In the News -- 10/26/2004
It's time to bring you the latest news items! Included in this month's installment are stories concerning stem cell research. There's some great reading here. Please email your comments to
comments@quadblog.com to participate in the discussion. Now on to the news.
Open the BrainGate
Businesswire.com reports on a new system by
Cyberkinetics Neurotechnology Systems, Inc. that allows quadriplegics to use thoughts to control a computer, a robotic arm, and more!
"Resistance is futile. You will be assimilated." - The Borg
Running Roughshod Over Rural Wheelers
Utah's
Deseret News has an article about the challenges that people with disabilities face in rural areas. The article focuses on the plight of one particular family with a quadriplegic daughter.
New Drug Regenerates Neurons?
San Diego's
KFMB-TV reports that researchers from the University of Helsinki say a drug therapy known as a Tri-Peptide KDI may be able to protect the brain from degenerative diseases, such as Alzheimer's, Lou Gerhig's, MS and regenerate nerve impulses in damaged spinal cords.
Three-step paralysis treatment
News 8 Austin reports that folks at the Miami Project to Cure Paralysis at the University of Miami are using a three therapies together that individually are believed to treat paralysis successfully.
Got Stem Cells?
There have been lots of news stories and articles on stem cells lately. (Be sure to
review my article on stem cells) Here is a sampling of what's being reported lately.
Stem cells: Medicine's new frontier
Umbilical Cord Stem Cells Save Lives
Stem cells from fat showing promise
Stem cells offer hope of treating blindness
Prop. 71 looks to jump start stem cell research
Differentiating stem-cell research fact from fiction
What Young People Think about Stem Cell Research
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Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
The Stem Cell Issue
by Greg Euston, Editor
New! ->
See the update at the end of this article.
Due to the current political climate and recent death of Christopher Reeve, there has been a lot of rhetoric regarding stem cells lately. As a person with a spinal cord injury, I recognized that it's important for people to understand this issue clearly, particularly if this issue's going to be a criterion when deciding on a candidate for President of the United States.
What Are Stem Cells?
Stem cells are described by the National Institutes of Health like this:
"Stem cells have the remarkable potential to develop into many different cell types in the body. Serving as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell."
The NIH describes what stem cells are, the differences between embryonic and adult stem cells, and some frequently asked questions in detail
on their web site. Their web site uses laymen's language and doesn't require a medical degree to understand, so take the time to review it. I won't duplicate that information here. You can open a glossary by clicking
here to refer to while reading this article.
Types of Stem Cells
There are three classes of stem cells: totipotent, multipotent, and pluripotent.
- A fertilized egg is considered totipotent, meaning that its potential is total; it gives rise to all the different types of cells in the body.
- Stem cells that can give rise to a small number of different cell types are generally called multipotent.
- Pluripotent stem cells can give rise to any type of cell in the body except those needed to develop a fetus.
It is the very ability of pluripotent stem cells to develop into any type of cell in the body that entices the scientific community.
Human Embryonic Stem Cells (hESCs)
Human embryonic stem cells are
thought to be pluripotent by scientists, they are not
sure at this point. To date, scientists have only been able to do experiments with human embryonic stem cells. There are some challenges regarding hESCs however. First, scientists must learn how to control their development into all the different types of cells in the body. Second, the cells now available for research are likely to be rejected by a patient's immune system.
Adult Stem Cells
Adult stem cells have been used to treat diseases for over 40 years. They are currently used to treat leukemia, lymphoma, and other blood disorders. Although adult stem cells have recently been found to have even more uses, there are currently several limitations including the fact that none have been found to be pluripotent yet, they are only found in minute quantities, and they may contain more DNA abnormalities caused by the environment.
Federal Funding
Federal funds to support hESC research have only been available since August 9, 2001, when President Bush announced his decision on Federal funding for hESC research. Before this time, there was no federal funding for hESC. However, due to ethical concerns, research has been limited to existing
stem cell lines.
A Life for a Life?
Is destroying one life worth the research? Some feel it just makes sense to utilize embryos that are currently frozen because they're just going to be destroyed anyway. I don't follow that reasoning. Let us consider a prisoner sentenced to death. If there was a way to extract stem cells from that prisoner, a procedure that necessarily kills the subject, should scientists be allowed to do so? How about this; consider the war in Iraq -- if rifles could be modified to fire projectiles that could harvest stem cells from the targets rather than simply putting holes through them, would it be ethical to use them? Heck, not even something that elaborate -- couldn't we just harvest the organs from Iraqi combatants as we kill them? Otherwise, those organs would just be going to waste, right? Think of the lives that could be saved!
The point is, just because we can do something doesn't mean we should.
Read All about It
To really understand stem cells, the potential medical benefits, and other facts about this issue, please refer to
The National Institutes of Health web site on stem cells. It has a section with frequently asked questions, the science involved, funding information, guidelines, and much more.
-- Update 10/21/2004 --
A new article just came out today by James Kelly. Mr. Kelly is an advocate for those with spinal cord injuries and is well-educated on stem cell issues. His article can be read on
this online magazine.
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Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
Keeping the Disabled Disabled – NOT
by Susan Schaffer
I ambulate in a wheelchair and drive in a van equipped with hand controls - at least I
did. I'd like to tell you the situation I am currently in; not for the purpose of airing my dirty laundry, but because I'd like us to all advocate together to bring about a solution. By helping me you're helping yourself and we're helping others, who we don't even know. We may not be able to totally stop the silent discrimination but we can stop it from being silent.
February 16, I was driving to an appointment during work and a lady decided the phone call on her cell phone was more important than the traffic light in front of her so she drove through it and hit me. My van was totaled and of course that meant the hand controls had to be replaced. If money was the only issue then $30,000.00 (cost of a 2000 Dodge Caravan with a dropped floor and ramp) and $33,000.00 (cost of a set of hand controls) would suffice. But this is not just about the $63,000.00 needed to get me back on the road. It's about the apathy regarding the helping profession and the people who are helping to make my bad situation worse. I realize that there are some really good people in the human service field, and I have met a few, but this is my experience. In general, the good people do not have the power to improve my situation.
The first step was to hire a lawyer; no easy task since my case was "a disabled case." My first lawyer quit when he decided that there would not be enough money to collect to justify his work. It took a few weeks and a few hesitant lawyers to take over the case. The second step was for my insurance company to give me the book value for the van and reimburse me for my trips to work. This was no easy task since the insurance company stated that reimbursement is only for a rental car for the month (a lot of good that would do me). I ended up getting a minimal sum of money that enabled me to buy a used van. At least I was then able to wheel into a vehicle, instead of being lifted. The third step was to order the hand controls; no easy task since there is an endless number of regulations that are developed by people who will never be personally affected by them.
I've been advocating endlessly with too many people to mention and it has gotten me endless migraines and more than half of the way. But that's not good enough, and I'm not the only person with a disability who is being kept disabled by others. I've chosen a more effective approach that I'd like your help with to implement successfully. I want to publish a book filled with the types of struggles which other people with disabilities are facing. I will then present it to people of stature such as (politicians, entertainers, athletes, etc.) who are in a position to make a difference.
Your name would be kept confidential so there would be no reason to fear consequences. Many people are afraid of getting worse service than they already do if they anger someone in the position to help them. This book will not be a hard bound book published for bookstores, merely a spiral manuscript printed and distributed to a few choice people you suggest including Montel Williams. He is the talk show host who has multiple sclerosis and champions disability causes. I wrote to him requesting that he do a show on this issue of advocacy and I wish to present him with "proof" that I am not the only person in an unfair situation (along with a few others who contribute to this book).
If you are interested, please contact me at ssschaff9@aol.com. We may not be able to stop this silent discrimination, but we CAN keep it from being silent!
Susan Schaffer educates the public on disability issues, has a masters degree from Hofstra University in Vocational Rehabilitation Counseling, and uses a wheelchair to ambulate.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
The "Other" Therapy - What Comes Next
by Chris Venus, PT
First of all, I need to say that being a physical therapist in no way qualifies me as a psychologist or psychiatrist, and I am not pretending that I have any significant understanding of all of the psychosocial issues that are presented to those with spinal cord injuries. However, working in a rehabilitation hospital gives me an opportunity to see the relationships develop between those with spinal cord injuries, their families, their therapists, and those others around them that have similar injuries. While it is most, if not all, of everyone who is injured to focus primarily on their physical deficits, often times it is the emotional and social aspects that are grossly overlooked.
Because the social and emotional aspects often are not a focus during their inpatient rehabilitation stay, it soon comes to the front after those patients are discharged home. It is at that time when support and community groups become very important. These groups enable those with spinal cord injuries to share their experiences with others in similar situations. It is in sharing these experiences and feelings that allow them to further adjust to their injury.
When I was asked to write an article for this internet journal, I thought about all of the medical and research areas on which I could touch, but none seemed more important than support groups. While support from loved ones goes a long way in recovery, it is often support from those that can sympathize with an individual’s particular situation that may provide important answers.
It is just that reason that this site exists, to be able to share life experiences with others so as to make adjustment to life with a spinal cord injury less awkward and difficult. In addition to online sites, local community groups and support groups can provide a wealth of knowledge to someone seeking answers to tough questions. Also, while a particular session may not have seemed very informative, it may be your information that you can share that can affect the life of another person with spinal cord injury. It is information about relationships, transportation, finances, equipment, and medical issues that is important to be shared at these groups. Often times, vital information is gained here that was never learned, or perhaps even offered, in a rehabilitation setting.
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Chris Venus is the Spinal Cord Injury Program Coordinator at HealthSouth Harmarville Rehabilitation Hospital, and is a licensed physical therapist.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
Teaching "Disability" to Public School Students
by Susan Schaffer
I have spent a significant amount of time on the issue of educating the public about disabilities, particularly students. It is very important to develop a forum in order for kids to ask questions and make comments specifically on the subject. I have done this in two ways - written programs and oral presentations.
One very effective way to increase awareness of disability is to visit a classroom (grades 3, 4, 5) and present the topic as a guest speaker. I start my presentation by posing some thought provoking questions and comparing the answers with those of a "normal" person. For example, "What happens when you wake up in the morning? (you get out of bed, wash, dress, eat breakfast, and go to school). "When I get up in the morning I do that too but when I dress it's by sitting on my bed because I don't stand up". I ask a few questions about other disabilities. "What is it called when one can't see?" "How does a blind person get around?" etc. I then show a short video I produced and then handout some literature. This program takes a total of 45 min.
A second effective way to increase awareness of disability is to develop lessons plans and let the regular teacher present disability as if it was a reading or a social studies class. I developed a week long unit in which teachers can choose a disability to discuss, pose thought-provoking questions, and experiencial exercises. The final unit includes a simple game testing the comprehension of the unit. There are a few worksheets also.
Regardless of which program you choose to implement, the important issue is that the subject is formally discussed. There are usually many questions discussed and the students are glad to be able to ask them. If questions aren't addressed, then conclusions may be drawn that are untrue. These may become harmful stereotypes. For example, if kids are instructed by their parents not to stare they may come to fear people with disabilities. If anyone is interested in these programs, feel free to contact me at
ssschaff9@aol.com.
Susan Schaffer educates the public on disability issues, has a masters degree from Hofstra University in Vocational Rehabilitation Counseling, and uses a wheelchair to ambulate.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
