Every day, researchers are working hard to develop new therapies and treatments designed to treat symptoms, slow progression, and repair damage to the spinal cord. One of these treatments involves the use of stem cells.

Supporters and Detractors of Stem Cell Research

Because stem cells may have the potential to generate cells designed to replace or repair cells damaged by spinal cord injury, supporters feel it’s possible the benefits may far outweigh the negatives. Detractors of stem cell research focus on the moral and ethical dilemmas related to the fact that stem cells are harvested from embryos and fetal tissue. As a matter of fact, it’s difficult to turn on the television, flip through a magazine, or read the newspaper without encountering the controversy surrounding stem cell research and treatment.

The New Miracle Cure?

The jury is still out regarding whether stem cell treatment could be the miracle cure for spinal cord injury and paralysis. While scientists and researchers are hopeful, there just hasn’t been enough research to substantiate any particular result. Currently, most of the research on stem cells has been done on mice, which have significantly different cells than humans.

Human Trials

The political and moral debate surrounding stem cells continues to hamper research. There are also some legitimate concerns regarding the safety of stem cell research on human patients, including concerns related to the immune response to a cellular transplant. The biomedical company Geron received the green light to conduct the first human clinical trial of the treatment of spinal cord injury with embryonic stem cell transplants and drug therapy earlier in the year, but the process was recently halted by the FDA for unknown reasons.

Q: Is the United States the only country that has been hesitant to use Embryonic Stem Cells (ES cells) for research purposes such as spinal cord injury (SCI) repair?

A: As may be expected, each country has determined its own laws and regulations regarding the use of ES cells in medical research. In the United States, President George Bush mandated that any program in the US or abroad using federal funding could not produce new ES cell lines, but may use those produced before 2001. While this is law has limited some research, each state has the ability to regulate the use of ES cells by creating their own specific policies. For instance, New York and California actively pursue this research while South Dakota forbids any type regardless of the source (aborted or miscarried embryos, unused in vitro fertilized embryos and cloned embryos).

Because of a variance between ethical viewpoints in different countries, there are a wide array of laws and reasons for them. In Europe, each Member State has the responsibility to either allow or forbid the use of ES cells. France, for example, allows a case-by-case approval process while Germany forbids their use except for in some well controlled exceptions that are on ES cell lines made before 2002.

Israel, however, has a view towards this type of research that is rooted in their Jewish beliefs. They believe that up until the moment of birth the mother’s health takes precedence over that of the embryo. Also, they don’t believe that the embryo acquires a soul until after the first trimester. This allows about 120 days in which the research on ES cells are considered to be ethically acceptable to those following the Islamic tradition. They also place an emphasis on consent, respect of human dignity and the liberty of the donors.

Africa, Central Asia, Asia and South America all allow research on ES cell lines. For an excellent map of permissive countries, visit this link.

Israel National Council for Bioethics

As the survivor of a traumatic brain injury and his or her friends and family struggle to comes to terms with what has happened and what the future holds, many questions are raised. It’s helpful if both the survivor and his or her family have some general information about traumatic brain injury at this time.

Population Affected By Traumatic Brain Injury

Approximately 1.4 million Americans sustain a traumatic brain injury each year, and of these, 1.1 million are treated and released from the hospital, 235,000 are hospitalized, and 50,000 die.

The leading cause of brain injury is falls among those between the ages of 0 and 4, and those over the age of 75. Other common causes of traumatic brain injury are motor vehicle accidents, being struck by or struck against a moving or stationary object, and assaults and other physical violence. Motor vehicle accidents is the cause most likely to result in hospitalization.

Signs and Symptoms of Traumatic Brain Injury

The most common signs of traumatic brain injury are:

• Headaches and neck pain
• Difficulty remembering or concentrating
• Issues with thinking, speaking, acting, or reading
• Fatigue, lack of energy, and decreased motivation
• Changes in sleep patterns
• Dizziness or lightheadedness
• Nausea and vomiting
• Blurred vision
• Increased sensitivity to noise, lights, or distractions
• Loss of the senses, such as smell or taste

Long-term Outcome of Traumatic Brain Injury

According to the Center for Disease Control about 5.3 percent of Americans—that’s two percent of the U.S population—need help performing everyday activities as a result of traumatic brain injury. Traumatic brain injury frequently causes issues that can affect thinking, emotions, sensation, and language. Seizures that result from traumatic brain injury can cause age-related brain disorders such as Alzheimer’s and Parkinson’s disease.

A recent article in the Miami Herald brought up some questions. If you are a disabled parent, do you receive the same respect and support as parents without a disability, and if not, how prevalent is the inequality?

The story was about a mother who suffered a back injury that created a significant amount of pain, preventing her from working and leading her doctor to recommend narcotic pain pills. Because of her dependence on the medication, the court ordered her to complete a variety of parenting tasks which she failed due to a lack of financial resources. Her child was then taken away and given to the grandparents.

This situation had a few variables involved that have no relation to a disability, but it inspired us to do some research. It turns out that there are quite a few Internet and print resources that are aimed specifically at the disabled parent. Some are for women only and others offer support to both sexes. After reading just a handful of sources, it became apparent that there are indeed issues faced by disabled parents that need attention.

“Many doctors may have difficulty dealing with women who are both pregnant and disabled. We blur their categories,” says says the DisAbled Woman’s Network (DAWN), “Physicians lack models for dealing with us. Many have a hard time saying, “I don’t know how to deal with this, but I’ll try to find out as much as I can and help you as best I can.” Rather than deal with us honestly, they may urge us to abort, or be unsympathetic.”

Added to negative physician attitudes about disabled parenting are complications that arise from pregnancy that are specific to each disability. Spinal cord injuries (SCI) are already prone to cause urinary tract infections (UTI) and with the addition of a pregnancy and the strain it places on the bladder, the potential significantly increases.

DAWN also points out that there are also issues with medical equipment not being safe or properly designed for gynecology exams on those who are wheelchair dependent or who have little or no use of their limbs. In a poll that resulted in 245 respondents, DAWN found that the disabled mothers who had children experienced the following problems: 25% had housing issues, 25% had difficulty transporting their children, 33% had trouble with child care, 32% had a problem with household tasks and 33% found that social/medical workers didn’t understand their situation.

The Family-Friendly-Fun Website has something similar to say, “For too long, people with disabilities had been told that having families of our own was not an option. The truth is, though, that we have always been parents, and as our society evolves, more and more of us will have access to that opportunity.” They go on to add that “Being disabled parents in the twenty-first century is slowly starting to improve but unfortunately disabled parents are still sometimes met with discriminatory attitudes both by professional organizations, and by the family and friends of the disabled parents themselves.”

Adaptive equipment is out there, but it’s rare and considering how individual-specific each situation is, coming up with a “one size fits all” option for those with disabilities is out of the question. Certain things need to be taken into account that the typical stores seldom provide - accessible changing stations and bathing equipment, cribs and beds, harnesses to allow quadriplegics to hold their child and so on.

Luckily there are organizations that are working to not only support parents with disabilities, but also to draw attention the the unique challenges they face and how our communities can better assist them. Here are some resources to get you started:

Parents with Disabilities Online (Includes some adaptive equipment.)

Disability, Pregnancy & Parenthood (Has an online or print journal with stories of disabled parents and how they are coping.)

Disability in Pregnancy and Childbirth (A book that is highly recommended on a variety of Websites.)

Why are respiratory infections so common in spinal cord injury (SCI) patients? We’ve mentioned the prevalence before, but want to share some data we recently found.

According to the University of Washington’s School of Medicine, respiratory infections such as pneumonia, are the leading cause of death in SCI patients. Compare this to heart disease, cancer and stroke which are the main causes of death in the general population.

SCI affect the respiratory system the muscles that are needed to pull air in and push it out of the lungs are often affected by a spine injury. Without the intercostal muscles working properly, the patient is unable to effectively cough up mucus which leads to an excess in the lungs that makes it harder to breath.

There are ways to make sure the lungs are kept clear such as with the use of suction or “quad coughing”, a process that involves a caregiver pushing down on the chest to force the air and mucus out. In addition, receiving a pneumonia vaccine called Penumovax prevents some forms. As SCI patients have such a high risk for these types of infections, it’s best to be prepared with as much prevention knowledge as is available!

Organizations like Project Mobility: Cycles for Life, Inc. have been helping people with disabilities such as spinal cord injuries (SCI) gain mobility and independence with adaptive bicycles and social riding programs. These bikes have given adults and children with unique physical limitations the ability to return to or begin biking. There are a wide assortment of companies with a variety of specialized options to choose from.

Creative Mobility custom fits trikes, bikes and tandems to a person’s specific needs while Adaptive Bike helps those with hand pain or restricted hand movement better control their bikes. The Hand Cycle Store has a selection of handcycles, wheelchairs, recumbents, trikes, specialty bikes, standing frames and custom built products that fit an assortment of needs. Special Purpose Vehicles have some unique handicap vehicles - specializing in custom built conveyances that are both comfortable and accessible.

Mobility Made Easy has The Duet, a tandem bike with a wheelchair seat in front and Freedom Concepts offers a plethora of different adaptive trikes and bikes for special needs individuals throughout the US and Canada. If none of these catch your fancy, there is also Haverich Orthopaedic Cycles and Intrepid Equipment which has a handbike that you get to design yourself.

If we have left any assistive bike shops off of our list, please let us know!

Animal-assisted therapy (AAT) has been around for some time now, but we are only recently (in the last 10 years or so) seeing it branch out to document illnesses such as anxiety that are common after a traumatic brain injury (TBI) or spinal cord injury (SCI). This therapy involves the use of a trained animal to assist and comfort the patient. The most common animals used are dogs, but there have been cases of monkeys, cats, horses, fish, birds, dolphins and even cows.

Animal therapy trials have been done on patients with anxiety, paralysis, dementia, depression, hospice needs, in correction facilities and more. For those with a SCI that limits their mobility, animal interaction has been found to alleviate feelings of loneliness and isolation, both of which are often noted results if a SCI. According to a 2000 study in the Journal of Psychosomatic Research neurochemicals associated with a decrease in blood pressure increased after positive interactions between humans and dogs, another benefit in a situation that can cause a great deal of stress for the recovering patient. In addition, organizations such as the Delta Society have done their own research on the benefits of human/animal interaction as well as compiled a list of articles that substantiate this idea.

Another pet-positive article describes the link between coping with change and transition and having a pet. Learning to live with a disability such as caused by a TBI or SCI is a traumatic and often overwhelming process. The authors found that within six months of receiving a service dog participants demonstrated an increase in self-esteem, psychological well-being, community integration and also a 70 percent decrease in home aide needs. That’s a pretty significant finding.

Offering a counter-view, the Handbook on Animal-Assisted Therapy quotes a handful of studies (pg. 41) that speculate on other reasons for the benefits, such as increased exercise or socializing through walking a dog. Aubrey H. Fine, the author, goes on to point out how few of the studies performed can be concretely validated. To create a proper study, those receiving AAT would need to be taken off of any medication while a placebo group would have to be created. How can you manufacture a placebo for a pet’s affection? Fine makes a good point, but as many will attest to with or without studies offering proof, animals have added value to numerous lives. If you have pet therapy experiences to share, we would enjoy hearing about them!

We are pleased to share this guest post with our readers:

I’m Megan. I was born on May 6, 1985. I’m 23 years old and I am so thankful that I can say that. I nearly died when I was 22.

It was November 26, 2007. It was the night before Thanksgiving. My partner Shannon & I had been going through a rough financial time, but finally got back on our feet. So we decided to ask off work to visit my family in Charlotte for two days. Originally we had planned on just the two of us going the night before and having a romantic dinner out and then spending the holiday with the family. However, we learned that my sister had just recently gotten back together with her husband and we thought it would be nice to include them in our dinner since we didn’t get to see much of each other.

This soon turned into a dinner of seven because my step brother and his friend decided to come along, and so did my sister’s husband’s friend. At first the dinner was all kinds of awkward, because half of us didn’t even know the others. But, it wasn’t anything a little alcohol couldn’t fix. Soon, we were all laughing and joking and having a great time. The fun didn’t stop after dinner. We were having so much fun we decided to go next door to the pool hall. The alcohol didn’t stop there either.

It was around 9:30pm and we had a designated driver to get safely back to my parent’s house. My sister’s kids were being babysat by her husband’s dad, so we figured why not squeeze just a little more fun in there? We went back to their house to do some more drinking. While hanging out in their garage, we caught eye of the ATV. We thought it would be a good idea to hop on and ride it around the neighborhood a few times.

Shannon got on the back with me once, but was too scared so she decided not to ride it. Something you should probably know about Shannon is that she is not a risk taker. She’s more like a maternal nurturing person. She likes to play it safe and make sure everything is always okay. This night, she decided not to nag me because she knew it had been a while since we’d gotten out like this with no worries and didn’t want to ruin my fun. She stayed in the garage and chatted with the guys while I rode the ATV with my sister. We pulled back into the garage and turned it off and were ready to leave, when my sister and I decided to take it out one more time.

I remember driving it down the street. I remember my sister yelling “Slow down, Megan! You’re going too fast!” I remember U-turning to go back to the house. What I don’t remember is the wreck. All I can tell you is what Shannon and my family have told me, and try to piece it all together.

Here’s what Shannon says happened:

“I was talking to the guys in the garage, when Megan’s step brother (our designated driver) asked, ‘Do you guys hear that? It sounds like Katie yelling.’ Of course, we didn’t hear it because we were all too drunk. About 5 minutes later, he said ‘I’m going to go find out what’s going on.’ Then Megan’s sister’s husband decided to go check things out because he wasn’t back yet. I was still chatting it up and was just waiting for them to pull into the garage when the husband comes running up to us. He tells his friend to lock up his house that we had to go to the hospital. They’d been in a wreck. I laughed it off. I really had only known this guy one night, and the whole night he’d been joking around, so I thought he was kidding. When his eyes told me a different story, I knew something had gone terribly wrong.

I leaned out of the garage and peeked down the street. All I could see were ambulance lights. I cannot describe the feeling that overcame my body. I kicked off my 4 inch heels in the yard and started running with everything I had. ‘Megan, Megan, Megan, Megan’ that’s all that came out of my mouth with every single step. It was like the world stopped and everything was just swirling around me. I passed the ATV which was up against a tree. They were about 30 yards away, one on each side of the ditch. Katie was screaming ‘Help Me! I can’t breath!’ There were about 10 neighbors all standing around.

Megan was on her back surrounded by EMT. I leaped down on the ground next to her. She was lifeless. Her eyes were open but there was nobody inside. ‘Mam, you need to step back.’ Was all I was told. Nobody to tell me everything was going to be alright. I was barefoot, alone, cold, and scared to death. My everything was about to be nothing. How could I be the last one to know what happened? I could have stopped this from happening if I would have just told her to get off. I could have helped her if I was there sooner. This is my fault. The ride to the hospital was the worst ride of my life. Following those flashing lights knowing she was inside and I couldn’t ride with her, was the absolute worse feeling. Getting to the hospital and not being able to see her, was horrible. One second we were laughing and talking and hugging, and the next second, she’s gone.

I saw her being removed from the ambulance and I noticed all of her clothes were off. They had taken off her clothes. I felt so violated for her because I did not know at the time the extent of the injury. The EMT told me she was scared and drunk and she’d probably be fine. I waited for her to walk out of the ER room and come give me a great big hug. This never happened. When I finally got to see her, she looked like a corpse. She was purple, not talking, not moving. Was she going to die? That’s when the trauma doctor told me what had happened during the wreck. Her T-8 & T-9 vertebrae were wedged together. Her spine had been smashed. I had no idea what this meant because I had never had to deal with anything like this before and had no knowledge on the subject. ‘What does that mean?’ I asked him. ‘Is she going to be okay?’ I waited for his reply. When he cocked his head and scrunched his face I knew it wasn’t good.

‘She’s going to have a long hard road ahead of her. She smashed her spinal cord. She has no feeling or movement from here down.’ He pointed above her belly button. I didn’t know how to take this. I was thankful she was alive but I didn’t know what that meant for our lives. I went two rooms down to check on her sister. I first heard she had one broken rib. Then I heard she had two broken ribs. I eventually came to find out she had eight broken ribs (all of them), a broken shoulder blade, broken collar bone, and collapsed lung, all on the right side of her body. She had 2 children to care for at home. How could this have happened? What are we going to do? I have to be back at work the day after tomorrow and so does Megan. What’s going to happen? I ended up calling my boss, and getting as much time off as I needed (which happened to be a month). I still to this day cannot thank my boss enough.

The first two nights she had to stay in ICU to be stabilized. I had to spend Thanksgiving day without her. How could I eat? How could I sleep? How could I be enjoying the holiday knowing what she was going through in the hospital? Of course, she had no idea because she was basically in a coma for about a week. I just couldn’t eat knowing she couldn’t. I moved the food around on my plate and that was about it. I don’t even think I could cry anymore. I had shed so many tears in such a short amount of time my body was exhausted. This did me no good either, because I couldn’t sleep. After she finally got her own room I didn’t leave her side. I stayed in that hospital room 24/7. Sure she may not have spoken a word, or looked at me, or held my hand, but I was going to be there when she came out of it.”

That’s what Shannon has told me from day one. About a week later when I did come to, I had already had back surgery. My surgeon said it looked like someone took a sledge hammer and smashed my spinal cord on a table. They did testing and confirmed I was an ASIA A Complete. For those of you that don’t know, that means that I had no feeling, no movement, and my spinal cord was so damaged I most likely would not get any of it back. I did not see this as depressing. I try to look at life as positive as possible. It’s almost as if I already knew what had happened to me before being told. The first words to come out of my mouth that I still say to this day are “I don’t need to walk to love.” Continued »

This week’s resource of note is Palliative care.

Palliative care is designed to compliment the treatment you are receiving for illness and injuries such as traumatic brain injuries (TBI) or spinal cord injuries (SCI). The goal is to relieve the patient of pain, stress, fatigue, loss of appetite, constipation, nausea and difficulty sleeping with will result in a better overall quality of life for the person in treatment.

Those who provide Palliative care typically are part of a team that can be comprised of nutritionists, doctors and social workers. Together they work to generate a plan that will alleviate the symptoms mentioned above while giving support to both the patient and his or her family.

These services are provided by numerous hospitals and care centers across the United States. For a directory, please click here.

For an excellent description of this form of care, visit Get Palliative Care’s Website.

With the interest generated by our recent seatback failure story regarding Alyssa’s traumatic brain injury (TBI), Rich Newsome has this followup video with beneficial information to share: