Friday, December 2, 2011

Devices for Helping to Transfer a Person with ALS

Lift Devices
by Shelly Lewis, Physical Therapist
and Scott Rushanan, Occupational Therapist
ALS Center at Pennsylvania Hospital

A few Pennsylvania Hospital ALS clinic team members recently attended in-services on two standing lift devices--the EZ pivot and molift models. The instruction we received at these lectures confirmed that these devices are not the best option for most PALS (Persons with ALS).

One drawback of these devices is that they can only be used once the PALS is already in a seated position. The straps that are used to operate the device have to be donned while the person is already sitting in a chair or sitting at the edge of a bed. These devices cannot safely be used for moving PALS from a lying position in the bed to a seated position at the side of the bed. This activity can be very difficult for PALS who have significant weakness.

Even if the person being transported is able to move from a lying position in the bed to a seated position at the side of the bed, the straps on any of these lifting devices are difficult to don while seated. The straps have to be wrapped around the trunk, legs, and, in the case of the EZ pivot, buttocks of the person being transferred. Any PALS with decreased strength in the trunk and arms may find it difficult to maintain his or her sitting balance at the edge of the bed while a caregiver places these straps around them.

Another problem with these devices is that they are not made to be used with someone who has significant progressive weakness in the legs. They are designed to be used with individuals who have moderate weakness in cases where strength is either stable or expected to be regained. These devices will not work properly if the person being lifted is unable to stand partially or bear weight through his or her legs. As a matter of fact, the vendor of the molift said the product was not appropriate to use on persons who cannot or should not stand on their own, without the lift. There is the potential for injury if a person who is unable to bear any weight through his or her legs uses one of these lifts.

In addition, none of the vendors we spoke to were able to get their devices paid for by insurance.  These are costly items and it is rare to find a company that will rent them to you. In some cases, insurance will give you an allowance for a lift device, but you would still be left with a bill of several thousand dollars after the allowance. Most vendors will make you pay the cost of the entire device upfront and then have you haggle for the partial reimbursement with your insurance. 

The EZ pivot had a few additional issues that would make it difficult to use - it requires much effort for the caregivers when lifting PALS, as it is not hydraulic. Also, it puts the person being lifted in a position that closes off his or her chest and diaphragm (which could be a problem for PALS with respiratory  
difficulties). In addition, the EZ pivot straps would be extremely difficult to put on a person who had poor trunk control even if they were seated in a supportive wheelchair. A PALS who trialed the EZ pivot in his home for a few weeks said it was just too cumbersome for his wife to strap him in it so he returned the device.

There are a few positive things about these machines. They are less physically taxing than a dependent lift for the caregiver when going from chair to chair. They also give easy access for hygiene with toileting. However, these benefits do not seem to outweigh the drawbacks.

If you need a mechanical lift to assist with transfers, a hoyer lift is usually more appropriate. Use of the hoyer lift involves placing a sling-like piece of fabric under the PALS. The sling and person are raised using a hydraulic lift. The person is then pushed over to the next surface and lowered down. With a little practice, the lift can easily be used with the assistance of only one caregiver. This type of lift is almost always covered by insurance. In addition, this lift assists with moving between a lying down and seated position. Plus, the sling is much easier to put under the PALS than any of the standing lift devices. The actual space the hoyer takes up is very similar to the standing lifts.

EZ Pivot

Hoyer Lift

Tuesday, November 29, 2011

BCI Clinical Trial now recruiting ALS participants (MA or CA area only)

Clinical Trials - Now Recruiting

The purpose of the first phase of the pilot clinical study of the BrainGate2 Neural Interface System is to obtain preliminary device safety information and to demonstrate the feasibility of people with tetraplegia using the System to control a computer cursor and other assistive devices with their thoughts. Another goal of the study is to determine the participants’ ability to operate communication software, such as e-mail, simply by imagining the movement of their own hand. The study is invasive and requires surgery.

Individuals with limited or no ability to use both hands due to cervical spinal cord injury, brainstem stroke, muscular dystrophy, or amyotrophic lateral sclerosis (ALS) or other motor neuron diseases are being recruited into a clinical study at Massachusetts General Hospital (MGH) and Stanford University Medical Center. Clinical trial participants must live within a three-hour drive of Boston, MA or Palo Alto, CA. Clinical trial sites at other locations may be opened in the future. The study requires a commitment of 13 months.

For more information about the study, please contact us at:
Telephone: 617-726-4218 (Dr. Hochberg)
View a BrainGate System educational animation by clicking here.

Mind over Motor: Controlling Robots with Your Thoughts

Mind over Motor: Controlling Robots with Your Thoughts
From: Discover Magazine - 12/2011 - Page 16
By: Jason Daley

Over recent months, in Jose del R. Millan's computer science lab in
Switzerland, a little round robot, similar to a Roomba with a laptop mounted
on it, bumped its way through an office space filled with furniture and
people. Nothing special, except the robot was being controlled from a clinic
more than 60 miles away - and not with a joystick or keyboard, but with the
brain waves of a paralyzed patient.

The robot's journey was an experiment in shared control, a type of
brain-machine interface that merges conscious thought and algorithms to give
disabled patients finer mental control over devices that help them
communicate or retrieve objects. If the user experiences a mental misfire,
Millan's software can step in to help. Instead of crashing down the stairs,
for instance, the robot would recalculate to find the door.

Such technology is a potential life changer for the tens of thousands of
people suffering from locked-in syndrome, a type of paralysis that leaves
patients with only the ability to blink. The condition is usually incurable,
but Millan's research could make it more bearable, allowing patients to
engage the world through a robotic proxy. "The last 10 years have been like a
proof of concept," says Justin Sanchez, director of the Neuroprosthetics
Research Group at the University of Miami, who is also studying shared
control. "But the research is moving fast. Now there is a big push to get
these devices to people who need them for everyday life."

Millan's system, announced in September at Switzerland's Ecole Polytechnique
Federale de Lausanne, is a big step in making brain-machine interfaces more
useful by splitting the cognitive workload between the patient and the
machine. Previously, users had to fully concentrate on one of three commands
- turn left, turn right, or do nothing - creating specific brain wave
patterns detected by an electrode-studded cap. That system exhausted users by
forcing them to think of the command constantly. With shared control, a robot
quickly interprets the user's intention, allowing him to relax mentally.
Millan is now developing software that is even better at weeding out
unrelated thoughts and determining what the user really wants from the

Although the disabled will probably be the first beneficiaries of Millian's
technology, we may all eventually end up under the scanner. Millan and auto
manufacturer Nissan recently announced they are collaborating on a shared
control car that will scan the driver's brain waves and eyes and step in if
the mind and the Altima begin to wander.

Jose del R. Millan

Defitech Foundation Chair in Non-Invasive Brain-Machine Interface

Disabled Patients Mind-Meld With Robots

Justin Sanchez

Neuroprosthetics Research Group

Monday, November 28, 2011

End of Life Communication Strategies for People with ALS

From Journal of the 21st International Symposium on ALS/MND
December 2010
Special thanks to my co-writer, Lisa Bruening, MS, CCC, SLP



1 ALS Association, National Offi ce, Calabasas Hills, CA, United
States, 2 ALS Center, University of Pennsylvania Health System,
Philadelphia, PA, United States, 3 ALS Association, Northern
Ohio Chapter, Cleveland, OH, United States
E-mail address for correspondence: abrownlee@alsa-national.
Keywords: communication, end of life, AAC

Background: Many people with ALS are not able to verbally
communicate at end of life and rely on many different forms
of communication systems to address medical and social
needs, ask questions, and convey fears and concerns about
the dying process. Many allied healthcare professionals have
expectations that patients will utilize an electronic communication
device until death. The results of this three year survey
fi nd that people with ALS are not using electronic communication
systems at end of life but in fact are using multiple
modalities of communication, the primary system being
low technology like eye blinks, gestures, and letter boards.
The speaker will present the results of this survey and
recommendations to the fi eld to address the communication
issues of people with ALS at end of life.

Objectives: 1) Determine how many ALS families were
aware of speech/communication issues related to ALS; 2) List
specifi c communication related topics people with ALS are
communicating at end of life; 3) Identify what communication
strategies people with ALS are using at end of life; 4) Identify
the number of people that were enrolled in hospice.

Methods: Surveys were sent to caregivers of ALS patients in
various US States for a three year period from 2007-2010.
Caregivers we asked specifi c questions as to how their loved
one was communicating 3 months prior to death, 1 month
prior to death, and the last few weeks and days of life. Surveys
were sent via regular US mail.

Results: Almost 75% of those surveyed had signed on to hospice
services; most people with ALS were communicating via
speaking 2-6 months prior to death and 4 weeks prior to death.
Days before death, most people with ALS were using gestures,
eye blinks, letterboards, and electronic communication devices.
In the last 2-6 months, less than 20% of people that had electronic
devices used them. In the initial survey, sent to caregivers
from 2007-2009, there were a total of 93 caregivers who
reported their loved one had an electronic device in the home.
48 caregivers reported that their loved one had a device and
chose not to use it – over 50%. Another 19 reported that their
loved one sometimes chose not to use it for a total of 72% that
had a device and chose not to use it. Most people with ALS
used their electronic devices for less than one month.

Conclusions: More stress needs to be placed on low technology
options and/or multi-modalities of communication systems.
Caregivers and allied healthcare professionals need to
be trained in various low technology options since it seems
families use multiple systems for communication when people
with ALS are near the end of life.

Low Technology Tool Kit

This article was written for student's but it is IMPORTANT information for people with ALS.  Even if you have the most expensive Augmentative/Alternative Communication device available, they are electronic and can break.  Your PALS needs to be prepared what to do if they do not have access to electronic devices.  Or perhaps they are not interested in using an electronic device.  The info and links below can assist people with ALS in learning a low technology, easy way to communicate.

Augmentative and Alternative Communication (AAC) Low-Tech Toolkit (2009)
The AAC Low-Tech Toolkit was developed by SET-BC to support teachers and speech-language pathologists. Choosing and developing an augmentative and alternative communication system may seem like a daunting task. However, by starting slowly and exploring the student’s communication needs and skills you will begin to find your way to the best AAC solution. Students who require augmentative and alternative communication (AAC) should have a "non-technical" or "low-technical" system. These systems are the foundation for exploring voice-output technology. A symbol assessment is often a precursor to developing non-technical AAC. This will help you determine:
  • Type of symbol the student can recognize
  • Number of selections that can be presented at one time
  • Size of selection the student can accurately target
You will also need to think about what vocabulary you will choose, where the communication system will be used and the ways in which the system can be incorporated into the student's day.
Remember that a non-technical AAC system typically continues to be an important form of communication for students after a technical system is available.
The AAC toolkit is provided to help teams explore non-technical AAC options. We hope it gives you ideas for getting students started with AAC!


These short clips contain information specific to the (AAC) Low-Tech Toolkit. The segments contain audio and/or video and can be viewed by clicking the presentation title. (Note: Viewing video requires an up-to-date Flash player).

Support Resources

Apps for AAC (Augmentative/Alternative Communication)

Apps for AAC

iPhone & iPad Apps for AAC. Article / review created by Spectronics and written by Jane Farrall. A detailed overview of some of the apple apps available for AAC.

Ides of March:Good News for Disabled Travelers for Hotel Rooms

From PVA Magazine, December 2011

The Department of Justice published revised final regulations implementing the Americans with Disabilities Act (ADA) for title II (state and local government services) and title III (public accommodations and commerical facilities) on September 15, 2010, in the Federal Register.  These requirements, or rules, clarify and refine issues that have arisen over the past 20 years and contain new, and updated, requirements. 

March 12, 2012, is the compliance date for provisions governing hotel reservation policies.  For example, on or after that date, reservations staff (of a hotel or third party) must identify accessible features in guest rooms (e.g. door width and availability of roll-in showers) and other hotel amenities in sufficient detail so a person with a disability can make an independent assessment of whether the hotel meets his or her accessibility needs.