Spinal Cord Resources Network

The site for news and information for the disabled community

SCRN is on Slashdot.org!

Yesterday our story on Tylenol based drugs possible removal from store shelves made it on Slashdot, one of the premier news websites on the Internet. At the time of this writeup there are over 600 comments to the story. We are pointing to the comments so you can get a chance to see what other think about this story. Note that you can post comments on either Slashdot or SCRN directly. One of the things that differentiates our site from other news sites is that we provide a simple way for you to post your comments and concerns. This lets other know that they are not the only ones having that problem, and also allows ideas to be spread across the net.

Please take a look at what the folks at Slashdot are saying and then comment on what you think.

Brain controlled wheelchair displayed

Toyota displayed a brain controlled wheelchair in Japan. The car company has been working on man kinds of control systems for their cars and this came out of a research group within the car company. The heart of the system is a computer that runs a special program called a neural network. Neural nets have been around for many years but it has been difficult to train them easily so they perform the actions needed. The networks function similarly to our own brains,creating connections between motor movement and sensors. Where our brains utilized data from the five senses and then move the legs and arms properly so we can walk. The computer takes input from electrodes placed on the skull of the patient and turns on motors to move the wheelchair or to turn the steering wheels. (Source: Informationweek)

The more time the patient invests with the computer, the better it gets at deciding what to do. The computer takes repeated inputs to do the same actions until the correct response is given for a particular thought. According to researchers at Toyota, the chair can be full trained in seven days if at least three hours are given each day to teach. Because the neural network has been so easy to train, they are planning to use the same technology in the movement of arms and hands. Typically artificial arms move by pulling muscles in the back or shoulder. By using the computer, the patient can just think about moving their arm or hands and the function just as their original limbs.

This is very important research for disabled people that are confined to wheelchairs or beds. The best technology consists of a laser mounted to the forehead and a computer reads where the laser points to on the screen. Various commands are displayed on the screen and the patient can pick which one the want to use. But that is nowhere near the capability of actually moving arms or the wheelchair by think about it. So instead of waiting for a computer to figure out what command is pointed to, a hand can pick up a glass and bring it up to their lips. This technology can bring a much better lifestyle to the patient by allowing them to do day to day activities that were all but impossible before.

FDA may ban key pain killers

The FDA has determined that Tylenol enhancing pain killers are dangerous enough to be pulled from the market. Drugs including Vicodin, Hydrocodone, Lortab, Maxidone, Norco, Zydone, Tylenol with codeine, Percocet, Endocet, Darvocet may be permanently banned from the US market, even if the patient has a prescription fro a doctor.The problem is the key ingredient - acetaminophen can easily damage or destroy a patient’s liver if more than 2000 mg are used per day. In man cases that means if you take a pain killer and then take two extra strength Tylenol, you may have gone over the maximum dosage per day. Most people do not understand how dangerous Tylenol can be in large doses, or that many drugs use acetaminophen to enhance the capabilities of the drug. Since there are so many drugs that are tied to this problem the FDA may instead put more extensive warnings on the boxes and prescription paperwork to let the population know there is a problem. Another may be to demand that doctors fully explain the issues with taking these kinds of drugs and make patients sign a document saying they understand the danger. (Source: Philly.com)

While we all appreciate the work that the FDA does in making sure our medicine is both effective and safe, this is one time that they are over acting. Taking some of the most tested and understood medications off the market because patients are not being trained by doctors to be careful is crazy.By adding more documentation with large red letters and making patients signing documents tells them that this is important. Additional warnings could be put on all medication that uses acetaminophen so it is easy to tell when you are getting close to the maximum daily dose.

Patient training is an ongoing issue that needs to be addressed across all drugs. Many patients take pills without regard of interactions or of what the contraindications are. Everyone should have a good understanding of what to look for when they are allergic to the medication. If you are taking prescription drugs, get a copy of the Physicians Desk Reference and the Nurses Desk Reference. They both give a wealth of information on drugs including which interact with others. Keep in mind that even if you are not allergic does not mean that prescriptions play well with each other. Good pharmacies are supposed to have software that flag when interactions can happen but it is not perfect. Plus if the pharmacist is busy they may miss a warning that flies across the screen with all the other things they are working on. It is up to each of us to make sure we are safe and that the drugs we use are working properly and are not causing problems.

Disabled trapped in apartment

A woman in Canadian woman is trapped in her apartment for three days and counting because the elevator is broken. Her apartment is on the third floor and she has no way of using the stairs to go to the grocery store or even collect her mail. Man calls have gone to the building management and the elevator repair company with no results. The building company said that the elevator was out of their jurisdiction and therefore were unable to help her. The elevator company said that because they did not know what the problem was that this elevator was low on the repair list. When the woman told the repair company that she was trapped for the last three days they said that there was nothing they could do and would not give a repair date. She then called the city disability advisory committee and let them know what had happened. Calls from the committee to the building management company and elevator companies have made some headway. The elevator was repaired for part of one day but it promptly failed again later in the day. She is hoping that the city can find a legal way of forcing someone to come out and fix the elevator.

Anytime that elevators are out is a scary time for the disabled. It is sad but not surprising that repair companies don’t care about a repair. These companies don’t seem to realize that they are trapping someone in their home until things are fixed. Until then they have to hope for people to bring them food and supplies. There is no reason for anyone to be held hostage in their home because a company doesn’t care what they are doing. We hope that the city can sue the elevator repair company to do their job and repair the elevator for good. This shows the able bodied that the disabled need help and without standard items like elevators, the disabled can be put into dangerous situations.

There must be laws in Canada that apartment dwellers can use to make the building owners fix their problems. This is a common problems in the US as well, but there is no reason to turn a building into a prison because the elevators are broken. The same goes for heat, air conditioning and any other item that is needed. Major US cities have laws in place to make building owners do the right thing, if this doesn’t exist in Canada then this is a good time for this woman to get on the phone to her parliament officials. Let them know what is going on and start working on a law to keep the disabled safe.

Can the disabled escape nursing homes?

For years disabled people were forced to live in nursing homes. Even if they became well enough in hospitals to take care of themselves communities refused to accept them. Home owner associations created rules that made it all but impossible to live in a home in the neighborhood. Numerous attempts were made to sue the neighborhoods to allow the disabled to live there but to9 no avail. Then the Olstead Law was enacted that allowed the disabled to live wherever they wished to. The federal law overruled the numerous home association rules but the home owners went to court to fight the new law. Evidently the disabled were believed to be an alien live form to be avoided at all costs.The last thing that these groups wanted was for their children to see someone in a wheelchair. (Source: Public News Service)

This continued to the Supreme Court which upheld the Oldstead Act and the disabled were finally allowed to live wherever they wanted - just like every other American. This law is now in danger of being destroyed by the medical industry. Medicare was designed to help the disabled to pay for medical bills and to gain access to prescription drugs. While this helped the disabled to live better lives and to pay for medical care without the fear of filing for bankruptcy. However, Medicare as well as other insurance companies are only willing pay for the disabled to be treated in nursing homes. This means that people that can take care of themselves but need nurses to administer drugs once a day or need help dressing cannot do it at home are stuck in the hospital or nursing home. 

The Community Choice Act, presently being debated in the Senate, would once again give the disabled the choice of where to live when they need skilled nursing care. This act would force insurance companies to pay for skilled nurses at home which would save money b not paying for a hospital type setting, This also allows the disabled to have a real life outside of the hospital nursing  home. While in a nursing  home, you are a prisoner - unable to leave to go shopping or visit a friend. Never being able to leave your room is tantamount to being sent to jail. Supposedly you have rights according to the constitution, but not according to your insurance company and the nursing home.

Now is the time to call your congressman and senators to let them know what you need in the new Medicare overhaul bill. The disabled community is terrible at getting off their behinds and getting involved in the lawmaking process. We realize it can be difficult when pain is high or there are man doctor appointments, but while sitting in the waiting room call your governmental officials. The work for you and they are paid a fortune to listen to what you have to say. Medicare will never be any better than it is now if we just sit and do nothing. Washington will believe that everything is fine and will leave all the screw ups and insane practices in place if we do nothing. Please call and become part of the process. Democracies are not spectator sports - they expect that all the voters will learn about what is going on and will tell they congressmen their wishes. Don’t let someone else make your decisions for you, believe us when we tell you that others will not make good decisions for you.

New cathetor bag connector

From time to time we run across a new product that we find so useful that we do a writeup on it. The Bioderm bladder control systems definitely fit into the writeup criteria. This company has developed a product that connects directly to the top of the male genitalia. A nighttime bag or day bag can then be hooked up to the other end. Since the Bioderm connects to a small amount of skin at the top of the genitalia there is no chance of having extra skin pulled or hair pulled out. Regular condom type catheters routinely tear out hairs because the adhesive runs the entire length of the genitalia to the end where the hair is. Bioderm has also thought out how to quickly add a new bag without having to pull apart the whole system attached to your body. By creating a quick release system, it is simple and safe to swap out a new bag or to use a temporary cath bag to get urine for testing.This means that the Bioderm can stay attached to your body for several days at a time without having to constantly put a new condom catheter every time a bag is filled with urine.

By simplifying both the initial attachment and bag replacement Bioderm has an elegant solution that allows you to do your daily activities and to quickly change bags so youo don’t have to waste time attaching new condom catheters. Bioderm also has a special going on for those folks that have never tried it but would like to see if it works for them. By calling the company they will send you a handful of their connectors that you can try a home to see how they work into your daily life. If you like how they work you just contact your insurance company (Medicare supports them) and just let them know how many you need per month.

This is the first system we have come across that is simple to use and gives the flexibility of connecting new bags or a temporary bag to collect urinary samples.Save yourself pain from overstretched skin and torn hair by switching to Bioderm. We are sure you will be happy with the results. Note that we are using the Bioderm products at Spinal Cord Resources but we are not being paid to write anything up for them or about their products. We are just so impressed with the company and product that we decided to do a write up so everyone can read up on what we found. If you have used Bioderm we would like to hear from you in the comment section below. Also, if you have questions about how these work or how you can get them please either do a posting in comments or if it is personal send an email to webmaster (at) spinalcordresources.com.

Chronic pain and depression linked

A study at Wayne State University in Detroit, Michigan has found a strong link between chronic pain and depression. Social status and class did not make a significant difference in the findings. However, the type of work did show marked changes over time. Those workers that worked in strong physical activity were found to have a much higher chance of depression then those that worked in a office environment. Level of health insurance was also found to have a significant change in the level of both pain and depression. Those that had poor or no insurance had a statistically increased level of pain and depression than those that had good insurance paid by the company. The last finding was that African Americans were much more likely to have depression from chronic pain than whites. (Source: Physorg.com)

It is not surprising to those that live with continuing chronic pain that depression can come in to the equation. The pain can make it difficult to do regular life things like going to work or having fun at an event. The pain can make it almost impossible to go to fun events or to go out with friends. If you find that you are shutting out friends and family and stop working on hobbies that you may have the beginnings of depression. If this is the case do not wait for it to get better. Go talk to someone you can trust and see if they also think  you need to get professional help. Your doctor can help with specialized drugs or can send you to a psychologist that specializes in this type of depression. There is no reason to sit in an empty room locked out from the world because of chronic pain. Both pain and depression can be handled and controlled so that you get your life back. One of the toughest things is to admit that you have a problem so that you can get help. Don’t wait for it to get worse as the longer ou wait the harder it will be to turn things around.

Disabled man has egg thrown while traveling in England

A disabled man that was traveling the Iarnrod Eireann on the Cort to Thurles line has been repeatedly harassed by the crew on the train. The man was given permission to travel on the train as long as he stayed in the food cars so there was room for everyone to move around. Unfortunately the powered wheelchair was wider than certain areas in the cars and he would become stuck while trying to move. Instead of trying to help this disabled man the crew became nasty and rammed him with food carts to vent the anger they had to deal with a man in a wheelchair. In addition, the crew would gather to talk about the man in public and point to him so that everyone in a particular car would know who they were talking about. To add insult to injury, as the man was disembarking from the train the crew members were throwing raw eggs at him. The train company has offered to give the man a manual chair but that was refused because he does not have the strength to move himself with his arms. (Source: Belfast Telegraph)

Obviously there are serious problems with how disabled people are treated by company employees. It is not this man’s fault that he is disabled or that he requires a powered chair to get around. He has the right to be anywhere that an able-bodied person is and should not have to worry about physical torture. Crashing carts into this man because he can’t get out of the way fast enough is truly disgusting. One wonders exactly the kind of people are hired by a ghoulish company and how they stay employed. If there was ever a group that needed anger management classes as well as classes on how to deal with people different than themselves, it is this group on the train. There is no excuse for this disabled man to dodge trays and eggs thrown at him as he moves from train car to train car. I seriously doubt that these employees would like to be treated as they treated this man on this trip.

This is also a good time to talk about getting an ADA type law in the UK. Disabled people have been on the bottom rung of society for too many years. Most of us had good paying jobs and paid our taxes until we were injured to the point that we could no longer work. At that point society has a responsibility to take care of their own, now just whoever is strong and beautiful today. That type of thought died out when the Nazis were defeated in 1945. Disabled people are just like anyone else, they just need equipment and help to move around from place to place. Most of us don’t want the able bodied help or pity — but we do want to be on the same level as everyone else. We should be able to get into buildings and homes without any special equipment. Taxis should be modified so they can take a wheelchair. The disabled as demanded to go back to work regardless of their injury, but society makes no attempt to help make that happen. Helping a disabled person get through a manual doorway not only helps them, it helps you to be a better person.

Congress working on new long term disability bill

Congress is working on a new bill to give long term care to everyone that works. The bill allows those that have been injured to have nurses come into the home. As it stands now, critically injured people are sent home from the hospital with no medical care coverage. For the next 18 months the injured have to hope that they will not require expensive hospitalization. After 18 months Medicare finally kicks in but there are other issues that can easily throw a family out in the streets. Those that are permanently unable to work are put on Social Security Disability Insurance, but that typically only pays out enough live on a month to month basis. If there are expensive prescriptions that are required there is a serious problem called the donut hole. This hole means that if you and your Medicare provider pay out more than $2700, then coverage stops until you personally pay out $4100 in cash. Since virtually everyone on SSDI cannot pay that kind of money, they stop taking their medication until next January when everything kicks back in. More work needs to be done, but this new bill will at least cover people from catastrophic injuries throwing them into the streets because they cannot pay their bills anymore. (Source: McKnights)

This is the time for all of us to contact our congressmen and senators. After many false starts and promises, this is the first time in many years that real changes in Medicare and Medicaid can be made., However, unless we let congress know what we need and why, we can expect things to be just as screwed up as it is now. We must have coverage that can pay the existing bills and gives us reasonable access to hospitals and prescription drugs. It is unreasonable to think that someone that cannot work can somehow come up with large sums of money to pay for their health care. If SSDI pays $2000 a month and your bills are $1800 a month, how can you pay an additional $900 in prescription drugs that month? Medicare and Catastrophic Care must be fit together so that when one runs out he other immediately picks up without the donut hole.

In general you should always be in touch with your folks in congress. They make a lot of money and are paid to listen to you, to voter. Every issue that they vote on costs us money and civil rights. Democracy is not a spectator sport, it demands that we all get involved. It is sad when we get less than 50% of voters actually coming in to vote. Why would you let someone else make your decisions for you? Let yourself be known so we can have the type of government and country that we want. The more we get involved the better chance that we can get the changes we need and the people in place to protect us when emergencies arise.

Computer-brain interface to give limb movement back

Scientists at the Massachusetts General Hospital are in a pilot program to attach a computer to the brain of a patient with spinal cord injuries. The computer can interpret signals from the brain and then move either a mechanical arm and hand, or move the arm and hand of the individual. This is still very much research, but computer signal processing is constantly increasing making it possible for ever finer muscle control. Creating an interface between computers and the human brain has been the holy grail of medical/computer research for the better part of 40 years. Only now have computers and interfaces become small enough to be implanted in the brain areas needed. This new study is hoping to prove that these new computers can allow spinal cord injury patients to move either artificial arms and hands, or move their own arm. If this research pans out, spinal cord injury patients will be able to live a more normal life by just thinking about moving rather than ask a nurse to get something or turn a page on a book. (Source: Genetic Engineering News)

MIT researchers have been working on these problems for man years. Some researchers have had computer chips implanted in their body so they could see if arms and hands could be controlled using computer interfaces. They have made great leaps in what the brain can control to the point that proof of concepts have been built. The problem is that the computers are too large to be moved and there are not enough interfaces that could be implanted in the brain move a hand efficiently. With chips shrinking in size and increasing in power interfaces can now control fingers and other muscles bringing fine motor skills within reach of scientists.

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