Spinal Cord Resources Network » greg

Scientists cure paralysis in mice

greg — Tue, 26 May 2009 14:42:35 +0000

Scientists in Australia have cured Floppy Baby Syndrome in mice – for the first time. The team had been searching for the genes that caused the syndrome so that drugs could them be used to possibly correct the problem. Muscular actin was found to be missing in the children with this syndrome, and in it’s place heart actin was used in their bodies. this caused the babies to quickly lose control over most of their muscles and essentially were quadriplegics after a few months of life. Once the heart actin was found, the scientists worked on a method to turn on the heart actin in the muscles. After considerable trial and error, they were able, using genetic engineering techniques, to turn on the heart actin in the standard muscle fibers and were successful in mice. Mice that typically would die after a few days were found to live standard lives (about 2 years) after the genetic engineering was used on them. The next step was to find a drug that duplicated the genetic work they created for the mice so that it would be safe for humans. They are presently screening over 1000 already approved

drugs in the hopes of finding a medication that will turn on the heart actin so that human trials could begin. (Source: Science Alert.com)

It is great to hear that scientists are finally making significant breakthroughs in medicine using genetic engineering. This first success can be used as a template for other diseases that have no treatment or cure. Continued mapping of the human genome along with what the genes do appears to be the holy grail of medicine in the 21st century. Once we understand what the genes do and compare that to the diseases, we can finally start to look for medicines, plants, and other extracts that either repair or switch genes so that they perform correctly.

Pfizer offers drugs to those that have lost their jobs

greg — Thu, 21 May 2009 15:22:13 +0000

Pfizer has created a program for those that have lost their jobs and health insurance to access medications for free. The program allows these individuals to continue their regimen for up to a year to allow the patient to get back to work and insurance. Over 70 Pfizer medications are covered by this plan, including Lipitor and Viagra, at no cost to the patient regardless of prior income. The only stipulation is that the patient must have been using the medications for at least three months if they are to be covered. The company has said that they don’t know how much the program will cost but they do not plan to put a cap on it for the next year. After this point the company expects the economy to improve and that most of the people utilizing the program will be gainfully employed at that point. For more information on how the program works please go to this website.

Fore those on Pfizer medications including Lyrica this is fantastic news. Many of these branded medications are not yet available as a generic and are extremely expensive. A prescription of Lyrica alone can push you into the doughnut hole, forcing you to pay the next $4,300 out of your own pocked at which point catastrophic care from Medicare kicks in. That is assuming that you have deep pockets and can afford an additional $4000 on top of all your other bills like the mortgage, car payment, and somehow putting food on the table. Hopefully other pharmaceutical companies will follow along and help those that have lost their jobs or are on a fixed income to pay for their pills. Sure there are "programs" that supposedly help you pay for drugs, but they are just a front for agents that are told to say no 99% of the time. Every time you call one of these other drug programs (Like the ones from Purdue Pharmaceutical) expect lots of red tape and months of hair pulling just so you can be told no one will help you. For the MS and spinal cord patients with chronic pain, we recommend quickly signing up for this program and get a signed document explaining how it works and for how long in case they "forget" and suddenly cut off the program. We all know that these programs can disappear even faster than they appear.

Chinese stem cell therapy still very dangerous

greg — Wed, 20 May 2009 18:28:59 +0000

Some of the disabled believe that there are treatments available overseas that can cure brain cancer or spinal cord damage. They believe that the FDA keeps usable techniques down so that pill companies can keep making billions off of the suffering of the few. But it has been shown that the vast majority of stem cell injections either did nothing, or made matters worse. Patients found that pain is now increased at the site or that cancer has cropped up at the point of the injections. Unfortunately there are no strong standards to hold researchers to in China and other developing countries. While work is done by companies and universities, very little is done to create usable double blind studies that can prove that a treatment works. Instead these clinics hope that the success of their treatments is from word of mouth and that no science is required to keep customers coming in.Without real science, there is no way to determine if something works or not, or if it actually makes matters worse. There is a reason why western countries demand years of animal research before anything is done to a human. There are so many unknowns in dealing with stem cells to allow physicians to inject them in hopes that something useful happens. Without studies the doctors and clinics make a fortune from patients that often pay cash, and lots of it. (Source: Irish Times.com)

Don’t become a statistic. It is easy to speak to a few people that say wonderful things have happened to them. That does not mean that anything good will come to you with an unproven technology. This is the only body you will get, so you don’t want to make things any worse than they are. There is a reason why these procedures are only available in China, with no oversight they can say anything and promise the world in exchange for lots of your hard earned currency. Get involved with hospitals and research centers all over Europe and the US trying to find real answers to spinal cord injuries. Do it the right way so that you know it will be safe and will not require you to sell everything you own for a pipe dream. It would be a tragedy if you had a procedure in China done and the damage from it stopped you from getting a new procedure found to be safe and effective.

Disabled lose permission to pick doctors

greg — Tue, 19 May 2009 21:08:26 +0000

One of the biggest changes for the newly disabled includes others making decisions for them. While this is a good idea in situations where the person is in the hospital and unconscious, most other times it is a loss of rights. Spinal cord injuries do not always effect the brain, and as such, those without brain injuries should be able to decide what doctors and clinics they wish to go to. But that is not the case in Malta. While agencies help pay for medical procedures, they strictly control just where you can go and who you can use as a physician. Why were we allowed to pick doctors before our injury, but can no longer do it after? It can be surely said that the injured can pick a better doctor than any bureaucrat. It is sad that the disabled in Malta have but a few doctors that they are allowed to go to. If the doctor they can go to cannot figure out pain issues or other problems, what does the disabled person do? With the few euros they have go to another doctor and beg and plead that they take you for free? (Source: Times of Malta)

Most medical insurance plans in the US allow you to go to any doctor you want to without having to plead your case. Note that if the physician is out of network you may have to pay more to see them, but you can see them. If the busted and broken US medical system can do this simple procedure then why is it impossible on Malta. The squeaky wheel gets the oil in the US,and lawsuits usually get company and government’s attention. While it is good to see that at least one disabled person is going to go after the establishment, it would be more helpful if all complained together. But we have the same issue here where nobody wants to get involved. Evidently the disabled are not pissed off enough to start to take action on their own. Until that day happens, they can expect to be taken advantage of and to have little control over what happens in their lives. I’ve certainly had enough, how about you?

How to deal with Complex Regional Pain Syndrome

greg — Sun, 17 May 2009 15:29:32 +0000

Neurology Today has an extensive story on CRPS (Complex Regional Pain Syndrome), explaining what it is, what to look for if you think you have it, and what treatments are available. Rather than a simple web page, this is a technically written article on the syndrome that is attacking Americans in record numbers. Those with spinal cord injuries or car accidents are strongly recommended to read this article, and if it is a close match to what you are experiencing, bring it to your next doctor visit. Hopefully studies about this type of pain will remove doctors that pretend that this doesn’t exist and that patients are either making it up so they don’t have to work or are drug seekers. As with most body issues, prompt care and treatment are essental to keep this pain issue in check. Those that try to ignore the tell tale signs or refuse to seek medical care are in danger of permanently damaging their bodies and living with excruciating pain forever. Don’t let pride get in the way of having a fulfilling life without mind numbing pain. Note that most doctors either don’t know about this or don’t match up the patient with CRPS. In my case, by GP didn’t pick up on this (my chiropractor is the one who diagnosed me) because he was trained that CRPS only happens to gunshot victims. This is why it is critical to bring all your data to the doctor so he knows the whole story. Also make sure your doctor does not have issues believing in pain syndromes. If they are, you should find a doctor that does believe you and is prepared to do whatever it takes to help you recover.

The primary link to the PDF of the story is here.

Alternate local link here.

Website to help those in pain

greg — Sun, 10 May 2009 15:13:49 +0000

We have found an excellent site to help those in chronic pain. The site is http://www.painaction.com. They have many self help session to help with the mental side of chronic pain. Most times pain medications do little to stop or control this type of pain that can gnaw at you in ways the sufferer does not see. It is easy to get irritable or to snap at family members and not even see that their pain is stripping away their humanity. Don’t let this happen to you. Realize that chronic pain has to be managed at both the physical as well as the mental level.

Disabled can’t use new buses

greg — Thu, 07 May 2009 15:15:56 +0000

The town of Skelmersdale has recently purchased several buses from Wirral in England. The new buses were the double decker style and were supposedly much more comfortable and the customers really liked them. However, after putting them on the roads it was discovered that there was no way to get a wheelchair onto the bus. These buses were the older type that did not dip down to road level and let wheelchairs roll onto the main deck. This leaves the disabled community without public transportation and those that were using the disabled travel passes have no way to get around. The work around at this point is for the disabled to pay for taxi service to take them to their destination. However. most of the disabled cannot afford taxis for functions like going to the doctor or the grocery store. The city has promised to fix all of the buses so that they are fully accessible to the disabled but gave no time frame of this work having a completion date. (Source: OSAdvisor.co.uk)

It is hard to believe that the officials did not look over the buses they were purchasing to make sure that they at least gave the same level of service as the older ones did. It took rider complaints for anyone to look over the buses and find out that they do not drop down to the street level so wheelchairs can roll on. The able bodied have forgotten about the disabled many times in the US. but this boneheaded stunt takes the cake. Now the city is going to have to spend money that is not in any budget to fix the buses to get them to the service level they already had. Evidently city officials need to9 either bring on a disabled person to the board (what a concept!) or bring a wheelchair to all events so they know what the disabled have to contend with on a daily basis.

Making sure that a disabled person is on the board can solve many issues because they can bring a new dimension to the meetings and what should be done to be as accessible as possible. The able bodied cannot possibly understand why a pull open door that has a strong spring to close it is almost impossible for a paraplegic to open safely. It is easy for the able bodied, just grab the door and put your weight into it to open – good luck with that if you are in a wheelchair. This is why it is important for doors to either automatically open, or to have a button that activates a motor. To those store owners that say they never get anyone in that is disabled, maybe it is because it is impossible to get into your store. Did they every think of that? If you make it easy for the disabled to get into your store, they will come in and buy things from you. Just as you make it easy for the able bodied to get into your store, it works both ways.

Mind controlled wheelchair coming soon

greg — Wed, 06 May 2009 14:48:35 +0000

The University of Zaragoza has developed a wheelchair that can be moved by nothing more than thought. Extensive work by teachers and students at the university has created a computer controlled wheelchair that moves by someone thinking where they wan to to go and how fast they want to go. Using a P300 nerophysiological protocol head piece and specialized software, electrical impulses in the brain tell the computer what to do. The P300 looks like a head cap with hundreds of wires hanging out of it. This is the same technology that is used to EEG’s and polygraphs to prove you are telling the truth to the police. There are several prototypes presently in testing and the university hopes to have commercial versions. The biggest hurdle is to train the person to use the chair. Each patient has different ways to think about moving around, turning, backing up, stopping and slowing down. Each has to be captured by the computer so that it can be used as a template to decide what to to. Several versions of each thought process are captured to make sure that the computer reliably performs the correct action every time. (Source University of Zaragoza)

Once trained, the wheelchair is able to do all the regular movements of a standard wheelchair, without the patient having to do anything other than think about it. This is a giant leap past trying to get a cursor to move around on a computer screen using nothing more than thought. Because computers are always getting faster, cheaper, and smaller, more functionality can be added and the chair will be able to respond more quickly to what the patient wants to do. Once the computer is trained, any task can be duplicated. With the addition of a robotic arm, the computer to grab items, pick them up off the floor, or pick things up from a table. Obviously this opens up mobility options that were impossible just a few years ago. Instead of being stuck in a chair unless someone is there to move the patient around, they can now go where they want to. After receiving a spinal cord injury, one realizes mobility is one of the most important things you can get. this wheelchair has the ability to give that back to quadriplegics and others that have limited movement of their legs and arms.

Justice Department sues apartment management

greg — Wed, 06 May 2009 14:17:50 +0000

The Justice Department said today that it is suing a Fitchberg Mass. apartment complex for ADA violations. The problem comes from a request from a disabled person that asked to be moved to an open apartment that would ease the disability. The report did not say but we assume that the initial apartment was probably above ground level and the new apartment was on the first floor. It can be very difficult oto deal with small elevators with a wheelchair let alone having toi wait repeatedly while loads of people go by in the elevator. A first floor apartment would allow fast and efficient access to cars, buses and other transportation options. However, first floor apartments are at a premium and apartment managers typically charge more for those apartments. The violation says that the apartment management refused to give the disabled person the first floor apartment and that they are being sued for ADA and civil violations. There is also a cease and desist to stop this practice and to look at any potential customers that were either turned away or forced to take an apartment above ground floor. (Source Media Newswire)

It is sad that after the ADA was signed into law we still have small minded people that are bigoted against the disabled. They don’t want the disabled around, they don’t want to see us, and they certainly don’t want our children playing with their children. It is just like what African Americans were experiencing in the 1940s-1960’s. Bigoted white people didn’t want people of color in their neighborhoods, schools, or businesses and they used all kinds of terrible legal tricks and bullying to get their way. Fortunately thy were able to get many civil rights laws in place to give them what the constitution guaranteed them – equality for all. This lawsuit is not the first and certainly will not be the last . There always seems to be people that think they can boss us around or bully us to leave their restaurant, clothing store, library or mall. While the disabled ask that we just be left alone to live our lives with families, we can and will sue anyone who dares to take away the constitution from us.

These lawsuits take years but they are a beacon showing that our rights cannot be taken away. My service dog can go anywhere I go regardless of what the manager of a McDonald’s thinks. Even if they don’t like dogs and they have someone that might be afraid of dogs, none of those are valid reasons to keep the service dog out. But they continue to try. I was told to leave a Children’s Palace because I had my service dog with me. Even after showing her the ADA sections that guaranteed I can bring Naomi ( My service dog) anywhere they still wanted me out and refused to service me so I could purchase my items. They said that in their country (Jamaica) dogs were not allowed in businesses so that was the same here. I didn’t think it was worth my time to explain to her that when she departed the airplane she was no longer in Jamaica., and the the United States has different laws that must be obeyed. After talking to the corporate office, things were fixed and that manager was moved to the unemployment office. Welcome to the 1950’s.

Healthcare reform needs you!

greg — Thu, 30 Apr 2009 01:52:36 +0000

Representatives from the Governor’s Council on Developmental Disabilities, The ARC of Georgia, the Center for Leadership in Disability, ADAPT, People First and others are in the nations capitol to meet with our elected officials and discuss the possibilities with a new administration and a new Congress. Many of you may have read or seen on television that some people with disabilities were arrested outside the White House. The reason this happened was that individuals had an opportunity to meet with President Obama’s health care czar Nancy Ann DeParle. It was expected that this staff would support the idea that any health care reform must include reform of long term services and supports. However, Ms. DeParle stated that long term services and supports would not be included in any discussions about health care reform.

Today, Wednesday April 29, 2009 over 1000 people with disabilities and their advocates met on Capitol Hill. Their message will be loud, strong and clear that any health care reform must include reform of long term services and supports. How can you help us? Call your Congressional Representative and Senator’s Johnny Isakson and Saxby Chambliss. Let them know that you support having long term services and supports included in any health care reform and that you support the Community Choice Act (H.R. 1670 and S 683) and the Class Act (S 697). The only member of the Georgia Delegation that has signed on to be a co-sponsor of either of these bills is Rep. John Lewis.

Call today, while those of us in Washington DC are on the Hill and urge your representatives to support this legislation and to make sure that long term services and supports is included in any health care reform efforts.

United States Senate http://www.senate.gov/general/contact_information/senators_cfm.cfm
United States Senate State Legislature http://www.ncsl.org/public/leglinks.cfm

United States House of Representatives http://www.house.gov/house/MemberWWW_by_State.shtml