ALS or Lou Gehrigs disease

2012-02-12T21:16:00.000-05:00

The author of this blog went Home to be with his Lord and Saviour in February 2011. This blog will no longer be updated.

(Posted by his wife Mary)

Living with A.L.S - part 1

2010-11-16T20:11:00.000-05:00

Living with A.L.S - part 2

2010-11-16T14:54:00.007-05:00

iving with A.L.S - part 2

Living With ALS – Sandy Stuban

2010-11-16T13:51:00.000-05:00

Living With ALS – Sandy Stuban

Living with A.L.S Peggy; since 2008

2010-11-11T12:01:00.002-05:00

SOLUTIONS TO ALS CHALLENGES 2010

2010-10-20T20:28:00.001-04:00

SOLUTIONS TO ALS CHALLENGES

The purpose of my blog is to be of some help to others who have the same or a similar disease.

It is already more than four years ago that I was diagnosed with ALS.

But first, let me tell you how the Lord has blessed me with a flood of blessings, most of which I did not expect to be able to witness. In the past years, we could experience the joys that four healthy grandchildren were born, our youngest daughter was married, we celebrated our 40th wedding anniversary, and that the Lord continues to provide new blessings every day.

The Lord has given me peace and contentment in my illness, trusting in His finished work on the cross, done for me! He also gives me joy and happiness each day.

The Lord is my source of strength, and if you too have ALS or some other terminal disease, you will be happy to know that there is a Saviour who can save you from your sins, pay your debt of sin for you, at no charge to you. His name is Jesus.

Can you live, and die in peace and face Him then, if you reject Him now?

Where can you find out how you can be saved and find happiness and peace, even now, during your illness, and after your death?

click here

The ALS journey is usually one of a rapid physical deterioration, leading to total paralysis and death. How wonderful it is not to have to make this journey alone, but to be cheered and sustained by my dear Lord and Saviour!

“Christ alone is our salvation—
Christ the rock on which we stand;
Other than this sure foundation,
Will be found but sinking sand.
Christ, His Cross and resurrection,
Is alone the sinner’s plea;
At the throne of God’s perfection,
Nothing else can set him free.
“We have all things, Christ possessing;
Life eternal, second birth;
Present pardon, peace, and blessing,
While we tarry here on earth;
And by faith’s anticipation,
Foretastes of the joy above,
Freely given us with salvation,
By the Father in His love.
“When we perfect joy shall enter,
‘Tis in Him our bliss will rise;
He’s the essence, soul, and centre,
Of the glory in the skies:
In redemption’s wondrous story,
From the Cross unto the Glory,
Jesus Christ is all in all.”

poem taken from article:
Peace with God through the blood of Jesus.
William Reid; London England, 1860
see link above

Obviously there is a difference in development of the disease for each person. Let me briefly outline my progression. My first problems were backpain and weakness in my arms followed by shortness of breath. Use of the BiPap started very soon after diagnosis, and rapidly increased to full time use within about 2 years. My BiPap settings are currently 16/6 with 14 breaths per minute minimum.

Today I can no longer stand or walk or sit in a regular chair. Basically I have reached a state of total paralysis with the following exceptions: I am able to eat and drink normally and chew my food. My speech has weakened substantially but is still quite audible. My neckmuscles have weakened so I need support to hold up my head. I can lift my arms a little bit and am still able to use my right hand enough to control the joystick on my wheelchair.

I am in my wheelchair all my waking hours. My wheelchair has adjustable power legrests, backrest and seat. Having these options allows me to adjust the chair many different ways so that I do not tire because I am not confined to one position.

On the wheelchair an extra battery has been mounted to supply independent power to my BiPap machine which hangs in a net off the back of my chair. This means that during the daytime I am never connected to an electrical outlet, and can take my wheelchair for a ride to the park or go shopping with my wife. Because we have a wheelchair accessible van we can basically go anywhere. My wife drives the van. My travel is limited by the fact that I need a lift to use the washroom facilities.

Since I need breathing support 24 hours a day I have a second BiPap machine beside my bed that is plugged into a regular outlet. For me the key factor in being able to use the machine all day and night is that I have several masks:

For daytime use I have a nasal mask that consists of two slender tubes going into my nose, providing air. This is not claustrophobic and allows me to speak, drink and eat without taking my mask off. (I can do no longer than approx. 1 minute without breathing support).
Here is a link to this mask: http://www.directhomemedical.com/masks-cpap-bipap/nasalaireii-nasal-cannula-mask-cpap-bipap.html

For nighttime use I have a Resmed Mirage Liberty mask: http://www.cpap.com/productpage/2513

and for the last week or so I have been trying out a new full face mask at night (Respironics Fit Life):
http://www.directhomemedical.com/masks-cpap-bipap/fitlife-fullface-cpap-mask-respironics-mylife.html

This mask takes a little bit of getting used to since it covers my whole face. The reason for considering this one is that the Resmed mask above often leaked at night and would set off my alarm on the BiPap. I did try other full face masks but the skin on the bridge of my nose would always break down.

I have a second machine available as a backup and an extra battery. I don't have any choice whether to use the BiPap or not so that I have resigned myself to having this beautiful thing on my head all hours of the day and night. All my friends and relatives are used to seeing me this way and would be shocked if it was not there.

As you will see below there are lots of problems to address when you have ALS. For the benefit of those who have ALS I provide a solution for each problem, and I am, below, also providing a list of my present equipment and its use.

TRANSPORTATION

WHEELCHAIR*

Some new developments have taken place. Since I can no longer use arms or legs nor independently sit up, I have a new wheelchair with power elevating leg supports as well as a power back and seat. It has been custom fitted, and is quite comfortable. I am in it all my waking hours. This chair allows me to change my position and so prevents my back from hurting and ankles from swelling. I have some remaining motion in my right hand, just enough to control the joystick of my wheelchair.

HANDICAPPED WHEELCHAIR ACCESSIBLE VAN

October 2008

We purchased a used (fully automatic) handicapped accessible van with a power ramp so that I can travel.

RAMP

I have a fold up eight foot metal ramp for use in accessing buildings with one or two steps.

COMMUNICATIONS

PRAYER

The Lord is my hope and comfort every day. He is good and I praise Him for His lovingkindness. He gives me peace and trust in Him because He has paid for my sin through His suffering on the cross for me, so that I may go free! He first loved me so that I love may love Him in return. He caries my burden so that every day is a joyful day, remembering His grace and mercy.

EYE GAZE CONTROLLED COMPUTER

Because I have difficulty typing, I now have a new Eye gaze computer (MyTobii system). In due time I will be able to type and run programs by gazing at a designated spot on the screen. The computer has no mouse or keyboard, and consists of a screen only. There is a learning curve to be able to efficiently use the system. I am training by playing tic-tac-toe and chess. The length of time you gaze at a certain spot determines if the action is performed. This time can be set to your preference. If you set it very short you will have more letters on your screen than you know what to do with, if you set it too long you will be gazing very long before finally the computer decides to react. You can have the computer speak any words you "type" so that you can alert your caregiver to your needs and respond to questions. The system will allow you to read and write e-mails, go on to the internet, look at photographs, read the news, in short, do almost everything I would normally do on my computer. Without a system such as this, in the case of total paralysis, it may be almost impossible to indicate to a caregiver, for instance, when my nose is itching.

SPEECH AMPLIFIER*

My condition continues to slowly deteriorate. I am thankful for the "slowly" part. My speech is also deteriorating, and I now have an amplifier to better project my voice.

HEADSET FOR PHONE

For phone calls I use headphones with a microphone since I can no longer dial calls or hold the phone.

CALL FOR ASSISTANCE AROUND THE HOUSE

I have a wireless doorbell system. I keep the pushbutton at my side in the wheelchair or in bed. The chime is portable and located in whatever area my wife is working (outside, basement, garage or main floor). This product is usually available at stores like Walmart.

FOR EMERGENCY TEXT COMPUTER VIA MSN TO CELL PHONE
When I need to communicate with Mary I use text messaging via MSN on my computer to her cellphone.

BREATHING

SUCTION MACHINE*

This machine helps clear my throat when required. It is battery operated.

COUGH ASSIST MACHINE

This is used to help me in coughing since my lungs do not produce enough pressure.

BI-PAP MACHINES

These are provided by the Ontario Ventilator Pool and are the main tool for keeping an ALS patient alive, since lung function usually deteriorates rapidly. I have two RESMED VPAP III ST-A units. Since I need breathing support 24/7, it is essential to have a second unit for back up in case one unit fails. We use one unit attached to my wheelchair and run from a battery so that I can travel anywhere without needing a hydro connection. These RESMED units are very efficient and use very little electricity. My battery will provide power to the unit for over 13 uninterrupted hours of use, which means I can travel virtually anywhere without needing a hydro connection. When I transfer to my bed I start using the second RESMED machine which is plugged into an electrical outlet. The machines have the capability of using either battery or hydro. These machines also come with a humidifier.

OTHER ASSISTIVE TOOLS AND DEVICES

NECK BRACE

My muscles in my neck are starting to fail. I can no longer turn my head to the left, so if you want to speak to me stand on my right. Because my head is dropping on my chest it becomes more difficult for my BIPAP breathing machine to pump air into my lungs and also my swallowing is restricted. Solution: recline my backrest and for eating wear a support collar to support my head. Wearing this, I can also breathe easier, since my chin is not on my chest.

HOSPITAL BED

This bed has movable top, middle and bottom sections controlled by an electrical hand held switch. For a patient who has ALS such a bed is essential to avoid bedsores etc. since it can be moved at will by yourself.

HOYER LIFT*

The lift is used, with a sling to move me out of my chair into bed, etc, since I can no longer stand.

SHOWER COMMODE

This is an essential piece of equipment and I use it for showering every day.

EMERGENCY POWER SUPPLY*

I have a heavy duty battery on stand by at all times. This battery can be used when there is power failure (thunderstorms). To the battery is connected a power converter to 110 AC so that a very quick switch can be made by moving the power cord from the electrical outlet to the converter. Another back up is the battery attached to my wheelchair. Together they provide 26 hours of power in the event of a hydro failure.

*CHARGERS
Since most tools above are battery operated, all these batteries have to be recharged (mostly) overnight.

3 Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, 5 who are kept by the power of God through faith for salvation ready to be revealed in the last time. 6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, 9 receiving the end of your faith--the salvation of your souls.

NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease - Gary Schwitzer's HealthNewsReview Blog

2010-10-19T10:29:00.003-04:00

NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease - Gary Schwitzer's HealthNewsReview Blog:

This was one time when the headline was OK, but the story that followed had our heads spinning. "Study Says Brain Trauma Can Mimic Lou Gehrig's Disease" is a story that was troubling on a number of fronts. It reported on a study which at the time had not yet been published suggesting that some "athletes and soldiers given a diagnosis of amyotrophic lateral sclerosis...might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma."
To be clear - and please don't anyone miss or misconstrue this point - this is an important and fascinating area of research.
But the story did not exhibit the best of health/medical/science journalism.

1. It was based on a study of 3 people. (The ALS Association says there are up to 30,000 people in the US living with ALS.)
2. It stated, "Lou Gehrig might not have had Lou Gehrig's disease." (No evidence for this was provided. He also may not have been a great left-handed hitter. That may have been an optical illusion.)
3. It said this could "perhaps lead toward new pathways for a cure." (After a suggestive finding in just three people?)
4. The story later says, "The finding's relevance to Gehrig is less clear." (Hedging already after a bold earlier statement in the story.)
5. But just a few paragraphs later, the story says, "The new finding...suggests that Gehrig might not have had (ALS)." (Head spinning yet?)
5. The story dropped lots of big names - Gehrig, Stephen Hawking, Michael J. Fox, former NFL players Wally Hilgenberg and Eric Scoggins, Cal Ripken - in a jumble of claims, associations - or was it just plain name-dropping in order to make the story more appealing?
6. The story brought in "recent epidemiological studies" in soccer players and soldiers without one word about the possible limitations of such studies.
7. It went into detail that a historian or sports nut would love about Gehrig's football concussions or baseball beanings or fights with Ty Cobb. But all of this just fed the theory that was not supported by anything but guesswork and innuendo.

The story ends with a quote from a Gehrig biographer:

"Lou Gehrig wanted to know everything possible about his own illness -- he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease. He wouldn't stick in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others."

As we said earlier, this is important and fascinating research. So we don't think anyone should stick their head in the sand over this research either. But the story also didn't require any hype - the kind it received from the NYT.
Additional thoughts from Dr. Steven Atlas of Massachusetts General Hospital, one of our medical editors:

"This represents a small and interesting case series. The lowest rung on the clinical evidence ladder. It is a pretty big stretch to imply that Lou Gehrig may not have had ALS. To imply that one would need to know how common this is. One line of evidence is that NFL players may be more likely to be diagnosed with ALS than the general public. But it is also possible that given their occupational history, one may look for it more carefully. Another way would be to do a case control study. One could take individuals diagnosed with ALS and maybe age and sex matched controls to see if there is a history of prior brain trauma. For pathologists, one method would be to work to do postmortem exams on more patients with ALS to see if they had the pathological changes of ALS or recurrent brain trauma. One could independently get history of prior brain trauma to see if history and pathology line up. The bottom line as you mention is that this is an intriguing study. It is doubtful that such a study may lead to a "cure" unless one means that we seek to decrease brain trauma in the first place. As the article mentions well into it, we won't know whether Gehrig has ALS or not, but one can't help but surmise that he did have ALS until data shows that much of ALS is in fact a side effect of brain trauma. Finally, even if brain trauma is associated, it is possible that genetic factors that would lead to ALS are present in these individuals with brain trauma. Specifically, is it the severity of the brain trauma that predicts this? Or is it the genetics that dominate and the trauma is the straw that broke the camels back?"

Complexities that, despite the long word count, this story didn't address.

Veterans with Lou Gehrig's to get benefits - CTV News

2010-10-18T13:53:00.002-04:00

Veterans with Lou Gehrig's to get benefits - CTV News:

The federal government announced Friday it would speed up support for Canadian veterans suffering from Lou Gehrig's disease, also called amyotrophic lateral sclerosis (ALS).

Veterans Affairs Minister Jean-Pierre Blackburn said in his announcement that "based on the latest medical research, our government has made changes so that veterans affected by ALS obtain the help and support they need and deserve faster than ever before."

He said the government has broadened the criteria to allow the ministry to accept applications for benefits from vets with ALS.

"I will also make the commitment to you in front of me today that these applications will be processed very quickly. Decisions will be rendered immediately," Blackburn said.
Veterans will now be able to receive disability benefits, treatments and home care support for their ALS, so that they can receive such things as adapted wheelchairs, medical resources, and housekeeping services.

Blackburn says it was the story of Gulf War veteran Brian Dyck, who publicly fought with the government for benefits for veterans with ALS, that led to the changes announced Friday.
Dyck died last Friday at age 42 after battling ALS for just over a year.

"Never again do I want to hear of a veteran with ALS who has expended his last ounces of energy fighting for the help he deserves," Blackburn told reporters.

David Cameron, president and CEO of the ALS Society of Canada, applauded Friday's announcement, noting that because of the progressive nature of ALS, some veterans were dying before their applications to Veterans Affairs Canada were processed.
ALS, or Lou Gehrig's disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord; about 80 per cent of those diagnosed die within two to five years.
Some research has suggested that war veterans have higher-than-usual rates of ALS. Three studies released in recent years have shown higher incidences of ALS among veterans of the 1990-91 Gulf War, though other studies have not found such a link.
Some of the authors of those studies called for more research to confirm the cause of any possible link, including chemicals, brain injuries, or other substances or activities.

Common Webcams Could Be Used to Continuously Monitor Your Vital Signs | Popular Science

2010-10-04T15:40:00.003-04:00

By Clay Dillow

Mirror Mirror on the Wall

A new technology coming out of the Harvard-MIT Health Sciences and Technology program uses low-res cameras like those used in Web cams to measure vital signs, opening the door to around-the-clock monitoring of a person's most fundamental health indicators.

That first early-morning look in the mirror may soon tell you a lot more about your state of being beyond the simple fact that you look like you could use another hour of sleep. A grad student in the Harvard-MIT Health Sciences and Technology program has figured out how to use low-cost, low-resolution off-the-shelf camera technology to measure a person’s heart rate through imaging alone. The technology, which could soon also be measuring respiration rates and blood-oxygen levels as well as blood pressure, could make basic medical monitoring a continuous process throughout the day.

The system requires nothing but a low-resolution video camera like the one built into most laptop computers. Software identifies a subject’s face in the image and uses variations in brightness resulting from the flow of blood through blood vessels in the face to measure pulse rate. Tested against a physical sensor, the system was found to be accurate to within about three beats per minute. Ming-Zher Poh, the grad student behind the system, is now working on methods to extract other vital data via video image.
The ability to test for vital signs through a Web cam opens the door to all kinds of applications, most obviously in telemedicine. Rather than leaving the house when you’re feeling under the weather, you could simply sit down with a nurse via video chat and he or she could take your vitals and determine the best course of action. The non-invasive nature of the tech also makes it ideal for situations where a patient really shouldn’t be touched more than is absolutely necessary, like to monitor the vitals of a prematurely born infant or a burn victim.

But the more interesting aspect of the technology is it’s ability to be ever-present in our lives. Poh has already created a mirror with a camera embedded into it that displays a person’s pulse on the glass itself. Such a mirror could take a vital snapshot of a person each morning when he or she rises and again in the evening, creating a health profile rich in data that we usually only get when we go into the doctor’s office. Those who need more careful monitoring could use their computers or phones to monitor their vitals continuously throughout the day.
All that data could be continuously piped to health care providers in real time, allowing our doctors to get a far more complete picture of how our bodies are doing on a day-to-day basis. That could lead to better preventative care, fewer trips to the doctor, and reduced man hours spent sitting in waiting rooms. For health care systems the world over that are flat-lining because of uncontrolled rising costs, that’s a favorable prognosis.

Panasonic's Robotic Bed Transforms into a Mobile Chair, Makes Standing Up Obsolete | Popular Science

2010-10-01T19:55:00.001-04:00

Panasonic's Robotic Bed Transforms into a Mobile Chair, Makes Standing Up Obsolete | Popular Science: "-

Robo-Bed It will do everything but fix your bed hair. Panasonic

Mobility-impaired patients and layabouts alike can rejoice at the debut of Panasonic's robotic bed that transforms into a wheelchair. Human nurses and hospitals may also breathe a tiny sigh of relief.

The bed-shaped bot morphs upon command to sidestep the usual trouble of moving a bedridden person from bed to wheelchair, or vice versa. Yet unlike the Japanese bear bot nurse that carries patients, a self-controlled bed bot allows humans to regain some independence and dignity.

Comfort and ease of use play a big role in this bot's appeal. Robotic Bed includes posture support with a mattress that adjusts to the person's body, and can help users turn over and avoid bedsores. The wheelchair detaches itself automatically from the rest of the bed, and even detects people or obstacles in its path.

But that's not all. A Robotic Canopy interface permits users to watch television, operate home appliances, and even check the security camera network. "Wall-E" fans may get a kick (or shiver) out of that.

Harper vows action for vets with ALS

2010-09-17T20:46:00.002-04:00

Harper vows action for vets with ALS: "OTTAWA — Prime Minister Stephen Harper is pledging to provide help to Canadian war veterans fighting a deadly disease after Global News reported this week on the plight of former soldiers afflicted with Amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) but who are blocked from receiving medical benefits.

“We’re aware of some concerns on how veterans who have ALS may be handled and I’ve certainly been insisting our officials look into how we can fix some people’s problems,” Harper said.

“So you’re going to see some action on that in the not-too-distant future.”

Harper has instructed Veterans Affairs to address the difficulties for veterans with ALS. While it is unclear exactly what that means, it is understood the goal is to eliminate the lengthy court battles caused by this case-by-case rule.

Harper was responding to the plight of veterans such as 42-year-old Brian Dyck, whose disease has progressed so rapidly he’s not sure how much longer he’ll live.

“During the quiet times, I definitely shed a few tears,” Dyck said. “It’s hard.”

His claim to Veterans Affairs was denied even though research in the United States has found soldiers are 60 per cent more likely to die of ALS than civilians, and those who served in the first Gulf War — as Dyck did — increase their chances even more.

For the past two years, U.S. veterans have been covered by a regulation that presumes a link between the disease and military service.

In Canada, assessments are done on a case-by-case basis.

Dyck appealed last week and is expecting another ruling soon.

Dyck and his wife, Natali, were overjoyed by news of the prime minister’s pledge.

“We were overwhelmed with emotion and both started to cry,” said Natali.

Read more: http://www.montrealgazette.com/health/Harper+vows+action+vets+with/3541839/story.html#ixzz0zq12KZ57

Researchers Translate Thoughts into Speech, Potentially Allowing "Locked-In" Patients to Communicate | Popular Science

2010-09-07T20:42:00.001-04:00

Researchers Translate Thoughts into Speech, Potentially Allowing "Locked-In" Patients to Communicate | Popular Science: "- Sent using Google Toolbar"

By measuring the electrical signals made in certain parts of the brain when its thinking of certain words, researchers could create a means to translate thoughts into speech.

In an effort to unlock the speech capacity in patients who cannot speak because of so-called “locked-in syndrome,” University of Utah researchers have successfully demonstrated that they can translate brain signals into words using electrode grids placed beneath the skull. Sort of.

The method leaves a lot of room for improvement, but it does prove out some technology that could make thought-to-speech technology more reliable for patients suffering from traumatic brain injuries or illnesses that render them unable to communicate with others. Using two grids of 16 microelectrodes placed over two regions of the brain known to generate human speech, the team was able to record brain signals for 10 useful words – yes, no, hot, cold, thirsty, hungry, goodbye, hello, more and less – and use that data to discern between any two words a patient was thinking between 76 and 90 percent of the time.

But when they tried to distinguish between all ten words at the same time, that success rate dropped to between 28 percent and 48 percent. That’s better than chance – which would be one-in-ten or just 10 percent – but less than reasonably useful.

The electrodes used were non-penetrating, meaning they sit between the patient’s brain and skull, but do not actually poke into the brain. That means they are closer and more sensitive to specific brain waves than externally worn EEG caps, but are less invasive than penetrating electrodes. These electrodes can pick up on weak electrical signals within the brain, meaning they are more nuanced than other brain monitoring sensors and could possibly provide the technological sensitivity needed to get reliable thought-to-speech translation working.

But first the researchers will have to refine their translation techniques to raise the success rates from one-in-four to something more like three-in-four, and ideally be able to distinguish between more than just 10 words. To get to that point, the next round of tests will involve larger, 11-by-11 arrays containing 121 electrodes each. Those larger implants should yield much more brain signal data that could in turn improve translation accuracy to the point that thought-to-speech translation could become a viable clinical solution.

Links to ALS information

2010-08-18T17:27:00.006-04:00

INSTITUTIONS / ORGANIZATIONS
ALS Society of Canada

ALS Society of Ontario

Rilutek® - The ALS Association

HOSPITALS / CLINICS
Amyotrophic lateral sclerosis - Loma Linda University Medical Center

FTD ALS Conference - Clinical Neurological Sciences - London Ontario Canada - FtdAlsConference.ca

RESOURCES
Amyotrophic Lateral Sclerosis: A ... - Google Books

Support for Caregivers and Persons with ALS/MND

ALS: From Both Sides

ALS-Caregivers-Guide.pdf (application/pdf Object)

http://alsorlou.blogspot.com/

ALS BLOGS

A dying doctor savors simple joys and crosses off his final '100 things' - Medical News - sacbee.com

Rob Toren: A Great Journey Despite Lou Gehrig's Disease (ALS): August 2007

Living with ALS, The Attic

http://www.caringbridge.org/visit/christianadjemian1

http://www.als.ca/events/mysite.aspx?fid=5095

Lou Gehrig may not have had Lou Gehrig’s disease

2010-08-17T21:05:00.002-04:00

Lou Gehrig may not have had Lou Gehrig’s disease - Need to know - Macleans.ca

Brain trauma results in motor-neuron degeneration, and that the resulting disease may not be ALS

According to a peer-reviewed paper to be published tomorrow in the Journal of Neuropathology & Experimental Neurology, Lou Gehrig might not have had Lou Gehrig’s disease after all. The paper suggests Gehrig’s demise—and that of some other athletes and soldiers given a diagnosis of Lou Gehrig’s disease—may have a different fatal disease caused by concussion-like trauma which erodes the central nervous system in ways similar to Lou Gehrig’s. These findings may lead to a redirection in the study of motor degeneration in athletes and military veterans, who are diagnosed with ALS at rates that are higher than normal. The finding’s relevance to Gehrig is less clear, but it’s possible the Yankee legend’s commitment to playing through injuries like concussions could have led to his condition.

Wheelchair can Automatically Follow A Human

2010-08-12T16:18:00.002-04:00

Saitama University's Robotic Wheelchair

Japanese researchers, never at a loss for concepts mashing up domestic and medical care with the best in robotics, has developed a robotic wheelchair that automatically follows a human companion.

Born of Saitama University's Human-Robot Interaction Center, the wheelchair employs a distance sensor that tracks the position of a companion person, keeping the wheelchair always at the person's left. It also tracks the position of the companion's shoulders, anticipating where that person is moving next. Even if the companion stand in place and simply rotates, the chair will circle around to remain abreast of the companion.
Unless, that is, the corridor narrows or other foot traffic is approaching or there is an obstacle or a narrow corridor. The wheelchair makes decisions about upcoming terrain and objects, avoiding obstacles and dropping into single file if the passage ahead is too narrow or there are lots of people approaching from the opposite direction.

The 'bot is aimed at helping care workers in facilities move elderly folks around more efficiently -- more than one wheelchair can follow a single companion at the same time -- and to allow better interaction between the person in the chair and the companion. After all, it's touch to keep a conversation going when you're always walking one behind the other.

Voice recognition

2010-08-03T11:53:00.001-04:00

Text that is as good as your word

By Paul Taylor
Published: July 29 2010 22:08 | Last updated: July 29 2010 22:08

Voice recognition software, which converts live speech or digital recordings to text, usually ranks with desktop videoconferencing and optical character recognition as technologies that have never lived up to expectations.

Early packages were too clumsy, inaccurate or needed too much “training”, in which the user gets the program accustomed to a particular voice, to make them practical outside specialist niches such as law firms and healthcare. They also required more powerful PCs and better headsets than many people owned. Those failings, followed by the inclusion of basic speech recognition technology in Microsoft’s Windows operating system, led to a shake-out in the consumer sector and the eventual emergence of Nuance’s Dragon NaturallySpeaking program as the market leader for Windows-based PCs (Nuance’s technology is also available for Mac users, under the MacSpeech Dictate package).

Dragon NaturallySpeaking 1.0 was launched in April 1997, the first package to be able to cope with natural, or continuous, speech rather than a staccato version in which each word must be enunciated separately.

I have been testing the latest version, Dragon NaturallySpeaking 11 Premium, which went on sale yesterday. It has three main versions: Home, Premium and Professional, starting at $99 (£80 in the UK) for the Home version.

Nuance claims the latest version is more accurate, faster and easier to use than its predecessors. It also claims the program enables users to use speech to perform almost any task on the computer – create documents, send e-mails, surf the web, search Facebook and Twitter and interact with applications at speeds up to three times faster than if you had to type the commands.

In my tests, these claims were justified. Nevertheless, the product is just one more tool, alongside the keyboard, touchpad, mouse and other input devices.

That said, the latest version of Dragon NaturallySpeaking removes several of the remaining barriers to the adoption of voice recognition technology for controlling a PC and dictating text into office productivity applications, such as Microsoft Word, e-mail packages and internet browsers. It is easy to install, fast, reliable and accurate and, best of all, if you take just a little time on “training” the software to recognise your voice, it is much faster than typing.

For users who are familiar with earlier versions of Dragon NaturallySpeaking, the most noticeable difference are: the new user interface with the context-sensitive Dragon Sidebar, which helps users discover and remember commands and tips; a new Help system; and an updated toolbar that helps users discover and access important but often overlooked Dragon features quickly.

I set up Dragon NaturallySpeaking Premium, which costs $200 (£150), on a Toshiba Portégé R700-S1331 laptop – reviewed last week – and on an older Lenovo ThinkPad X300.

Installation on both was smooth and took less than 10 minutes, including setting up a personal profile and a short dictation session to train the software. You can skip this training session but it really is worth doing.

The set-up procedure also involves the automatic calibration of the Plantronics headset that came with my software. I was able to open a new Word document and immediately start dictating a letter that turned out surprisingly accurate. Of course, the software still struggles with proper names and obscure technical terms – in my case, the stumbling block was when I dictated “eSata” (a type of hard drive interface), it came out as “E Satter’ (see screen shot above). But errors are easy to correct and the software learns from its mistakes, so once I had corrected the spelling, it came out right after that.

Nuance says Dragon NaturallySpeaking 11 is 15 per cent more accurate than the previous version, thanks partly to technology from a new partnership with IBM, another speech recognition pioneer.

Dragon NaturallySpeaking 11 works with most versions of Microsoft Word, including Word 2010 as well as OpenOffice Writer, WordPerfect and WordPad, the basic word processing package included with Windows. It also supports natural language – ordinary speech – commands in the new Office 2010 suite.

Equally important, Dragon NaturallySpeaking 11 is faster than previous versions for controlling other common PC-based operations, such as sending e-mail or searching the web using either Internet Explorer or Firefox.

It collapses many of the tasks that usually take an annoying number of clicks and keystrokes into simple voice commands. For example, you can ask your PC to search Amazon for a particular book, send an e-mail to a friend, search maps for an address, or open a folder. I also used it to search Facebook and to use Gmail.

Most of the time, both my PCs responded quickly and accurately to commands, although I did notice the speed slowed a lot if another resource-hungry application, such as reformatting a video file, was going on in the background.
The Sidebar was a particularly useful new feature.

Another interesting new feature is the ability to turn digital voice recordings into text. Once again, I achieved better results by taking time at the outset to create a new user profile and training it for use with a digital recorder by making corrections. Then, Dragon NaturallySpeaking 11 successfully and mostly accurately transcribed notes I dictated into an Olympus machine and then connected to the PC.

Unfortunately, I found the accuracy declined dramatically if I asked the software to transcribe an interview with another person – that is, with more than one voice. Nevertheless, this feature could be very useful for doctors, lawyers and others who regularly dictate notes.

Overall, Dragon NaturallySpeaking 11 is a welcome advance in both voice recognition and voice control of a PC. It is not for everyone – for example, there are some places that are too noisy, too public and where silence is mandatory to use voice commands. But voice is gradually becoming a viable alternative to more traditional input devices.

'Sniff Detector' Lets Those Lacking Mobility Drive a Wheelchair With Their Noses

2010-07-29T19:51:00.000-04:00

By Clay Dillow

The Sniff Detector By turning nasal pressure into electrical signals, the sniff detector lets those with "locked-in" syndrome communicate and paraplegics operate an electric wheelchair. PNAS

Israeli researchers have sniffed out what could become a way to give paraplegics and those suffering from "locked-in" syndrome a means to communicate with the outside world and even drive a wheelchair using their noses.

Using a device that converts nasal pressure into electrical signals, the team has successfully enabled locked-in patients to write messages independent of stimulus and allowed paraplegics to effectively navigate an electric wheelchair.
The "sniff controller," as it is known, is worn externally via a rubber tube not unlike the ones often used in hospitals for patients who need oxygen. The nasal device is not universal, as about a quarter of all people in a healthy control group were found to have insufficient volitional control over their soft palate, the part of your nasal passageway that lets you regulate the strength of your sniffs. But for those with sufficient soft palate control, the sniff controller gave test subjects a new degree of freedom.
The researchers started with a group of 36 healthy individuals on whom they tested the response time and precision with which humans can control their nasal pressure on a video game system that also measured their ability to with a mouse and a joystick. The team found that nasal control was just as reliable as mouse and joystick proficiency in those subject deemed to have good volitional control of their soft palates.

Encouraged, the team moved on to three patients suffering from "locked-in" syndrome, which allowed them to communicate using only their blinking eyes. Two of the three quickly learned to use a letter-choosing and word completion program that allowed them to initiate communication and expression (the third subject didn't take to the controller, though its unclear if the issue is soft palate-related or due to some other influence).

The team also created an interface for controlling an electric wheelchair using the sniff detector (two successive sniffs in = forward, two successive sniffs out = backward, etc.) and tested it on ten healthy patients. Again, they found that after a bit of practice the control group could easily navigate the wheelchair, so they put a man paralyzed from the neck down in the driver's seat. To their amazement, they found that after just 15 minutes a paraplegic can become quite skilled at navigating a wheelchair using the sniff detector.

Obviously these tests were conducted on a small group and further study and refinement is needed. But for those suffering from ailments that have denied them their mobility or their capacity to communicate, the sniff controller could provide a means for operating all kinds of devices that could improve quality of life.

Inhale, exhale and move forward

2010-07-28T11:11:00.001-04:00

Photo by: Weizmann Institute

Inhale, exhale and move forward

By JUDY SIEGEL-ITZKOVICH
07/28/2010 03:28

New invention enables quadriplegics to maneuver.

Talkbacks (2)

Quadriplegics like England’s Prof. Stephen Hawking who have difficulty even pressing buttons or moving a joystick will be able to navigate their wheelchairs and communicate with others more easily by inhaling or exhaling through the nose at a sniffing device invented at the Weizmann Institute of Science.

Prof. Noam Sobel, electronics engineers Dr. Anton Plotkin and Aharon Weissbrod, and research student Lee Sela developed the technology in the Rehovot institute’s neurobiology department, which announced the achievement on Tuesday.

The unique device could replace the more tedious technology of blinking one’s eyelids to choose letters and piece together words, use a computer or steer an electric wheelchair.

Sniffing technology, said the developers, might even be used in the future to create a sort of “third hand,” to assist healthy surgeons or pilots.

The new system identifies changes in air pressure inside the nostrils and translates these into electrical signals. After the device was tested on both healthy volunteers and quadriplegics, the results showed that the method is easily mastered.

Users were able to navigate a wheelchair around a complex path or play a computer game with nearly the speed and accuracy of a mouse or joystick.

“The most stirring tests were those we did with locked-in syndrome patients,” said Sobel.

“These are people with unimpaired cognitive function who are completely paralyzed – ‘locked into’ – their bodies.

With the new system, they were able to communicate with family members,and even initiate communication with the outside world. Some wrote poignant messages to their loved ones, sharing with them – for the first time in a very long time – their thoughts and feelings.”

Four of those who participated in the experiments are already using the new writing system, and the Weizmann Institute’s technology transfer arm, Yeda Research and Development Company, Ltd., is investigating the possibilities for developing and distributing the technology.

Sniffing is a precise motor skill that is controlled, in part, by the soft palate – the flexible divider that moves to direct air in or out through the mouth or nose. The soft palate is controlled by several nerves that connect to it directly through the skull. This close link led Sobel and his scientific team to theorize that the ability to sniff – that is, to control soft palate movement – might be preserved even in the most acute cases of paralysis.

Functional magnetic resonance imaging (fMRI) provided evidence behind the idea, showing that a number of brain areas contribute to softpalate control. This imaging revealed a significant overlap between soft palate control and the language areas of the brain, hinting to the scientists that the use of sniffing to communicate might be learned intuitively.

To test their theory, the researchers created a device with a sensor that fits on the nostril’s opening and measures changes in air pressure. For patients on respirators, they developed a different version of the device, which diverts airflow to the patient’s nostrils.

About three-quarters of the subjects on respirators were able to control their soft-palate movement to operate the device.

Initial tests, carried out with healthy volunteers, demonstrated that the device compared favorably with a mouse or joystick for playing computer games. In the next stage, carried out in collaboration with Prof. Nachum Soroker of Loewenstein Hospital Rehabilitation Center in Ra’anana, quadriplegics and locked-in patients tested the device.

One patient who had been locked in for seven months following a stroke learned to use the device over a period of several days, writing her first message to her family. Another, who had been locked in since a traffic accident 18 years earlier, wrote that the new device was much easier to use than one based on blinking. Another 10 quadriplegics succeeded in operating a computer and writing messages via sniffing.

The device can also function as a sort of steering mechanism for wheelchairs: Two successive sniffs in tell it to go forward, two out mean reverse, out and then in turn it left, and in and out turn it right. After 15 minutes of practice, a subject who is paralyzed from the neck down managed to navigate a wheelchair through a complex route – sharp turns and all.

Sniffs can be in or out, strong or shallow, long or short; and this gives the device’s developers the opportunity to create a complex “language” with multiple signals.

The new system is relatively inexpensive to produce, Sobel suggests, and simple and quick to learn to operate in comparison with other brainmachine interfaces.

Inhale, exhale and move forward

General Information about the Disease

2010-07-16T11:40:00.000-04:00

Amyotrophic lateral sclerosis

Definition

Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement.

ALS is also known as Lou Gehrig's disease.

Alternative Names

Lou Gehrig's disease; ALS; Upper and lower motor neuron disease; Motor neuron disease

Causes

In about 10% of cases, ALS is caused by a genetic defect. In other cases, the cause is unknown.

In ALS, nerve cells (neurons) waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one's own.

ALS affects approximately 1 out of every 100,000 people.

Except for having a family member who has a hereditary form of the disease, there are no known risk factors.

Symptoms

Symptoms usually do not develop until after age 50. Persons with ALS have a loss of muscle strength and coordination that eventually gets worse. This eventually makes one unable to do routine tasks such as going up steps, getting out of a chair, or swallowing.

Breathing or swallowing muscles may be the first muscles affected. As the disease gets worse, more muscle groups develop problems.

ALS does not affect the senses (sight, smell, taste, hearing, touch), bladder or bowel function, or a person's ability to think or reason.

Symptoms include:

Difficulty breathing
Difficulty swallowing
- Gagging
- Chokes easily
Head drop due to weak spinal and neck muscles
Muscle cramps
Muscle weakness that slowly gets worse
- Commonly involves one part of the body first, such as the arm or hand
- Eventually leads to difficulty lifting, climbing stairs, and walking
Paralysis
Speech problems, such as a slow or abnormal speech pattern
Voice changes, hoarseness

Additional symptoms that may be associated with this disease:

Drooling
Muscle contractions
Muscle spasms
Ankle, feet, and leg swelling
Weight loss

Exams and Tests

An exam of the nerves and muscles shows weakness, often beginning in one area. There may be muscle tremors, spasms, twitching, or loss of muscle tissue (atrophy). Atrophy and twitching of the tongue are common.

The person's walk may be stiff or clumsy. Reflexes may be abnormal and may include loss of the gag reflex. Some patients have trouble controlling crying or laughing. This is sometimes called "emotional incontinence."

Tests that may be done include:

Blood tests to rule out other conditions
Breathing test to see if lung muscles are affected
EMG to see which nerves do not work properly
Genetic testing, if there is a family history of ALS
Head CT or MRI of head to rule out other conditions
Swallowing studies
Spinal tap (lumbar puncture)

CELIAC DISEASE can mimic ALS symptoms:
In this Case Study, the patient's initial presentation consisted of a progressive motor syndrome in the absence of sensory signs, with clinical evidence of upper and lower motor neuron degeneration, electromyographic evidence of widespread acute denervation, and hyperintensity in the corticospinal tracts revealed by MRI. In view of these findings, while acknowledging the unusual hemiparetic presentation and strikingly territorial nature of the white matter changes seen on MRI, a diagnosis of amyotrophic lateral sclerosis (ALS) was initially considered by the referring neurologist. The apparent presentation of a rare ALS variant in association with celiac disease—a condition with various neurological manifestations—made it entirely appropriate, however, to review the initial diagnosis and institute treatment for celiac disease. Ultimately, improvement in the patient's symptoms following treatment for celiac disease rendered the diagnosis of ALS untenable.
see study:
http://www.nature.com/ncpneuro/journal/v3/n10/full/ncpneuro0631.html

Celiac disease symptoms can be eliminated by maintaining a strict gluten free diet. A simple blood test, or a small biopsy can determine whether you do, or do not have celiac disease.

Treatment

There is no known cure for ALS. The first drug treatment for the disease is a medicine called riluzole. Riluzole may prolong life, but does not reverse or stop the disease from getting worse.

The goal of treatment is to control symptoms. Baclofen or diazepam may be used to control spasticity that interferes with activities of daily living. Trihexyphenidyl or amitriptyline may be prescribed for people with problems swallowing their own saliva.

Physical therapy, rehabilitation, use of braces or a wheelchair, or other orthopedic measures may be needed to maximize muscle function and general health.

Choking is common. Patients may decide to have a tube placed into their stomach for feeding. This is called a gastrostomy.

A nutritionist is very important to help prevent weight loss. The illness itself appears to increase the need for food and there is usually limited ability to swallow.

The use of devices to assist in breathing includes machines that are only used at night as well as constant mechanical ventilation. Patients should discuss their wishes regarding artificial ventilation with their families and doctors.

Support Groups

Emotional support is vital in coping with the disorder, because mental functioning is not affected. Groups such as the ALS Association may be available to assist in coping with the disorder.

See: ALS - support group

Outlook (Prognosis)

There is progressive loss of ability to function or care for oneself. Death often occurs within 3 to 5 years of diagnosis, about 20% of patients survive more than 5 years after diagnosis.

Possible Complications

Inhaling food or fluid
Loss of ability to care for self
Lung failure (See: Adult respiratory distress syndrome)
Pneumonia
Pressure sores
Weight loss

When to Contact a Medical Professional

Call your health care provider if symptoms suggest ALS, particularly if there is a family history of the disorder.

Call your health care provider if ALS has been diagnosed and symptoms worsen or new symptoms develop. Increased difficulty swallowing, difficulty breathing, and episodes of apnea are symptoms that require immediate attention.

Prevention

Genetic counseling may be advised if there is a family history of ALS.

EyeWriter Initiative

2010-06-11T10:44:00.001-04:00

EyeWriter Initiative

The EyeWriter project is an ongoing collaborative research effort to empower people who are suffering from ALS with creative technologies.

It is a low-cost eye-tracking apparatus & custom software that allows graffiti writers and artists with paralysis resulting from Amyotrophic lateral sclerosis to draw using only their eyes.

The Eyewriter from Evan Roth on Vimeo.

EyePhone: New Cellphone Software Tracks Users' Eye Movements For Control | Popular Science

2010-05-25T14:52:00.000-04:00

EyePhone: New Cellphone Software Tracks Users' Eye Movements For Control | Popular Science

LITHIUM DOES NOT SLOW ALS PROGRESSION

2010-04-06T11:21:00.001-04:00

Lithium doesn't slow Lou Gehrig's: study

The Associated Press

Lithium doesn't help patients with ALS, or Lou Gehrig's disease, contrary to previous study results, new research says.
Results from a small study published two years ago suggested the drug, often used for depression, could slow the fatal neurological disorder. Many ALS sufferers and their families rushed to try it, spearheading a patient-led effort to test lithium without doctors.

'There's no rush for patients to take lithium.'— Dr. Swati Aggarwal

In the first trial to scientifically assess whether lithium works for Lou Gehrig's disease, doctors found it had no effect — and stopped the study early because it seemed futile. The results were published online Tuesday in the medical journal, Lancet Neurology.

American and Canadian doctors enrolled 84 patients with Lou Gehrig's disease into their study across both countries. About half the patients got lithium and riluzole, the standard drug used for the disease. The other half got riluzole plus placebo pills.
After nearly six months, researchers didn't see any difference: 22 of the 40 patients in the lithium group had become worse versus 20 of 44 patients in the placebo group. Patients on lithium were more likely to have fallen and suffer back pain.

"There's no rush for patients to take lithium," said Dr. Swati Aggarwal, a neurologist at Massachusetts General Hospital and the study's lead researcher. "It clearly does not have a big effect."
Lou Gehrig's disease attacks the brain and spinal cord. The disease is estimated to affect two people in every 100,000, including about 30,000 Americans and 3,000 Canadians, many of whom have trouble walking, talking and eating.

Riluzole is the only drug approved for the disease, and can sometimes slow progression by a few months. Most patients live only a few years after being diagnosed.

How does ALS evolve?

Michael Swash, a neurologist from Barts and the London School of Medicine and Dentistry in London, said it was time to close the door on lithium.
"The problem with a disease like ALS is that everyone wants to treat it and people are grasping at straws," he said. Swash was not linked to the research and authored an accompanying commentary in Lancet Neurology.
He said specialized care and nutrition worked better than current drugs and could extend ALS patients' lives by a couple of years.

Scientists don't completely understand the cause of ALS, and Swash said more research is needed on how it evolves.
"The chance of finding a treatment without understanding the disease is very small," he said.

Another study

Britain's Motor Neurone Association is funding another lithium study. They insisted the drug might still be worthwhile.
"To stop our U.K. trial at this stage would throw away the real possibility that lithium might still have a significant benefit," Brian Dickie, the association's director of research development, said in a statement.
Aggarwal was unconvinced lithium might prove to have a major benefit on ALS, but said it was possible the drug could be combined with other therapies.

"We have to look for small gains with ALS," she said. "But at this point there is no reason for patients to take lithium."

The study was funded by the U.S. National Institute of Neurological Disorders and Stroke, the ALS Association and the ALS Society of Canada.

patient-ready brain computer interface

2010-03-09T12:46:00.001-05:00

The world's first commercial effort at a patient-ready brain computer interface is on display over at CeBIT 2010, but don't go throwing out your keyboard and mouse just yet. Intended for patients suffering from locked-in syndrome and other communication-impairing conditions, the Intendix from Guger Technologies allows users to input text using only their brains.
Intendix works using an EEG-sensitive cap that measures brain activity that is focused in a particular way. You simply watch a grid of letters that flashes on the screen, focusing on the letter you want to type. When the letter you want lights up, your brainwaves jump ever so slightly, allowing the EEG to determine what to type. Guger Technologies claims that the interface is simple enough that users can utilize it relatively well after just ten minutes of training.

As the brain acclimates to the system, users can type as quickly as one letter per second, making it possible to carry on a conversation and communicate complex thoughts, a step above some of the more rudimentary communication systems that have been devised over past decades. At more than $12,000 per unit, Intendix is a bit pricey for the BCI enthusiast simply interested in the technology, but the commercialization of the product does signal a new degree of accessibility to brain computer interfacing. It doesn't appear we're going to be mind-melding with our PCs anytime soon, but this certainly marks a small step in that direction.

HOME MODIFICATIONS / EQUIPMENT REQUIRED

2009-12-07T09:48:00.000-05:00

HOME MODIFICATIONS / EQUIPMENT REQUIRED

Last time I posted, I was still able to drive my car. My arms and hands have now grown so weak that this is no longer possible. Typing has also become very difficult, and after typing I usually have a substantial surplus of letters on my screen.

Standing, carefully, with support, is still possible. I now have a new electric wheelchair with power adjustable leg-rests, back and seat. I sit in this all day, and because it is adjustable, it is comfortable. We have widened two doorways to 34" to allow good wheelchair access. In the garage we have a ramp so that I can go outside, or access our handicapped access modified van.

I also have an electric hospital bed allowing adjustments as needed. To transfer we need a rolling lift, and the lift will not roll on carpet when it is lifting me. We have solved this problem by removing the carpet and installing laminate flooring in our bedroom. We have also installed a roll in shower in our bathroom.

I am using breathing support 24 hrs a day and I have two Synchrony bipap ventilator machines and two batteries. One is mounted, with a battery, on my electric wheelchair, and the other is used beside my bed, or at any other stationary position. The bipap machines run on both 12v and 110 ac., and can be plugged into a car cigarette lighter outlet for travel. With 2 machines there is always a backup, should one fail.
It is important to charge up all batteries, and the wheelchair overnight, so that you can sustain a power failure.

Since ALS leads to total paralysis, some foresight and planning are required. In that condition, how will you communicate anything? How will you convey even basic daily needs, how will you be able to respond to anything or one?

New technology allows you continued communication. Even with total paralysis the eyes will continue to funtion. Material below is taken from the Mytobii website, see link below.

The power of a computer at your… eyes

One could say that an eye-controlled AAC device (Alternative and Augmentative Communication) is a computer – but instead of using a mouse and keyboard to control it, you use your eyes. Most eye-controlled devices are non-intrusive, meaning that you don’t have to wear or hold anything - you simply position yourself in front of the screen and look at it.

The device keeps track of where you are looking by sending out near-infrared light and measuring it’s reflection in the eyes. To click, you either stare at a point, blink, or use a switch.

More than meets the eye

You can communicate your thoughts, ideas and wishes by typing text or using symbols that can be turned into speech, sms messages, e-mails etc. Since you are looking at a computer screen, the text or symbols that you use can be changed dynamically to suit different situations. For example, you could have dynamic displays with one layout or communication page for use at home, another one at the store or in school and yet another in hospital, making communication much easier.

Eye-controlled devices are about more than typing a message. Most devices are built on a Windows platform which makes it possible to play games, watch videos, control the TV and other devices, and access the internet etc. - just what you’d expect from a regular computer.

You control your device… not the other way around

Controlling a device with your eyes is not something that is new. The technology has been around for a while but at Tobii we have refined it to fit the various needs of people with communication and physical disabilities. Superior quality, ease of use and reliability are hallmarks of MyTobii devices.

One thing that sets our products apart from others is the easy-to-use calibration and reliable eye tracking. Most users require less than ten seconds to calibrate the system, and once calibrated the systems is extremely stable. The My Tobii products operate accurately, regardless of large head movements, glasses, eye color or light conditions.

MyTobii P10

MyTobii P10 is a portable eye-controlled communication device. Everything, including a 15” screen, eye control device and computer, is integrated into one unit. Just connect to a power source, such as a wall socket, power wheelchair or separate battery. The device can be mounted for use at a desk, on a wheelchair, in bed or anywhere suitable for the user.

Who is helped by MyTobii?

Link to MyTobii

Users with disabilities such as:

* Cerebral Palsy
* ALS (Amyotrophic Lateral Sclerosis)
* High level spinal injuries
* Multiple Sclerosis

With powerful, state-of-the-art features, MyTobii brings eye control to a whole new audience of users. The interface can be configured for many different skill levels thus being flexible enough to serve many different user groups.
Dependable and easy operation

* Easy to set up
* Fully automatic
* Quick, easy one-time calibration
* Mounts to desk, bed or wheelchair
* Easy to adjust to the needs of different user groups

The eye tracker doesn't need the user to “do” or “wear” anything. Simply sit in front of it, follow a dot during a 10-second calibration and you are on your way! With flexible mounting, easy customization and different hardware options, every situation is catered to.
Reliable tracking

* No undue restraint on head movements
* Tracks nearly everyone, even those with glasses or contacts
* Works in most lighting conditions
* Compensates for large head movements without errors
* Very high accuracy

MyTobii can be relied upon to keep working. MyTobii will operate accurately regardless of glasses, contacts, and eye color or light conditions. With MyTobii, those with uncontrolled head movements can use eye control for the first time. Tobii's unique ability to deal with large head movements opens up eye control to user groups who have been unable to use other systems.
Robust design

* Eye tracking components fully integrated
* Robust casings will survive real-world use
* New portable unit with computer processing built in

Tobii Technology's world-leading eye tracking techniques and an integrated, tough design make the MyTobii eye tracking system extremely accurate, portable and tough enough to deal with real-life. No fragile external cameras or lighting units mean your system will be able to go everywhere with you. High accuracy and powerful interaction techniques mean MyTobii will also keep up with you.

Tobii Eye Tracking technology

Tobii’s eye tracking technology utilizes advanced image processing of a person’s face, eyes and reflections in the eyes of near-infrared reference lights to accurately estimate:

* the 3D position in space of each eye
* the precise target to which each eye gaze is directed towards

Key advantages

Tobii has taken eye tracking technology a significant step forward through a number of key innovations. Key advantages of Tobii’s eye tracking technology are:

* Fully automatic eye tracking
* High tracking accuracy
* Ability to track nearly all people
* Completely non-intrusive
* Good tolerance of head-motion

Keyboard help for ALS patients

2009-10-14T09:32:00.003-04:00

Since I can no longer type, I am now using this (slow) system.
RECOMMENDED!

Click-N-Type is an on-screen virtual keyboard designed for anyone with a disability that prevents him or her from typing on a physical computer keyboard.

As long as the physically challenged person can control a mouse, trackball, touch screen or other pointing device, this software keyboard allows you to send keystrokes to virtually any Windows application or DOS application that can run within a window.

The Click-N-Type Virtual Keyboard is a 32 bit application that requires Windows 95/98/ME/NT/2000/XP/Vista or later. There are other onscreen virtual keyboards around but you'll find Click-N-Type the easiest to use for getting text into those uncooperative places like browser URL "Address:" fields, Email "To:" addresses, Email "Subject:" fields, dialog boxes like "Open" and "Save As...", and many other problematic applications. Try them all. You'll see they all work fine while typing into Notepad or WordPad, but when you attempt to do some real work, with all but the expensive ones, you'll get really annoyed really fast.

The Click-N-Type Soft Keyboard was designed with ease of use foremost in mind. Oh yes, it's FREE. If you need it, you can have it. I've seen too many people trying to make money off disabled people. Of course, if you'd like to drop Bridget a line at Click-N-Type@Lakefolks.com with any comments, I guess I couldn't stop you. If you do, we can keep you informed of any fixes and/or future enhancements.

To download: http://cnt.lakefolks.com/

Panasonic Shows Robotic Bed That Becomes Wheelchair

2009-10-01T09:51:00.000-04:00

Panasonic has developed a robotic bed that transforms into a wheelchair at the command of the user. It's designed for people who have limited mobility and is intended to provide an extra level of independence.

When lying in the bed the user can summon the robot's computer system by simply calling out "robotic bed." In a demonstration at the International Home Care and Rehabilitation Exhibition in Tokyo this week, that elicited the answer,"Yes, what may I do for you."

Users can demand that the robotic mechanism lower or raise the head or foot of the bed or make the complete transformation into a wheelchair.

When the user asks for the wheelchair, the sides of the mattress, which is divided into several pieces, move away so the resulting chair is narrower than the entire bed. The user's back and head are raised as are the feet and the central part of the bed gently slides out to the side. The feet then fall and the back and head rise some more so that the user ends up in a comfortable sitting position.

The resulting wheelchair resembles the sort of seat you might see in business class on an aircraft and is fully robotic itself. A joystick on the right armrest can be used to control the wheelchair's movement.

"It took us a year from the start of development to showing it here today," said Yukio Honda, a visiting professor from Osaka Electro-Communication University who is working at Panasonic's Robot Development Center.

Before following each voice command the wheelchair checks to make sure the action that it understood is indeed the one desired. The user must affirm with a "yes" before the bed carries out the command.

In the wheelchair mode it can also detect people and obstacles in its way to safely guide the user around them.

In building the bed Panasonic sought to fit as much IT into it as possible.

An LCD touch-panel is located on a canopy that sits above the bed and means the user can watch TV, connect to the Internet, check home security cameras or make video calls from the bed.

"Even if you are lying in bed you can keep in touch with your family in another room," said Honda.

The wheelchair is capable of automatically docking with the bed. It just needs to be brought close and a button pushed for the procedure to begin.

Panasonic is planning to test the bed in several care homes both in Japan and overseas but there remains a legal obstacle before it can become a product. Safety standards and laws concerning home-help robots are yet to be considered in many countries so until they are codified, and manufacturer liability limited, the bed will likely remain off the market.

http://www.pcworld.com/article/172943/panasonic_shows_robotic_bed_that_becomes_wheelchair.html?tk=rss_news

Cutting edge new developments for ALS patients

2009-07-22T12:34:00.006-04:00

The Audeo is being developed to create a human-computer interface for communication. When a person intends to speak their brain sends muscle instructions in the form of electrical signals through the nervous system. These electrical signals stimulate the muscles to, under normal circumstances, produce the desired speech. In many cases however, disease or disability can prevent the muscles from responding to this stimulation. The Audeo gets around this by directly utilizing the electrical activity itself, which even in severe cases can still be present.

The "AUDEO" will give me
the thing I need more than
anything else; the ability
to talk to my children.

Dave (age 41, diagnosed with ALS in 2004)

The Audeo sensor is a highly integrated, extremely sensitive sensor of neurological activity. It noninvasively detects electrical activity at the surface of the skin. The Audeo actively processes this activity to make it a robust control signal. This control signal can then be connected to a speech engine in various ways to give back to a person, the ability to communicate.

Current Applications of The Audeo:

The AudeoBasic for Communication– We have developed a method for individuals who have lost the ability to speak to be able to communicate again by using the neurological signal from the brain to control a speech generation software.

Future Possible Applications of The Audeo:

Wheelchair Control – By incorporating the Audeo with additional hardware, we have successfully controlled a wheelchair without the need of physical movement. To see the wheelchair in action, watch the wheelchair demonstration. wheelchair demonstration

see also: http://www.theaudeo.com/tech.html

ANOTHER, RELATED ARTICLE, IN DE SPIEGEL, GERMANY ON AUGUST 27, 2009:

08/26/2009

Playing With Your Head
The Dawning Age of Mind-Reading Machines

By Hilmar Schmundt

Imagine controlling machines, typing text or juggling balls using nothing but the power of thought. What sounds like far-fetched science fiction is gradually becoming possible, providing hope for disabled patients -- and new gimmicks for the computer gaming industry.

DIZ SENTENS IS WRUTEN WID TAUGHTS. No keyboard, no hands, no blinking even. I think, therefore I write.

My original plan was to write this article with nothing but the power of thought, but the technology of transforming ideas into characters is still crude and prone to error. The first word alone took a few minutes, and even after that the result was still "diz" instead of "this."

Still, that little sentence is like a little miracle. The old dream of mind-reading is slowly becoming reality -- though this time around it is the product of machines rather than the minds of fiction writers.

"The advances are tremendous," says Christoph Guger, the developer of a brain-reading system. "In the past, you would have had to train for days. Today, entering text takes only a few minutes."

Guger is an engineer and a businessman. But with his hair falling past his jacket's collar, he looks the part of a start-up entrepreneur. Still, he is certainly not new to the business. His company, Guger Technologies, which is based in the Austrian city of Graz, has been a supplier to countless brain-research laboratories for years. In addition to scalpels and medications, though, Guger also sells thought-transport technology.

Guger recently presented his latest thought-reading system at a workshop entitled "Brain-Computer Interfaces" held at Berlin's Charité, one of Europe's largest university hospitals. The new electronic interfaces between brain and computer are referred to as BCI.

Hardware and Wetware

The goal of BCI is to enable the user to use thoughts -- instead of a keyboard, mouse or touch screen -- to control a computer's actions. But what sounds like telepathy is, in fact, quite banal. First the user puts on a device that looks like a bathing cap. Then an electrically conductive gel is squeezed through small holes in the cap onto the scalp. Finally, eight electrodes are plugged into the cap, and a colorful array of dreadlock-resembling cables are attached to the electrodes. The cables are then connected to the computer through a signal amplifying interface. So much for the hardware.

Then the "wetware" -- the term IT researchers sometimes use to refer to the brain -- takes over. An alphabet flickers across a screen in front of the subject, and the letters light up one at a time. The user waits until the letter he or she wants to use appears. When it lights up, the brain has an involuntary reaction that produces a small "electric potential," a tiny increase in voltage of about 15 microvolts, which is 100,000 times weaker than the voltage generated by a flashlight battery.

The principle is based on the tried-and-tested EEG, or electroencephalogram. The brain's small gray cells fire off electrical signals, which can be measured on the surface of the scalp. Guger's special method is called P300, a reference to the sudden fluctuation in voltage he is looking for, which appears in the visual cortex of the brain 300 milliseconds after each expected letter flashes on the screen.

This method is very rudimentary in the sense that it doesn't really read a thought but, rather, merely the average activity of millions of neurons. Likewise, those neurons may not be reacting only to letters, but also to someone else's sneeze or to tightness in the subject's left shoe. Guger's current task is to filter all of these interfering signals out of the chaotic flow of thoughts in the brain.

Brain Caps for Pinball

As challenging as this task might be, there was still a lot of excitement at the Berlin workshop. The project involves a rapidly growing group of researchers hoping to capture thoughts with what can best be described as an electronic camera. "Ten years ago, there were perhaps a dozen research groups in this field," says Klaus-Robert Müller, the director of the Machine Learning/Intelligent Data Analysis Group at the Technical University of Berlin. "Now there are more than 200."

Müller has also developed a BCI that works in a similar way to Guger's mental typewriter. His system isn't based on tediously poking around in a jumble of letters but, rather, on lightning-fast reactions. To develop the system, Müller has his subjects use their brain caps to play pinball.

When they think "right," the lever on the right side pops up. As if moved by the hand of a ghost, it flings the ball back into the game without anyone having touched the controls.

Müller is working closely with John-Dylan Haynes, one of the stars of the elite thought-reading community. Haynes attracted attention last year when he reported that, using a magnetic resonance imaging (MRI) machine, he had correctly guessed the decisions of his subjects before they were able to act in more than half of the cases. A full seven seconds before they moved a finger, Haynes could see that they were planning to press a specific button.

After Müller's presentation, Niels Birbaumer stood up to speak at the Berlin conference. Birbaumer is the director of the Institute of Medical Psychology and Behavioral Neurobiology at the University of Tübingen in southwestern Germany and is considered a pioneer in the field. For years, he has been trying to teach people with physical handicaps to control their wheelchairs or prosthetic limbs using only the power of thought. "Our successes are still modest," he says, "but I'm already totally crazy with hope." He expects that within two years he will be able to use his system with locked-in patients -- that is, paralyzed individuals who are fully aware of their surroundings but can move nothing other than their eyes -- for the first time within two years.

Communication with these types of patients is something of a Holy Grail in the profession because it promises to make it possible to help locked-in people like the lead character in the 2007 film "The Diving Bell and the Butterfly." In the film, an almost totally paralyzed patient dictates his memories to his therapist using the only means of communication he has left: blinking.

Mindreading Machines

By Hilmar Schmundt

Part 2: Eavesdropping on Dreams

Completely locked-in patients, on the other hand, can't even blink. All they can still control is their neurons.

The prospect of getting a glimpse of those thoughts is by no means hopeless. Birbaumer has already demonstrated that the brain waves of locked-in patients respond to various pieces of music, familiar faces and grammatical errors.

The BCI experts now believe that their technology is on the verge of a major breakthrough. Their successes are indeed astonishing, but they still have a long way to go before realizing their ambitions. Last fall, Japanese researchers reported in the journal Neuron that -- with the help of a technology known as functional magnetic resonance tomography -- they had observed the brain processing certain images. This promptly led them to speculate that one day it might even be possible to eavesdrop on the "illusions and dreams" of the brain.

In an atmosphere in which everything seems possible, though, there is a great temptation to hope that the power of thought can somehow make the pitfalls of technology magically disappear. But we still haven't reach a point yet where we can control things with thoughts alone.

For example, for many years now, the American firm Emotiv has advertised a system that allows paralyzed people to control their wheelchairs. But neither emotions nor thoughts are involved. Instead, Emotiv's technology is based primarily on signals produced by facial muscles. It has everything to do with smiling and blinking -- and nothing to do with controlling with your thoughts.

But what happens if the day comes when we actually are able to drive cars -- or even fly fighter jets -- using our thoughts alone? The US Department of Defense finds this vision so promising that it has already invested $4 million (€2.8 million) to develop a certain kind of telepathy. The goal of the project -- dubbed "Silent Talk" -- is to enable soldiers to communicate with each other "on the battlefield without the use of vocalized speech through analyis of neural signals."

Opinions vary on how much of this research is science and how much is science fiction. A report by the MITRE Corporation, a consulting firm headquartered in Virginia, derisively describes brain control as a crude technology. According to the report, the problem is "in part due to the early stage of development of the associated technologies, and in part due to limited understanding of the central nervous system." The report soberly concludes that "the possibility for using such brain control in a military scenario is not readily apparent."

Even the prophets of the new era cannot deny that many systems are highly prone to error. In most cases, the detection rate is around 70 percent. In addition to the cable cap, the conductive gel and a computer, users also need a great deal of patience. Another problem is that about 30 percent of subjects have proven to be "EEG-illiterate." In other words, their brains remain impervious to the machines.

All too often, exorbitant promises are associated with this visionary technology. For example, in the game "Mindball," two players wearing EEG headbands compete by becoming as relaxed as possible. The player who is better able to relax his brain -- and thereby occasion uniform vibrations -- can drive a ball the farthest onto his opponent's side of the game table.

According to the companies that sell the game, it can provide significant benefits to players. They cite a study "conducted by London's prestigious Imperial College demonstrated that EEG feedback can improve academic performance and creativity."

Electrifying Audiences

The distinctions between science, art and slapstick are often vague, especially when people do things like artist Adi Hoesle, who produces "EEG sculptures" or sells colorful swirls on a canvas while claiming that they are images of his thoughts. One of his works is titled: "I'm so surprised by the red in my head."

Meanwhile, an orchestra in which some of the instruments are brain-controlled is performing in small theaters around Europe. Its musicians wear gimmicky, brightly colored EEG caps on stage.

Such theatrical effects are part of a long tradition, a sort of colorful flipside of science. For example, when so-called "natural philosophers" were studying electricity around 1750, they developed parlor games, such as producing sparks when a couple kissed. They also hoped to use therapeutic bursts of electricity to help lame people walk again. Their audiences were -- literally -- electrified.

Even a company like Mattel, known mainly for its Barbie Doll products, has now discovered the allure of brain control. The new system Mattel is introducing at computer trade shows is called "Mindflex." According to the company's fact sheet: "A true mental marathon, Mindflex exercises the brain in an entirely new way as players learn to continuously control their brain activity."

So, you ask, how does it work? To train the brain, the user puts on a headband with sensors at the temples and a cable connected to something that looks like a mini miniature golf course. Then the user tries to master the first task: balancing a small ball above an air current, causing it to levitate and making it pass through a plastic ring.

A cluster of curious onlookers has formed at the trade show. The players are doing their best not to get nervous, collect their thoughts and concentrate on the ball. Sure enough, the more they are able to descend into mental nothingness, the higher the ball hovers in the air.

Mattel refuses to divulge how the device works. Experts assume that the headband -- like the sensors used in Mindball -- measures alpha waves that pulse through the cerebral cortex at about 10 times a second when a person relaxes.

In any event, playing these thought-controlled games produces an indescribable sensation. It's as if you were using a new muscle that you had only heard about but never experienced -- the organ underneath the top of the skull. Astonished audiences must have felt a similar sensation in the 18th century, when a kiss produced a spark.

It took another 200 years before it was discovered that what was once a cheap party trick could have many other uses and that the science on which it is based keeps the Internet, the stock markets, the global economy -- and thoughts -- running today.

Translated from the German by Christopher

source: http://www.spiegel.de/international/zeitgeist/0,1518,644296,00.html

Have you thought about ORGAN DONATION?

2008-10-22T16:34:00.002-04:00

Read this first:

click here

The First St. Thomas walk for ALS

2008-10-11T20:36:00.005-04:00

2008-10-11T19:10:00.004-04:00

The first walk for ALS was held on Saturday September 27, 2008 in Pinafore Park with approximately 250 people participating. The walk was organized by Steve Barber and friends and family and raised over $ 37,450.00 for research into cause and cure for ALS. The two St. Thomas ALS patients, Steve Barber and Chris Van Doodewaard, participated in the walk.
Dr. Michael Strong of UH spoke and informed us of some exciting new developments. The neurological team at UH in London will be expanded with leading experts from Japan, Chile and Spain. They are pursuing a very first breakthrough in developing treatment for this disease.

A warm thank you to all who participated by giving and / or walking!

2008-10-10T15:50:00.014-04:00

When the stock market crashes or your health fails.....

2008-10-02T20:00:00.001-04:00

Water in a dry place. Isaiah 32:2

Are your outward circumstances dry? Are you rich?
Wealthy society is generally as dry as the granite hills. Gold and gospel seldom agree.
Are you poor? Poverty is a dry place to those who are not rich in faith. Are you engaged in business? How often do its problems parch your soul? To rise up early and toil late amid losses and crosses is to dwell in a dry place
Oh to feel the love of Christ flowing! This is to have “rivers of water”. True religion is to have Christ when you are losing money, when checks bounce, and when banks fail. It is sweet to be able to rejoice in Christ even when you are out of work, to have Christ even when your wife is sick, to have Christ even when your precious child has to be buried, to have Christ when your head is aching, to have Christ when your poor body is half starved.
You will never know the sweetness of Christ until you know the bitterness of trials. You cannot know His fullness until you see your emptiness. I pray that it may be your experience to always feel that you are going down and Christ is going up, to become poorer and poorer apart from Him, while knowing more and more of the priceless riches which are yours in Christ Jesus. Christ will be dearer and dearer as you have less and less esteem of yourself.
Christ is “rivers of water in a dry place” (Is. 32:2). “He who believes in Me shall never thirst” (John 6:35).

C.H. Spurgeon

Wedding Scott and Jenifer

2008-09-24T09:52:00.005-04:00

The Lord has been gracious to us, and allowed us to see all our children joined in marriage to their lifelong partners. Saturday, September 20th, 2008, was the festive day of Scott and Jen's wedding. It was a bright and sunny day. The father of the groom, Rev. John Koopman, officiated and preached the Word. Beautiful music, fitting the occasion, was made on the church's organ by Brian Luth, and on the piano by Lauralee Van Doodewaard. We are thankful for the Lord's leading in the lives of this young couple. It is our prayer that they may live to the glory of our Lord and Saviour.

To see their pictures click here

Quote from J.C. Ryle

2008-08-06T21:50:00.003-04:00

By affliction He teaches us many precious lessons, which, without it, we should never learn. By affliction He shows us our emptiness and weakness, draws us to the throne of grace, purifies our affections, weans us from the world, and makes us long for heaven. In the resurrection morning we shall all say "it is good for me that I was afflicted". We shall thank God for every storm.

	The World's First Commercial Brain-Computer Interface
	New Type of Brain-Computer Interface Lets You Control Robots With Your Eyes
	Details Of Brain-Implanted Speech Synthesizer For Locked-In Syndrome Revealed In New Paper

ALS or Lou Gehrigs disease

Living with A.L.S - part 1

Living with A.L.S - part 2

Living With ALS – Sandy Stuban

Living with A.L.S Peggy; since 2008

SOLUTIONS TO ALS CHALLENGES 2010

NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease - Gary Schwitzer's HealthNewsReview Blog

Veterans with Lou Gehrig's to get benefits - CTV News

Common Webcams Could Be Used to Continuously Monitor Your Vital Signs | Popular Science

Panasonic's Robotic Bed Transforms into a Mobile Chair, Makes Standing Up Obsolete | Popular Science

Harper vows action for vets with ALS

Researchers Translate Thoughts into Speech, Potentially Allowing "Locked-In" Patients to Communicate | Popular Science

Links to ALS information

Lou Gehrig may not have had Lou Gehrig’s disease

Wheelchair can Automatically Follow A Human

Voice recognition

Text that is as good as your word

'Sniff Detector' Lets Those Lacking Mobility Drive a Wheelchair With Their Noses

Related Articles

Inhale, exhale and move forward

Inhale, exhale and move forward

New invention enables quadriplegics to maneuver.

General Information about the Disease

Amyotrophic lateral sclerosis

Definition

Alternative Names

Causes

Symptoms

Exams and Tests

Treatment

Support Groups

Outlook (Prognosis)

Possible Complications

When to Contact a Medical Professional

Prevention

EyeWriter Initiative

EyePhone: New Cellphone Software Tracks Users' Eye Movements For Control | Popular Science

LITHIUM DOES NOT SLOW ALS PROGRESSION

Lithium doesn't slow Lou Gehrig's: study

The Associated Press

How does ALS evolve?

Another study

patient-ready brain computer interface

HOME MODIFICATIONS / EQUIPMENT REQUIRED

Keyboard help for ALS patients

Panasonic Shows Robotic Bed That Becomes Wheelchair

Cutting edge new developments for ALS patients

Have you thought about ORGAN DONATION?

The First St. Thomas walk for ALS

When the stock market crashes or your health fails.....

Wedding Scott and Jenifer

Quote from J.C. Ryle