

We wanted to also explain that there are categories

of acquired disabilities. There's permanent stable, and

then there's permanent degenerative.

The permanent stable we're not going to cover

today. We will be covering these down the road. There's a

whole list of these, but they include spinal cord injuries,

traumatic brain injuries, CVAs/strokes, cerebral palsy.

And what that means is that there's a permanent --

an incident happens, something happens, and then there's an

injury of some type or some process, something that's

happened -- an accident -- but the person is stable. The

injury has occurred, and then there's not a progression

necessarily of any degenerative way. That's not the

process that's happening there. It's stable.

Then there's permanent degenerative. And when

we're talking about that, we're talking about things like

Lou Gehrig's disease, ALS, multiple sclerosis, Parkinson's,

Alzheimer's, Huntington's -- chorea is what it used to be

called, but Huntington's -- muscular dystrophy, AIDS.

There's a whole list. The list goes on.

And so we just wanted to make sure that we were all

on the same page as to what we're going to be covering

today.

We also wanted to cover briefly some information

when it comes to cognition because a lot of this, what

we're talking about, is the neurological aspect, so what's

really happening.

And so I just wanted to share this definition with

you. And so cognition is the act or process of knowing or

being aware of thoughts or perceptions; the various

thinking skills and processes are considered cognitive

skills.

So cognitive ability. You'll hear me talk a little

bit about that, and you'll hear Liz talk a little bit about

that. So it's the intellectual ability, thinking,

reasoning skills.

And then a limitation -- cognitive limitation is

another phrase that you may hear us use, which is

difficulty with one or more of the basic functions of the

brain.

So it could be perception. So the way that you're

getting information in. And that could be auditory; it

could be visual. But it's perception. It could be memory,

how you're storing that information. It could be

expression, the way that you're able to get that

information back out.

I had dinner last night with a very good friend of

ours who is nine years old. His name is Jack, and he was

hit by a boat. And expression is a big, big thing with him

where he has a tough time.

We were sitting there eating dinner, and he kept

referring to all the food, you know, in a way that it

really wasn't. So he was like, "Oh, I love this

hamburger," and he's eating chicken. "Can I have more

pasta?" And there was no pasta on the table.

But we understood what he was talking about. So

how do you work with somebody through that expression.

And then the processing skills. And that could,

you know, be any number of -- it could manifest in any

number of ways. And so we're going to give you some

technology strategies and solutions around all of these.

And processing, what I'm talking about there, it

could be something as simple as organization. How do you

help somebody be more organized, if you will, and how can

they process information and just process their day?

So just to make sure that we're definitely clear on

what the difference is between the permanent stable and

permanent degenerative, I'm going to give you an example

here.

So a spinal cord injury, basically it's damage to

the spinal cord that results in a loss of function:

mobility, feeling, what have you. And it's frequently,

because there is some type of damage or trauma: car

accident, gunshot, falls, dives. We've heard these.

Or disease. The spinal cord does not have to be

severed in order for a loss of function to occur. In fact,

most people with spinal cord injuries the spinal cord is

actually intact, but the damage results in some type of

loss of function.

So that is what we're talking about when it comes

to permanent stable. And I just pulled this information

from the spinalcordinjury.net information.

And it looked like there was a question here or a

comment, and I'm going to have Liz read the comment.

LIZ PERSAUD: Cindy asked, "Will we be able to

download the slides after the webinar rather than taking

notes throughout?" And that's a great question, Cindy,

since a lot of this information is very detailed.

The PowerPoint will be available on our website in

about three or four weeks. But if y'all need it ahead of

time, we can go ahead and get that up there within the next

day or two, or you can also e-mail me behind the scenes,

and I'd be happy to send you a copy of it. And this is

Liz, liz@gatfl.org. I'll be happy to do that.

CAROLYN PHILLIPS: Excellent. Thank you.

And, Cindy, I'm glad that you want to have the

information. That's great. Hopefully y'all will learn

this and apply it.

And thank you, Martha. She's so quick. Thank you,

Martha.

So Huntington's disease. It used to be called

Huntington's chorea because of the movement that folks

would display. As I said, my mom has Huntington's disease.

It runs through my family. I lost my grandmother and both

my uncles to Huntington's disease.

Without a doubt, it's a devastating, unforgiving

disease in many ways. It's a degenerative brain disorder.

There is no cure or effective treatment, really, although

we are getting close. Slowly, but definitely getting

close, which is good.

The way that Huntington's manifests is it affects

the individual's availability to walk, think, talk, reason.

Eventually the person with Huntington's really becomes

dependent upon others for their care.

And Huntington's profoundly affects the ability for

families -- and it really affects the whole family -- but

the ability for not just the individual but for families to

take care of the individual because it does travel through

families. So it becomes emotionally, socially,

economically -- has that kind of effect on people. And I

can verify this is absolutely true in my family without a

doubt.

It was discovered actually in 1872. And it's

recognized as one of the more common genetic disorders. A

quarter of a million Americans have Huntington's disease,

and that's a lot of folks. And there's a lot of folks that

are at risk of inheriting the disease.

If you have a parent with Huntington's, then you

have a 50/50 chance of actually developing Huntington's

disease. You know, my sisters are not nearly as open as I

am about this, and other relatives of mine are not nearly

as open as I am about this, because basically they're

telling you -- I'm telling you something about what may

happen with me. But I feel like it's important to be

honest and open about these things in order to raise

awareness.

So Huntington's actually is researched a lot more

than some of the other disease processes because of -- it's

pure, if you will, is what they say. There's no deviation.

It's not whether or not you got a cold or whether

you got a virus or whether you were born first or last.

There's no variation. If you have the gene, you will

develop Huntington's.

It affects more people than hemophilia, cystic

fibrosis, and muscular dystrophy. A lot of people didn't

know that, but it's true.

So the way this manifests -- and the reason why I

broke these stages out is because you'll see this -- and

we're not going to go into detail with all of the disease

processes, but I want to give you some examples of what

happens and why this is a bit different when you're

thinking about assistive technology strategies and helping

somebody.

There's an early stage, there's a mid stage, and

there's a late stage. And you'll find this with several of

the diseases that we're talking about.

So if we're looking at Huntington's specifically,

the early symptoms are it affects their cognitive ability

or mobility. It could be considered clumsy, if you will,

forgetful. There will be mood swings, involuntary

twitching, maybe a lack of coordination, somebody who was

really coordinated and then they start developing maybe a

lack of coordination. And then also depression.

So then mid stage, as this disease progresses,

concentration, short-term memory diminishes, involuntary

movements. And that's where the chorea came from. It's

actually Latin for dance.

When my uncles and my mom would walk, it definitely

looked as if they were dancing. We would say they were

doing a jig. And so you'll see these motions and

involuntary movements.

Also the flip side of this is that we end up

educating a lot of police officers and other law

enforcement folks because they'll mistake a lot of folks

with Huntington's to be drunk when actually they're just

moving about their day.

So walking, speaking, swallowing abilities

deteriorate. And that's definitely an important thing to

pay attention to.

So thinking about assistive technology with all of

those things. And we'll talk about that in just a few

minutes.

And then the late stage, eventually the person is

unable to care for him or herself. Death follows from

complications such as choking, infection, or heart failure.

And I got that information not just from personal

experience but from the Huntington's Disease Society of

America. And you can actually go to their website,

www.hdsa.org, and read more.

Typically this develops mid life. So we end up

seeing folks who are in the workforce that develop

Huntington's. A lot of folks actually I've met were

adopted, and they didn't even realize that they had

Huntington's, that they were at risk for this.

But I have seen onset as early as age -- I have

seen it as early as age 12. Here it says as early as age

two. And so there's the juvenile form of this. It's

pretty rare, but it definitely does develop.

It affects women and men equally, and it crosses

all ethnic and racial boundaries. It is pretty cool

because I end up getting to meet my relatives, and we're

the rainbow. And I love that, the diversity of my family.

And it's a great thing.

And as I said, each person with Huntington's has a

50/50 chance of inheriting that fatal gene if they have a

child, so they can pass it on that way. And if they have

the gene, they'll develop it.

They were able to isolate the gene in 1993. I

actually met the researcher who did that, and I got her

autograph and got a picture with her. I'm a big fan of the

researchers for all kinds of diseases and researches in

general, but it was pretty cool to meet her.

There's some really cool research that's going on,

and I'm excited about some of those updates. They have

been able to cure Huntington's actually in fruit flies.

And most recently, about three months ago they were able to

cure Huntington's in a mouse, which is great, which is

different than what this article says, which is about

suppression of Huntington's. They were actually able to

cure it, which is pretty exciting. So we'll see what

happens in the future.

And I've got another slide here, too, about some of

that research that's going on where there's some drugs that

may delay the onset of Huntington's.

So that comment that Earnestine said, which is

"Technology gives me hope, and I need a lot of hope," it's

also exciting to see some progress in some of the other

disease research, and so that's very exciting.

And I also wanted to mention down at the bottom of

this slide I just made a little note to myself. It says

"GINA." And this is something that I actually advocated

for, went to DC and talked to a lot of folks about it on my

own time.

But we were able to join together within the

neurodegenerative disease community and advocate for the

Genetic Information Nondiscrimination Act. And that's what

GINA stands for.

This is an act that I think a lot of people don't

know that much about, but it's definitely one of those

things that a lot of us are going to be thankful for

because we are knowing more about our genetic makeup than

any other generation. We are aware of being at risk for

many more things.

And that has affected job status. It's affected

our housing. It's affected relationships and, you know,

whether or not somebody should have a baby and all kinds of

things that are more life-decision things.

And so GINA actually does protect us, which is

great. And so I'd encourage you to find out more about

that. So it's the Genetic Information Nondiscrimination

Act.

There's actually an interview that I did that we

ought to put on our website at some point that I had done

about that act. And I was just so thrilled when it came

through.

So I'm going to turn this over to Liz, who is going

to guide you through more information about muscular

dystrophy.

LIZ PERSAUD: Thank you, Carolyn.

So the next couple of slides go into a little bit

more about MD, muscular dystrophy, what it is, and explains

a little bit more about the diseases, better defined within

the MD family.

So muscular dystrophy, or MD for short, is defined

as a group of genetic inherited degenerative disorders that

affect the muscles. MD causes progressive muscle weakness

and the muscles in someone's body to atrophy. And

eventually what happens is the muscles break down, and

they're replaced with fatty deposits over time.

I'm actually smiling because I was diagnosed with a

form of muscular dystrophy, spinal muscular atrophy, when I

was nine months old. And I'm actually a little chub. And

so we have a joke in my family that, yeah, my muscles are

broken down. They've definitely been replaced with fatty

deposits over time. So it makes me laugh and chuckle about

that.

There are some forms of muscular dystrophy where

the cardiac and smooth muscles are affected. And muscular

dystrophies are the most known hereditary diseases.

A lot of people actually don't know this. A lot of

times they think that muscular dystrophy is one disease,

one neuromuscular disease. But there are actually eight

different major categories of neuromuscular diseases that

are recognized by the Muscular Dystrophy Association. And

then within that, there are more.

So there are these large categories and then sub

categories within that. So there are 43 different types of

neuromuscular diseases recognized worldwide. And this is

just a breakdown.

So muscular dystrophy is motor neuron -- that's

actually where SMA, spinal muscular atrophy, and ALS fall

into, the motor neuron diseases; inflammatory myopathies;

diseases of the neuromuscular junction; myopathy due to

endocrine abnormalities; disease of peripheral nerve;

myopathies; and metabolic diseases of the muscle.

So some signs and symptoms of MD. These can

actually range. They are definitely dependent on the

individual, but these are just some of the main ones that

you see throughout an individual's life span.

So progressive muscular wasting. So basically just

degenerative muscle activity over time.

Poor balance. If they've, you know, been walking

for a time when they were little, and as they're getting

older, they tend to fall a lot or to stumble. A lot of

injuries happen to youngsters as they are in elementary

school, middle school, around that age; and then they go to

the doctor, and that actually leads to a chain of events of

muscle testing and diagnosis of a form of MD.

Calf deformation. A lot of times with some of the

boys that have Duchenne muscular dystrophy, that will be a

sign and symptom too. They're kind of chubby, and they've

got overgrown calves, and that's usually a big sign

indicator of Duchenne.

Limited range of movement. That's all things to

think about when you're talking about folks with MD in the

workforce and things to take into consideration. I know

oftentimes I'm at my desk, and I've got a great work space

that I can reach my computer and my mouse and trackball.

And we'll get into some more of those things as we talk

more about AT.

Respiratory difficulty. That definitely happens.

A lot of folks have labored breathing and then later on in

life sometimes have to be on CPAP or BPAP machines and then

ventilators as well too.

Drooping eyelids is definitely a big indicator.

Loss of bladder control. A lot of times -- that's

also a joke within the MD community. A lot of folks will

have really strong bladder muscles when they're younger,

but as they get older, they tend to lose control.

Curvature of the spine in the back, scoliosis, is a

big indicator of specifically spinal muscular atrophy but

some other forms of MD as well too. And then just the

overall inability to walk.

Few or none of these symptoms can present before

diagnosis. So it can be a lot of those things, as I said,

of folks with larger calves or balancing issues that end up

getting them to the doctor to get all these things

diagnosed.

Onset, symptoms, stages of muscle atrophy,

progressive weakness, and life expectancy are all

determined by what form of the neuromuscular disease is

diagnosed. So diagnosis can start as early as two months

old and well into adulthood as well too.

The great thing is that doctors are no longer

making predictions about life expectancy due to earlier

diagnosis.

It's very interesting, when I was younger and

diagnosed, little, nine months old, the doctors would tell

my parents, "Oh, she won't live to be two." And then I was

two, and my parents took me back to the hospital and said,

"She's still here. What do we do?" And then it was five

and seven and all these different age ranges.

So it makes me very happy to know that doctors are

no longer really making assumptions about that. Therapy,

earlier diagnosis, and definitely the use of AT have helped

to balance out people's progressiveness and their ability

to live longer.

Great news when it comes to muscular dystrophy.

MDA is the world's largest nongovernmental sponsor of

research seeking the cause and effective treatments of

neuromuscular diseases. And they do sponsor a whopping

number of different research projects annually, about 400

annually.

As y'all know, Jerry Lewis has his Labor Day

Muscular Dystrophy Telethon. It's coming up Labor Day

weekend. And they do highlight a lot of the different

research projects that are going on, a lot of the great

updates that are happening.

So there have been very successful breakthroughs in

research specifically for Duchenne, SMA, Friedreich's

ataxia, Myotonic MD, Pompe's Disease, and a whole lot more.

I took all of this information from the MDA

website. It's actually www.mdausa.org. They have actually

a great section on their website about research that you

can delve into to find out more about what they're doing.

And I just wanted to highlight some of the amazing

things that have been going on. In 2007 the FDA actually

approved U.S. sales of an enzyme replacement drug called

Lumizyme.

I don't know if y'all actually saw the movie that

came out last winter called "Extraordinary Measures."

Brendan Frasier was in it. So was -- I spoke, and then

he's slipping my mind. But Brendan Frasier was in it.

Harrison Ford. Thank you, Martha.

And they highlighted the research about this

specifically for Pompe's Disease. So it's a great movie.

It's actually a fun way to find out more about the

research. But it gives the whole life story of the family

involved. So that's actually a great, great, great

discovery within the MD community.

And a lot of these kids that we know with Pompe's

Disease are getting this antibiotic to replace the acid

maltase enzyme in their system, and a lot of them are

reversing some of their muscle progressiveness and have

been able to sit up more and have been able to do more,

which is absolutely wonderful.

Just last month, July 2010, a highlight in the SMA

community, spinal muscular atrophy community, of MDA

highlighted that antisense treatment restores full-length

SMN protein in SMA mice.

SMN protein is the protein that folks with spinal

muscular atrophy are missing in their brain. So as they've

discovered this, what they've done is mice -- thank

goodness for all the mice out there that have given their

lives up for treatment -- with a disease resembling a mild

form of spinal muscular atrophy have been able to show more

production in their tails and the way they hold their body

up and things like that. So it's actually a great

breakthrough in some of the work that they're doing with

that research.

So I'm going to actually pass this on to Carolyn to

talk a little bit about ALS. Or I'll take ALS.

So a little bit about ALS. Amyotrophic lateral

sclerosis. We always get tongue-tied with all of these

words out there.

So ALS is a neurodegenerative disease that attacks

nerve cells and pathways in the brain and spinal cord.

When these cells die, your voluntary muscle control and

movement dies with them. People with ALS in later stages

of the disease tend to be totally paralyzed. And

oftentimes, and the folks that are in my life with ALS,

it's really disheartening to see that their body completely

is not working -- they have some movement in their eyes --

but their brains are sharp as a whip. And some of the most

loving people that I have in my life are living with ALS.

Many people know ALS by its more famous name of Lou

Gehrig's disease. It struck Yankee Hall of Famer Lou

Gehrig in 1939, and he died two years later. So many

people know ALS by that.

A little bit more information about ALS and the

hope that it's giving. ALS definitely is very

debilitating. It affects an average of 15 people a day.

Those are folks that are newly diagnosed with ALS. That

equals more than 5,600 people a year. And as many as

30,000 Americans currently have ALS.

The average life expectancy of a person with ALS is

anywhere from two to five years from the time of diagnosis.

There is no known cause or cure. But as we said, you know,

throughout many of this, with the advance of therapy and

treatment and also the use of assistive technology, so many

people that we know in our lives are living comfortable

lives and are able to do many things in their community.

And a lot of times people, you know, refer back to

Lou Gehrig and talk about the research and the activity

that's being done in the ALS community, about how his love

of the game and his true spirit and just keeping all of

that activity up in the ALS community.

CAROLYN PHILLIPS: Thank you, Liz. That's very

helpful, and I appreciate you sharing that information.

I'm going to go over some more information about

another process called multiple sclerosis. A lot of times,

Liz and I both find this, where people -- they don't really

know much about these, and they get them all confused.

My daughter has cerebral palsy. A lot of times

people say that she has multiple sclerosis or she has

muscular dystrophy. And I'm like nope, nope, nope, because

that's a pretty big difference. You know, cerebral palsy,

as we said, is stable. So injury occurred, lack of oxygen

in the brain at birth, and here she's stable.

Multiple sclerosis, different disease process.

It's a lifelong chronic disease. And it's actually a lot

more prevalent than people realize. It's an inflammation

that occurs in the white matter of the central nervous

system.

It's pretty exciting that we're able to talk about

these disease processes the way that we are now. I was

meeting with one of the top neurologists over at Emory

about three weeks ago. We had dinner. And she's like, "I

feel like all of y'all in the community are little

geneticists." And I'm like, "Yes, we have to be because

our lives depend on it."

Physicians use neurological examinations to take

medical history when they suspect MS. I've had several

friends that have gone through this process, some that have

actually ended up being diagnosed with multiple sclerosis,

MS; and others that thankfully, you know, that that wasn't

what was going on, and we were able to figure something

else out. So it's a neurological exam.

And then there's also magnetic resonance

spectroscopy. MRS, is what we'll use instead of that. And

that gives more information as far as the brain chemistry

and what's really going on in there.

So there's no single test that detects MS. A lot

of people, they don't know that, but that's indeed the

case. And you can get, once again, all the information

that you would like from the MS website. And it's the MS

Society website.

So the symptoms, once again, talking about what

starts out and then kind of how it progresses. Symptoms

could be mild. There are lots of folks that have MS that

are living with it very successfully.

It could be an initial symptom of blurred or double

vision. It could be, you know, a spectrum, you know,

green, red color distortion. Blindness just in one eye

could be. It could be muscle weakness. It could be, once

again, getting back to that clumsiness or difficulty with

coordination.

About half the folks with MS experience cognitive

impairments. Now, remember I defined that earlier for you.

And it could manifest in ways that affect their

concentration, attention, memory, and even judgment. And

I've seen that. And we actually added the judgment piece

in there because that plays a part.

The cause of MS really is elusive. A lot of folks

just don't know where it came from or how it started or

what's happened. There's been all kinds of speculation

about that.

But most people with MS do have normal life --

whatever normal is -- but they have a normal life

expectancy, unlike the other disease processes that we were

talking about before.

The vast majority of folks with MS are affected in

a mild way. But the worst cases -- and I have actually

seen this even recently -- it could render a person unable

to speak, to walk, to be independent. And that can be

really hard.

A lot of folks do get that back, get some of that

back. I've seen folks that were paralyzed on one side of

their body, and then they get it back as the lesions heal

that are in that white matter. As it heals, then they get

some of that back. Not always back to the same level that

they had originally, but it can come back. I've known

folks that have been blind and are no longer blind, but

their vision is still somewhat affected.

So there's no cure for MS. Until recently,

steroids. That's pretty much what folks would do. And

while they can't affect the overall course of MS, it can

reduce the duration and severity of the episodes.

So there are some FDA new drugs that have been out

there. And I know some folks who are very happy with some

of the progression that they've seen when it comes to

research. And so that's very exciting.

So now we're going to talk about the assistive

technology.

And I'm wondering. I'm seeing the Disability

Resource Center, that they're saying that the connection is

gone.

Is anybody else having that experience? If you

could just send us a little note if you can hear us fine.

It would be good to know that. Okay. Yeah.

So yes, if you can hear us -- I'm going to actually

type something in here to see if y'all can hear. Can you

hear me? And I will actually try to adjust the volume.

Oh, good. I'm glad. Thank you. I appreciate you letting

me know.

All right. I'm glad. Thank you, Cindy. Okay.

Well, then we'll keep progressing. And I can actually hear

myself on the speaker.

Tammy, thank you for letting me know. I appreciate

that.

We have these firewalls here, and it could be a

problem with our firewalls. So I apologize. So if you

can't see or -- well, if you can't hear me, I guess you

can't hear me say this -- but it would be good to log in

and log back out. That's what Caroline Van Howe usually

recommends.

So when we're talking about assistive technology

and considering what accommodations and what assistive

technology would be best, there's some things that we want

you to consider.

I've got a picture up here of two of my favorite

folks. Mark is the gentleman. He's actually demonstrating

a thing called a head mouse. It's old technology, but it

did work for him. He has MS, and he's open about that.

And then the person next to him is Valencia, who is

just wonderful. And she's one of those folks that I look

to for inspiration in a lot of areas of my life but

definitely somebody who lives gracefully with ALS.

So why do we need assistive technology? For a

person without a disability, technology really does make

things easier. And I'm going to turn this over to Liz to

give more detail about that.

So Liz.

LIZ PERSAUD: Oftentimes we find ourselves using

these, quote, unquote, everyday things like our iPhones or

our computers or even automatic doors when we're going in

and out of the grocery store, curb cuts outside.

All of those things make folks without

disabilities -- make their lives easier. But for a person

with a disability, when you think about it, technology

makes things possible.

So if it weren't for my iPod Touch or my cool phone

that has the ability for me to slide my finger around as

opposed to hunting and pecking for letters, I'm able to

communicate with my family, friends, and co-workers.

My computer. Able to get my work done, able to be

on a webinar and be fully accessible here with y'all

delivering this message.

Automatic doors. I'm able to go in and out of

buildings on my own. And you find folks are able to do

things on their own.

There's a great picture here of a gentleman that we

know named Greg Sharp. He's actually using multiple

different types of AT: Sip-N-Puff and also voice

activation for the computer, as well, too.

CAROLYN PHILLIPS: Okay. And actually I flipped

two slides.

So we really would encourage you, especially when

it comes to working with folks with neurodegenerative

diseases, to take a team approach. This is pretty darn

important. The person with the disability absolutely needs

to be the key.

And to answer your question, Pat, we're not moving

our head. Actually we're holding our heads very still, and

we're trying to hold the microphone very still. So I'm

sorry about the sound fading in and out, and we'll do some

more investigation as to why that might be going on.

But back to the presentation.

A team approach. And the person with the

disability absolutely needs to be, you know, the top of the

list. We've got countless examples of folks who have gone

in and said, "Oh, this person, they have ALS. And what

they really need to do is have an environmental control.

And they need to have a unit installed. And they need to

have an AAC, alternative augmentative communication

device."

And the list goes on. But that's not at all what

the person needed. What they really wanted to be able to

do is change the channel on the TV themselves.

So it really comes down to, What is it that that

person really wants to do? And then including the circle

of support and family, whether it's family of origin or

family of choice, whatever that person considers to be

family.

And then case managers, technologists, occupational

therapists, speech language therapists, pathologists,

physical therapists, engineers. All kinds of folks need to

be on this team. And usually I let the person with the

disability decide who their team is going to be.

And I have a slide here about the family centered

approach. I really bring this in whenever I'm working with

folks with degenerative neurological diseases because it

really does -- it's a different dynamic in some ways.

I have yet to work with an individual that doesn't

have some type of family centeredness going on with them.

And so what we end up doing is we focus and we make a plan,

and we focus on: What is it that the family can do?

What's the capacity of the family? What's this going to

look like over time?

It's different when you're talking about ALS

versus -- you know, where it could be a two to five years

or Huntington's disease where we're talking it could be two

to 30 years. You know, my mom has been living with this

for 20 years.

So in looking at that approach and what's the

capacity of this family? Everybody's aging. What's going

to happen? Or looking at somebody that has MS where the

symptoms may change and you may need different things at

different points.

And you also find, if you take this family-centered

approach, a better way to really understand that

individual.

There's a guy that I was working with that his wife

actually got pregnant, and he was diagnosed with ALS. The

thing that he wanted to do, the thing that really made a

difference to him, is he wanted to have a communication

device where he could coach her as she gave birth to their

son. He has since passed. But that's all he really wanted

was to be able to coach her.

And so we programmed all these things in there

where he was telling her she was doing a great job. And he

also programmed the name. She let him name the baby if it

was a girl or a boy. And it was very cool. It was very

cool to be involved in that. But I understood him a lot

more when I met his family and met his wife and all of

that.

And then also see the services that are provided

within the family and the values and priorities of that

family. So it really has to be more of a family-centered

approach as opposed to some of the other disabilities that

we work with. You know, people with learning disabilities,

yes, it could be a family-centered approach, but it doesn't

have to be for that to be successful.

Then we always refer back to the Cook & Hussey

model, which is the HAAT model, looking at the human. So

what are the skills and abilities of that person? Once

again, considering the word "degenerative." So this is

something that the capacity may be going away over time.

And this is going to change, so this is something that's

very important to consider.

What are the activities that are important to that

person? So I have sat down with folks, in using the

example of communication, where maybe at first it's an

amplification issue where they don't have enough strength

to project their voice. So we use something as simple as a

chatter box where they can amplify their voice.

But then we know, in a few months or a few years,

they're going to need a different device because that

ability may go away, and they'll need something that they

can use to speak.

And then we also will look at access. You know,

how are they going to access that? Is it going to be

direct select where they're using their finger, or are they

going to be using a switch, or are they going to be using

their pupil of their eye for an eye-gaze system? So what

are they going to be using? So what is the activity that's

important to that person?

And then what's the context, the setting, whether

it's that hospital setting where this wonderful man wanted

to help coach his wife or -- you know, what setting are we

talking about?

Is it work? There are several folks with

Huntington's disease and muscular dystrophy that we've

helped stay employed. And so looking at the context of

their workplace. What's the environment, and how can we

keep that something that's successful for that person?

And then what assistive technology devices and

strategies can be used to bridge the gap between the

person's abilities and the demand of that environment?

Liz and I often talk about, and Martha too, about

how disability really is often a consequence of the

environment. It's not always just about a physical, you

know, issue or what have you. It's often because there's a

barrier that's either attitudinal or a physical barrier.

So how can we knock down those barriers to make sure that

folks are successful?

The main thing that we try to do is really promote

the strengths and manage weaknesses. And this is just a

simple graph that I use whenever I'm sitting down working

with folks.

So when I was working with Earnestine, for example,

with some of the AT, assistive technology, that she wanted,

we actually -- I used this graph and I said, "All right,

Earnestine. What is it that you want to do?" She, at the

time, wanted to stay employed. And then after -- so we've

used this in many ways.

The first time it was about staying employed. And

then the next time it was about living independently. And

then the next time it was about wanting to be able to

change the channels on the TV.

So the first time when we were looking at

employment, you know, we talked about what are the

strengths that you're bringing to the job. And we listed

all of those things, and went up the line. And then what

are some of the weaknesses, and we listed some of those.

And then in the boxes we put different strategies and

solutions when it came to assistive technology.

She was able to stay employed actually for about

two and a half years longer than a lot of other folks would

have because of assistive technology. And I see that as

great success. She definitely saw it as great success.

And that's why she said that whole comment about technology

gives her hope, and she needs all the hope.

We also looked at a holistic approach. A lot of

times -- and I think this is where abandonment happens with

technology, is people will only look in one environment

instead of looking across environments and seeing what will

work. So we'll look at the school setting. We'll look at

the work setting. We'll look at what's happening socially

and what's going on personally.

An example of that, a technology that crosses over,

is there's a person that I was working with who has

problems with organization. Once again, they're having --

they have a neurodegenerative process going on, and the

workload was just unbelievable.

And so they had this calendar that they were trying

to organize everything with, but it was on their desk at

work. And so we actually explored all kinds of options and

found that, you know, a BlackBerry that syncs with a Google

calendar that they can access anywhere was helping make

things more successful. So that's good.

This person is still actually going to school; is

working; is trying to keep bills, you know, being paid and

trying to move forward. So that's good. So we took a

holistic approach, and that's what we do.

LIZ PERSAUD: So selection of an AT device. It

depends on analysis of the following conditions. So just

things to consider when you're selecting an AT device.

So prior experience or knowledge.

And interests. What is it that the person already

knows about AT, taking into consideration the research that

they've done.

The individual's specific strengths, and not just

strengths but weaknesses, as well, too, and kind of playing

into that and what works best for them.

The specific device for reliability, ease of

operation, technical support, and cost. All of those

things to think about later on down the road.

Is it something that they'll be able to use later

on as they progress? Is technical support available 24/7

online, via phone. Usefulness across settings, as Carolyn

mentioned, in all aspects of life. And then also, again,

usefulness as symptoms manifest or as they progress.

The most effective technological products are able

to level out the playing field. So bringing that person up

to the level as their peers. Again, whether it's at work

or in school or just in the community. It works in

cross-settings.

AT that's portable is absolutely wonderful. So

something that you can maybe slip in your pocket or keep on

your lap tray or keep in the bag on the back of your chair

or in the pocket of your walker that you're able to take

with you.

Easy to maintain. Is it affordable and easy to

replace and to maintain as well too? Then again,

technological support and accessible training format.

Staying off the FAST track. We say this often. We

say that "FAST" stands for frustration, anxiety, stress,

and tension.

A lot of times those things can definitely affect

somebody who's dealing with DND, degenerative neurological

processes. The more they are frustrated, the more they are

stressed, it can really manifest those symptoms, bring them

forth, and make their days seem a whole lot shorter, as

well, too. So using AT, that helps them to stay off that

track.

CAROLYN PHILLIPS: Those are great points, Liz.

I think that one of the things that you and I both

have talked about is maximizing the time that somebody has.

When you're at your best, making sure that you are able to

produce what you want to produce and do it well.

There's a lot of talk out there, and it's been out

there for a while about evidence-based practice. And what

we do is we do try to pull from this, evidence-based

practice.

So looking at the personal evidence; looking at

external evidence; what's working in other communities;

what's working with other folks; what's working, you know,

internally; and matching that with the skills and knowledge

over time.

But I will say that I am willing to take all kinds

of risks within the degenerative neurological disorder

community, the folks that have that type of process going

on, because time is of the essence. And so a lot of times

I will take a risk with assistive technology, try something

new and get really creative. And that actually has paid

off many, many times.

So we wanted to talk about some really cool things

that are happening that are out there. This is about the

direct brain computer interface. And there's some really

cool technology out there. And when we're talking about

evidence-based practice, this comes into play.

This is a study that's being done at the brain lab.

And the mission of the brain lab, it really is to pioneer

real-world applications for research for biometric

technologies.

Some of these technologies can be very invasive,

such as putting a sensor within the brain and then having

somebody think about moving a mouse and, sure enough,

they're able to move it.

Some of our computers actually within the Tools For

Life network have been used for this research, by the way,

which is pretty cool. We were able to give them free

computers so that they could do this.

And then exploring mainstream applications for some

of this. So we're going to give you some examples of how

technology is being used within this.

So there's invasive where they implanted

electrodes, a single neuron, and then they wear -- so

there's a picture over here where they actually have -- and

it's a tiny, tiny, tiny little neuron that is placed within

the brain.

And then there's noninvasive, which can be a scalp

that has electrodes on it. And so they're researching both

of these.

The main goal here really is to learn how we can

use this type of technology in order to do things in real

life. So real-life application.

So one of the things that they were doing is

restoring motion. So neural prosthetics where the brain

can relearn how to move limbs via artificial nervous

system. So it's something that's using the computer to do

this.

And I actually did see -- it was maybe a year ago

where they were able to use this type of technology to pick

up something as delicate as an egg, which is pretty darn

cool, pretty darn cool. So I'm excited about where we're

headed with that.

There's also things like this: The aware chair.

Once again, we're seeing this out of Georgia State

University in our own backyard. And it's an integrated

communication and environmental control system, and it's

controlled neurally. So it's an intelligent wheelchair, if

you will.

So once again, it gets away from that somebody has

to use their hand or any of these other ways that somebody

would have to interact the way that they typically would

have to use a wheelchair.

So we're seeing a conversion of environmental

control prediction, and that's very cool. And it learns

the habits of the person, and that's pretty cool. It also

provides emotional expression. So I'm excited about where

we're headed with some of that. So we wanted to share some

of the cool things that are going on out there.

We wanted to break this down for you, and so we're

going to go through different areas when we're looking at

solutions for DND and AT, assistive technology.

So we're going to look at energy savers. That's a

term that actually Liz and I use all the time. We're going

to talk about access. We're going to talk about memory

aids. We're going to talk about attention, organization,

and communication aids.

And at the very end of this, I've actually got

information as to where we gathered a lot of this

information for you. So you can go back and do some more

of your own research.

So when we're talking about energy savers, I'm

going to turn it over to Liz.

LIZ PERSAUD: This is Tilt in Space and Reclining

Power Wheelchair. This is an example of a chair that's

actually very similar to the one that I'm using, but this

is wonderful.

When you tilt and recline, it allows for maximum

positioning. So a number of different positions that you

can do. It reduces swelling in the legs, pain and

discomfort from scoliosis, and also relieves fatigue and

neck muscle strain.

No lie. This has been a big saver for me.

Yesterday I was working, tilted myself back. Within two

minutes I felt like I could go again for another three or

four hours.

Some other solutions that folks often use in

getting to work and out and about in the community is a

Bruno Turnout. So basically a seat in your vehicle will

turn all the way outside the car, and it can lower down.

So that way you're not having to jump over those obstacles

of hopping into your car and positioning yourself.

Abbreviation expanders. This is actually

wonderful. It can be found in WordQ, REACH, EZ Keys for

Windows. We're actually going to get into a couple more

examples of the software that you can purchase to use this.

But basically you would type, and it would pop up

words. It kind of predicts what you're going to say. So

let's say you're going to type in "webinar." And you type

in w-e, and it would pop up certain words that would

begin -- welcome, webinar, different things like that --

and you would just select the words that you're using. So

this really cuts down on a lot of that repetitive motion of

typing words letter by letter.

CAROLYN PHILLIPS: And abbreviation expanders

actually can be used -- there's three ways you can do this

within Word and other just mainstream technologies. We

love mainstream technologies.

And there's the person I was telling you about

before who we were trying to make sure that he kept his

job. We use abbreviation expanders like crazy with him

because he does a lot of the same things over and over in

his job, so he has to produce similar letters, and he has

to do similar tasks.

So what we've done is come up with a series of

abbreviation expanders that actually can have as much as

like 500 words within that, which is pretty cool, and it

saves all kinds of energy.

And then also looking at Microsoft Word and using

simple things like auto correct. Maximizing the person's

energy, minimizing the amount that that person really has

to do when it comes to interacting with the keyboard using

auto text.

Auto summarize. If the person is just trying to

get -- you know, has to go through a lot of long documents

but just needs the main points. So teaching about auto

summarize and using templates and formatting and

highlighters and all of that.

LIZ PERSAUD: Speech-recognition software. This is

just a picture of Dragon NaturallySpeaking but a great

energy saver. So again, instead of typing, you would just

speak, just as I'm speaking here with y'all, and the words

would pop up on your screen.

A lot of times, if you're getting long e-mails from

me or documents, I'm using speech-recognition software. So

it's wonderful to be able to sit back, relax your body, and

just speak and get all of those words out there and be able

to communicate.

CAROLYN PHILLIPS: Liz, do you mind telling them a

little bit about -- one of the things you and I both use,

speech recognition, and I am so excited about the iPad and

the iTouch, Dragon NaturallySpeaking there through Nuance.

Do you mind talking a little bit about that? I

think this is super cool.

LIZ PERSAUD: We've recently purchased, within the

Tools For Life assistive technology lending library, the

iPad and the iPod Touch. But I actually use Dragon

Dictation. It's an app -- it's for free -- that you can

get in iTunes in the app store and put it on your iPod

Touch or your iPad. And I love it.

When I'm sending little text messages or e-mails

from the iPod Touch, I'm literally just holding it up to my

mouth. I can also plug in a headset and a microphone into

my iPod Touch and just speak things that honestly would

take me anywhere from 10 to 15 minutes to get out a small

e-mail or text message if I'm really trying to communicate

something in detail.

So it's great to be able to have that cool piece of

technology that everybody is carrying around for numerous

different reasons. But, hey, little do they know that I'm

using it to really communicate with folks. So it's nice to

be able to have that handy.

CAROLYN PHILLIPS: Yeah, that's a real energy

saver.

Digit voice recorder. Once again, something that

can really save energy. A lot of times a lot of the folks

we're working with it's fatigue. And so they'll be going

to class, or they're trying to get through school or get

through meetings and what have you.

So rather than taking all those notes, they can use

something like this that converts audio data to digital

signals and compresses them.

It's not quite there. There's some bugs with this

Olympus. That's actually my Olympus that was stolen

recently. So I'm going to get a new one and try out the

new technology.

But the thing is that I'm excited about where this

is going and how it really has helped a lot of folks.

There's also the livescribe. And our wonderful assistive

technology specialist, Martha Rust, who you definitely need

to get to know, she bought one of these recently for us.

And I'm excited about where this technology is

headed when it comes to actually just saving energy. And

once again, you can use it to take notes and to make those

minutes or just your information easier to get used in

different formats, which is great, in a quick way. So I'm

excited about where that technology is headed.

Texthelp is something that actually was developed

for folks with learning disabilities. But I had found that

we've been able to use this very successfully within the

DND community where they can actually just relax and listen

to a document being read.

And Kurzweil also does this. WYNN, which stands

for What You Need Now, does this also. And we're going to

talk a little bit more about those products in just a few

minutes.

There's also the word prediction on this. And all

three of those products have it also. There's also some

freeware out there. But I wanted to make sure that you

would think about this type of technology.

The word prediction, what's so helpful about that

is it reduces the amount of times that person has to

interact with the keyboard, and that helps. So any way

that you can save energy by reducing the amount of energy

that's put out there, that's great.

WordQ also does this. You can get a 30-day

download for this, which is great. The other thing is

using dictionaries and thesauruses and all of that, once

again, can save energy rather than somebody having to go to

physically pick up a dictionary or having to take that

extra step. It's helpful.

The next slide is actually about InstantText. And

this is another saver that's out there. I've used it a

little bit.

And basically the way that it works is you can use

abbreviation that doesn't have any memorization. You don't

have to remember all of it. It can continue your

sentences. It learns kind of how you do things. It's

great for things that are routine. So technical writing,

legal documents, transcripts, letters, all of that. So you

can check that out. That's something that you can actually

find online, and that's a mainstream software.

Same thing with ActiveWords. This is also free. I

have it loaded on my computer, and I'm still working with

it. I did try it out with somebody that I'm working with

that has MS, and they liked it a lot. And the way that

that worked actually is it would help their whole computer

communicate more effectively and more efficiently by just

using a few key strokes. So that's a great thing.

Bookshare. A lot of times this is one of those

things that bugs folks, is that they're not able to either

physically pick up a book. I remember that was the case

with Liz. It definitely was the case with my mom and some

other folks.

And I love this idea of books without barriers. So

being able to use and access accessible books and

periodicals. You can join Bookshare. The membership is

only $50 for an individual. At least that's what it was.

I'm a member of it, and I absolutely love it.

But once again, I've seen where it can be helpful

in getting people to think about other things, you know,

still be a member of book clubs and have current

conversations with folks and all of that.

The NEO also is a great energy saver because it's

not as heavy as a laptop or a lot of laptops. And it does

have, you know, the capability -- it's very intuitive.

It's low cost, pretty inexpensive.

And the Dana is also another good product when it

comes to energy savers, if you will, and being able to come

up with an easy way for somebody to take notes, what have

you.

And Tammy from North Carolina said that Bookshare

is available free to students in the U.S.

Thank you, Tammy. You are such a good resource.

Right on. So thank you.

All right. So the next thing that we're going to

talk about are solutions for -- and by the way, there are

lots more energy-saver solutions, but we just wanted to

give you kind of a little CliffsNotes version of that.

So access is the next one we're going to talk

about. And the thing that we are going to talk about, once

again, with access is looking at using somebody's voice.

So seeing if somebody can actually access information

quickly using something as easy as SpeakQ. That's a good

solution out there. There's also Dragon NaturallySpeaking,

just like we were talking about before.

Dragon Dictate. I remember when I first got into

this field, it was -- I was at the University of Georgia,

and it cost $25,000. It was crazy how expensive this was.

And now professional versions and other versions you can

use to actually control a lot of functions on your

computer, which is nice. And so I would definitely

consider some of those solutions.

There's also Windows Speech Recognition, which is

embedded in any Windows computer operating system. So when

it comes to using XP or Vista or any of the later versions,

so I would encourage you to check some of those out too.

And once again, I've used this successfully with folks.

LIZ PERSAUD: These are some accessibility options

that are within the Microsoft Office Suite. So things like

StickyKeys. You can press one key at a time as opposed to

pressing down multiple keys like function-something,

alt-something, control-alt-delete. FilterKeys ignores

brief or repeated key strokes and slows down the repeat

rate. And ToggleKeys gives you auditory feedback so you

can hear tones when you're pressing certain keys as well.

CAROLYN PHILLIPS: And I know you've used several

of those, yes, which is very cool.

I am so excited about a lot of the things that I'm

seeing when it comes to some of the newer technologies

coming out. The iPad that we have here at Tools For Life.

And actually all of our assistive technology resource

centers will be getting one -- hopefully more than one of

these.

And so there's all kinds of apps. We're actually

going to be doing a webinar just on the apps coming up.

We'll be doing that soon because we're just blown away by

some of the apps that are out there.

But they do have built-in accessibility features,

and that's important to recognize. I actually was able to

use an iTouch and turn it into a remote control for

somebody the other day.

Yes, which is very sweet. Liz just said it was

sweet.

It was very sweet. And it was for somebody who was

having a tough time accessing the TV. And so we were able

to do that. And we've been able to connect some other

devices to it. So I like that, being able to use

technology that way.

And also, once again, when we're talking about

access, being able to quickly, you know, get to notes. Be

able to navigate, way finding, you know, help with memory

and other things like that. It's just nice that it's an

inclusive device.

Now I know you're not a huge fan of the iPad. Do

you have any thoughts you want to share about that?

LIZ PERSAUD: There are definitely some -- there

are definitely actually a lot of features that I like with

the iPad. As I'm using it more and trying it out here,

because of the reasons that we purchased one, I'm finding

that I like it more.

But because of my limited mobility, it's difficult

for me to reach certain things. But I know that we're

looking into a stylus or a pointer that works specifically

with the screen on the iPad or iPhone or iPod Touch. And I

think for some folks that have limited mobility, that would

be great for them.

One thing that I actually do love, though, which is

on this next slide, is the Kindle. I know that there are

many different types of eReaders out there. Some folks

like the Kindle. Some folks like the Sony eReader,

numerous different things.

I received this about a year and a half ago as a

present. And again, it's just been amazing for me to

actually read books. It's very lightweight. The screen is

dim, not as bright as like on an iPad. And the buttons are

very easy to press. So I'm reading books and magazines and

blogs like crazy because of that.

CAROLYN PHILLIPS: And as many of you probably

know, there's a lot of information about the Kindle about

it not being fully accessible. Those of you within the

learning disability community and others like me are like,

"Ahh, this isn't a great device." I think I used it for a

minute, and I was like, "Forget the Kindle," whereas it's

been one of those very energy saving and access things for

you. So I'm glad that somebody likes it.

The next one is the ClassMate. And this is

developed by HumanWare. It's a reader, and it's something

that you can use for digital audio books. You know, it

displays information, highlights text, all of that. And so

it takes the Kindle, if you will, to the next level. It's

more of a specialized piece of technology.

And we will be getting a couple of those into our

assistive technology resource centers so that y'all can

borrow those if you would like. I have used the ClassMate

with somebody that has MS, and they were very happy with it

because it helped with many of the symptoms as things

progressed for them.

So at first they got it because they just needed to

have the audio, things read out to them. But then their

vision was affected, and so they were able to enlarge

things, and that was very good.

Oh, and the Nook is good. I agree with you. I

really like that.

And, Martha, thank you for giving some information

about how the Kindle has now dropped to $139. Our AT

specialist is also a bargain shopper. That's right. So

that's great. And we like that.

And then also we had talked about Kurzweil, but I

just wanted to make sure I mentioned that. Kurzweil 3000

is the one that we're actually talking about. I've used

this very successfully with folks with DND, and that's

great.

Same thing with REACH. This is software that

provides all kinds of onscreen keyboards, can really save

that energy, but it also can help with access. It's got

scanning abilities, which is very helpful. And they have a

bunch of built-in keyboards, and that's a very helpful

thing. Also they have word prediction and sentence

completion, which can be very helpful.

And then we have other software modifications that

can be made and mouse alternatives.

Do you want to talk a little bit about mouse?

LIZ PERSAUD: Sure. Different mouse alternatives,

things like the trackball. Sometimes that's easier. As

opposed to moving your hand around, you can keep it still

and just move the ball around the trackball. Joystick.

Switched joystick or cursor keys. Head sensor or mouth

stick. Eye gaze. We'll actually give an example of that

in just a few moments where you just use your eyes to

control your computer. And the keyboard only. There are

times that folks just use the keyboard for a mouse and

keyboard function.

Again, different examples of keyboard

modifications. Key guards. That actually is a piece of

Plexiglass with the circles cut out over the keys. I

actually have a smaller keyboard that has a key guard over

it. It allows me to rest my hands on the keyboard any way

I want and not hit extra keys that I'm not intending to

hit.

Alternative layouts. Different, you know, so you

can have ABCs, you can have QWERTY, different colors,

one-handed keyboards. Membrane surface keyboards minimize

required pressure.

That's a picture of those really cool keyboards

that you can roll up. I think they're dishwasher safe. It

actually helps when folks have issues with drooling as well

too. So very great with spills as well.

ERICA, eye response technology. Again, you can

just use your eyes to control your computer and your mouse

functions. Also an environmental control. And there's a

wireless option as well too. So that's great for folks who

have limited mobility and just want to use their eyes to

move around.

CAROLYN PHILLIPS: Excellent. Thank you, Liz.

And once again, we're just giving kind of an

overview of the different things to think about. Hopefully

y'all have learned something through this. I'm hoping

that, you know, it stimulated some thought and that you're

going to be able to work with some folks and get more

in-depth with them and maybe help them in a different way.

The next thing that we're going to actually talk

about -- and the ERICA, you would move to that as a more

advanced solution. I have used it twice with folks where

it was very successful and -- very, very successful

actually. And one of those folks has ALS and is still

using it, and it's great. It's really eased a lot of

the -- kept them off the FAST track, if you will.

Memory aids. And remember when we were talking

earlier when we defined cognition. So memory is definitely

a part of this.

This is a watch that was developed to remind

people. It assists with alerts. You can say things like,

"Oh, remember to take your medication at this time," or

what have you. It's very easy to use. It's got a large

screen, and it's something that you can wear.

I've used cell phones for this also where we can

plug in different alerts, and that's a great strategy where

you can use that cell phone.

But the nice thing about the WatchMinder is that

it's attached, whereas some of the other folks, you know,

can't even remember where the cell phone is. And I'm like,

"Okay. So we may need to glue it to you or something," or

use the WatchMinder.

The other cool things that are out there, memory

aids. I work with some folks that have had Alzheimer's

and -- early-stage Alzheimer's and other processes that are

going on where they get lost very quickly, orienting

themselves around and trying to figure out where things go

and how to get from point A to point B, have used different

GPS systems, Google Maps for mobile phones, all kinds of

things. A lot of times I use it with speech output, and

that makes a big difference.

And also, when it comes to memory, is using a PDA,

you know, other types of really cool tools that are out

there, you know, smartphones, the iTouch, which has come

down in cost, and you can use that for any number of

functions.

And as I said, we're going to be doing a whole

presentation on all the different apps that are out there.

But this can be great when it comes to memory.

Google Mobile. I actually like this a lot where it

can help people when it comes to figuring out, you know,

once again, how to get from point A to point B, but it can

also help when it comes to figuring out other things in the

community. And there's a lot of really cool things that

are out there when it comes to all of that.

There's a lot of devices. And I'm seeing, you

know, there's an app on the iTouch and -- you know, for any

of the iPhone, iTouch, iPad -- that's called LockBox that

Martha introduced me to that can help somebody remember

their passwords.

But this is another way to do that. This is Micro

Logic. And it's OneLoc, is what it's called. And it's a

very compact way -- it's actually a thumb drive that you

can carry on your key chain, and it helps you keep all your

passwords and all the data that you need. And it's

protected. And it's a pretty cool solution that's out

there when it comes to memory.

There's also some really good solutions when it

comes to attention. And this is one of those areas that I

find that frustrates a lot of people. They'll be sitting

in church or synagogue or temple, and they want to hear

something, they want to focus on something, but they're

distracted, and they find that they're more distracted more

easily. I know that's something that my mom complained

about. It really bothered her.

So some of the folks we've used personal FM

systems. A lot of times you can get those free like at a

movie theater or in other environments where they have an

FM loop system. So it's good to educate people about that

and encourage them to ask about those things.

But you can also get something -- and this is much

more expensive -- but that's the Hear-It can help. And

it's a directional microphone, which is good.

There's also magnifiers. And I have used these

with folks for years when it comes to helping somebody just

be able to focus, even some with lights. And it's also an

energy saver, but it also helps with attention, which is

great.

And then WYNN. As promised, I said I was going to

bring WYNN up again, and so here it is. And it

basically -- it's got a highlighting feature, just like

Kurzweil and Texthelp, that can keep bringing the attention

back to what's being read. It's that multimodal learning

style, if you will, because you can hear it out loud and

follow, which is great. And it also has those other

features that are so great: the word prediction, the

dictionary, spell check, thesaurus, all of that.

And once again, you can try any of those -- the

WYNN, Kurzweil, Texthelp -- out either here at the Tools

For Life state office or any of the assistive technology

resource centers. And I would encourage you to do that.

So the next ones that we're going to cover are

organization.

And one of the things that is something that I've

found that frustrates a lot of the people that I'm working

with that maybe are going through, you know, a DND process

where they're just having a tough time organizing their

world.

So I've used Inspiration not in the way that you

typically would, where you would use it to write papers and

create an outline and all of those things, but really more

in those mind mapping ways and understanding how things are

connected. Like helping somebody organize their office and

doing -- you know, connecting the dots, if you will, of

their life and using this as a tool for organization.

You know, color coding something on Inspiration and

making it a file and then having the same color files in

their file drawers, if you will. Or, you know, organizing

their house or organizing their work space and using this,

because it's a graphic organizer, which is really nice.

And you can import pictures, and it's low cost, $79 or $69.

And so you can use that in a way that's very efficient.

I also like this Office OneNote. And I know this

has been used more with folks -- there's a person that I

was working with who was trying to keep their job, and they

have MS. And so their company actually has OneNote. And

so they were able to use it. They had never used it

before.

And what it does, basically, is it helps pull

together, you know, all their information from e-mails and,

you know, all the different word-processing programs that

they were using -- Excel, all of it -- and pull it all

together. So it's not just an energy saver, but it's also

an organizational tool, which was very, very helpful.

And then we've got some communication tools. We're

moving towards the last part of our presentation.

We talked about the iPad, but I wanted to bring it

up again because we're going to talk a little bit in more

detail about this. There's some really cool programs that

are out there that can help with communication.

My daughter is using the iTouch. We didn't get an

iPad for her, but we got an iTouch for her. The iPad, it

starts as low as $500, which is really great for technology

that's being introduced into the community.

But here's the iTouch, and it's about $200. And

thankfully Mira has not lost this device. But we were

actually at a dinner party with a friend of ours who has

Huntington's disease, and Mira was actually showing how to

use this. And we were showing how to use it with

Lingraphica, which is cool. And that says, "I understand

you, but I have trouble speaking." And so there were some

really cool ways that she was able to show this person, you

know, how they can use it as a communication tool. When

we're talking about communication, you know, there's light

tech, low tech, you know, nonvoice tools, simple voice

tools, anything less than $1,500. And I actually pulled

this from Libby Rush and Mary Joan McClure. So I want to

give them credit for that.

And I'm seeing that we have a comment up here. So

I'm going to let Liz read that.

LIZ PERSAUD: Donald just asked if he could get a

copy of the slides. He said this is great information.

Thank you, Donald.

And Martha responded and said that we'll have the

slides up in a couple of days on our website. And you can

also e-mail me, Donald, at the e-mail address that Martha

typed in, and I can send that to you via e-mail.

CAROLYN PHILLIPS: Excellent. Very good. Thank

you.

So there are different examples when it comes to

light tech, low tech. So remember we're talking about,

with degenerative neurological disorders or disease

processes, that there's progression.

So I often start with the low tech, light tech.

But sometimes, depending on where they are in the process,

I might start with a high-tech solution. Or if we're at

the very end process, then we might go back to the low-tech

solution where it is a communication board that somebody

can actually look at.

There are nonvoice options, such as a pocketbook,

where you can actually put in little icons, that's little

pieces of paper, that represent different things or

pictures or words. You can use that.

You could also use Velcro. And I've actually done

this where I Velcroed communication all in somebody's car

because that's where they were having a tough time

communicating with people. And they used it everywhere.

Or in the shower or what have you, which great.

Lingraphica is that technology that I was talking

about before that Mira was showing our friend. And once

again, this is very cool. You can get it for free. I'd

encourage you to download it. And it has speech output,

and it's got icons, and it actually says very simple

things. It is limited, but it's a really good piece of

technology that we ought to consider.

And then there's also a program out there called

Proloquo2go. Martha and I have downloaded this. My

daughter is using it. I was talking with Deb Chrislip

[phonetic] over at Scottish Rite yesterday over at

Children's Health Care about Proloquo2go.

So we're still evaluating this, but I wanted to

make sure that you were aware that this is out there. You

can get it for under $200. And that is exciting. There

are some limitations, but it is exciting to see what's

coming out.

And then also this A 1,000 Words that Jennifer

Marden is creating. And I've been able to play with this

some. And once again, it's helping people that are having

a tough time communicating be able to communicate quickly

things that they want to say that may be important.

So this is a book that I've used to get some of

these ideas and information when it comes to the

communication. They have a whole chapter here on ALS that

is very helpful.

And then they also talk about some of those -- the

disease processes in more detail, but then they also talk

about some of the more permanent stable injuries that might

happen, a traumatic brain injury, spinal cord injury, what

have you. And also how you can use AAC, alternative

augmentative communication, with folks with dementia.

So I hope you found some of this helpful. I'm

going to turn this back over to Liz to walk us through some

of the last parts of our conversation with you today.

LIZ PERSAUD: So we thoroughly hope that you guys

have enjoyed this webinar and have learned something new

about assistive technology, DND, about software that's

available to assist folks with DND.

If you are interested and want to try some of this

equipment, you can go and visit your ATRC, assistive

technology resource center.

The best way to get in touch with your local ATRC

is to go to the Tools For Life home page, and the website

is www.gatfl.org. And I believe Martha -- I can hear her

typing away. She just typed that in.

If you go to the home page, there's a picture of

Georgia, and it says "Click Here For Your Local Assistive

Technology Resource Center." You can go there and then

find the local ATRC that works for you.

Feel free to visit them, give them a call, set up

an appointment that you can try out many of these pieces of

AT and software.

You can also get in touch with Carolyn, myself, and

also with Martha. Our e-mail addresses are our first names

at gatfl.org. So liz@gatfl.org, Carolyn, and Martha. And

I believe Martha is typing that in right now as well, too,

so y'all can get in touch with us.

The next slide that we have are just some

resources. And again, we can share this PowerPoint with

anyone. And we've mentioned this throughout our talk.

Just websites to some of the different organizations of

some of the disorders that we've talked about. So

Huntington's Disease Society, the ALS Society, MS Society.

The Job Accommodation Network. Great information

about accommodations within the workplace. AT act programs

across the country: RESNA; Tools For Life website; Georgia

Project For Assistive Technology -- they work with folks in

the school system; and then the Center For Assistive

Technology and Environmental Access, CATEA, over at Georgia

Tech doing some great innovative things and research with

assistive technology.

CAROLYN PHILLIPS: And we wanted to see if you had

any questions. So if you have any questions, as we said,

you can contact us after this or you can ask us now. We're

open to answering any questions that you may have. So feel

free to go ahead and type those into the public chat. And

I appreciate some of you asking questions throughout.

As I said, we really do hope that this was

something that was informative, something that you can use.

Thank you, Ann. I appreciate that with a big

smiley face. "You're awesome."

So do you mind talking a little bit about the

evaluation process?

LIZ PERSAUD: This is a link to our evaluation for

this webinar, for the Tools For Life webinar. Help us

improve. We want your feedback. We want to be able to

provide more of these webinars. We want to hear topics

that y'all are interested in.

What did you like? What didn't you like? Give us

any and every feedback that you have so we can really

improve the information that we're sharing with y'all.

Carolyn is putting the link up in the chat box.

And again, you should be able to click right on this link

here. It takes you over to SurveyMonkey right to our

evaluation. It shouldn't take you more than five minutes

to fill it out. And then we'll get all that information

and compile it.

It's also very helpful for us for CRCs too. So if

y'all are appreciating and really like the fact that we

offer credit CEUs and CRCs, please fill out this

evaluation. That helps us to relay that information back

to the CRC powers that be.

If you did not put in your name and your

organization, where you're from, in the chat-box area,

please go ahead and do so. Again, that is important for us

for providing CRCs. We need to get the information back so

y'all can get your credits.

So just want to say thank you all so much. This

has been a great turnout of folks. It looks like we had

over 30 people on this webinar. We really appreciate y'all

taking time to be with us. Hope this information was

helpful.

Again, if you have any questions or any comments,

feel free to type them in. We'll stick around for just a

few minutes. Feel free to e-mail us if you have any

information. Feel free to e-mail me if you've got

information about credits, as well, too. And then we'll

throw up our contact information again.

So thank you all one more time for joining us.

We also have a schedule of our webinars that are

coming up. So feel free to jump on the Tools For Life

website. We have one coming up in mid-September focused on

assistive technology for individuals with hearing loss,

deaf, and late-deafened, as well, too.

And then there was a question here from Doris that

says, "Are there funding resources specific to DND?"

I'll tackle that first and then point that to you,

Carolyn.

Oftentimes you can find it within some overarching

organizations. So, for example, within Muscular Dystrophy

Association, I know that they provide X amount of money

every year for communication devices, for numerous

different things.

ALS, they actually provide communication devices I

think for free now to folks that need it within the MS

Society, Multiple Sclerosis Society. There's actually a

certain amount of money that they can give to folks as well

too.

We also have on our website a great guide called

the Dollars & Sense Funding Guide. Rhonda Perling, who is

on our team, is our funding specialist. And she maintains

the Dollars & Sense Funding Guide.

If you go to our home page, you can click on the

icon that says "Dollars & Sense Funding Guide," and what

that is is really a database that allows you to search for

different funding organizations, different funding

opportunities out there that can assist with purchasing

assistive technology.

And you can also get in touch with Rhonda directly.

She's great at working with folks to toggle resources. So

maybe using some funding from a specific resource and then

one from maybe another organization, as well, too.

And thank you, Martha, for putting that information

in for us.

CAROLYN PHILLIPS: Yes. And that is a great

question. Thank you for asking that, Doris.

The thing is that a lot of states have actually got

different things set up. So it depends also, if you are

working with folks from other states, then you can find

different resources.

For example, in I think it's North Dakota they have

a funding resource that's actually for -- that the state

legislators have actually developed, and it's huge. It's

like a million dollars for assistive technology for folks

with neurodegenerative diseases because they realize that a

lot of it -- people don't have time to wait.

And that's one of the things that we keep stressing

to folks is that, within this community, our community,

time is of the essence. We're talking three to five years.

Or we're talking, you know, a very short amount of time.

We also use the loan libraries a lot and reused

equipment a lot because a lot of times, as we talked about

before, you have to think about progression.

So if we were to keep everything that my mom used,

our house would be full of assistive technology. But what

we were able to do is borrow some things and then give some

to other folks who were maybe at the beginning stages of

Huntington's or at the beginning stage of another disease

process, and then they were able to use the technology, and

then we used something later.

So using your loan closets, using any place that

reuses equipment, and just making sure that it's the right

match.

Hope that answered your question. Did we answer

your question, Doris? Okay.

And, Patty, you want the survey link. We can

definitely paste that up there.

Any other questions? Anything else that y'all

would like to discuss with Liz or with me?

LIZ PERSAUD: Thank you all again. Please feel

free to get in touch with us. And Carolyn is about to put

that survey link up there. So again, y'all please go there

and fill out the survey. It shouldn't take you long at

all. And we'll actually pull the slide up, and you should

be able to click on the slide too. And that way you can

give us information about how we can improve and how can we

offer more webinars for y'all as well too.

So thank you everyone. And you should be getting

your CRC verification forms within the next day or two.

I'll be e-mailing those out.

CAROLYN PHILLIPS: All right. Thank you. And it's

so nice to hear all the positive feedback already. Y'all

take care.

Please use this information and know that we, as a

team, Martha, Liz, me, Rhonda, Connie, the TFL network of

assistive technology resource centers and Credit-Able --

which is also another great resource; if somebody wants to

get a loan, they can go through Credit-Able -- Friends of

Disabled Adults and Children -- all of us are here to help.

So take care, and we look forward to talking with

you more.

LIZ PERSAUD: Gwen, I see your question about

someone listening with you. Just go ahead and type in

their name and where they're from in the chat box, and I

can put that in. They can also e-mail me as well too.

That's another way, liz@gatfl.org, and then I'll e-mail it

directly to them. So if they can actually e-mail me, that

would be great, and that way I'll have their e-mail

address.