Links to ALS information

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

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

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

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

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.

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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.

 

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

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.