Jun 26, 2016

5 foods that fight high cholesterol


It's easy to eat your way to an alarmingly high cholesterol level. And the reverse is true too — changing what you eat can lower your cholesterol and improve the composition of the armada of fats floating through your bloodstream. Fresh fruits and vegetables, whole grains, and "good fats" are all part of a heart-healthy diet. But some foods are particularly good at helping bring down cholesterol.
How? Some cholesterol-lowering foods deliver a good dose of soluble fiber, which binds cholesterol and its precursors in the digestive system and drags them out of the body before they get into circulation. Others provide polyunsaturated fats, which directly lower LDL, or "bad" cholesterol. And those with plant sterols and stanols keep the body from absorbing cholesterol. Here are 5 of those foods:
  1. Oats. An easy way to start lowering cholesterol is to choose oatmeal or an oat-based cold cereal like Cheerios for breakfast. It gives you 1 to 2 grams of soluble fiber. Add a banana or some strawberries for another half-gram.
  2. Beans. Beans are especially rich in soluble fiber. They also take a while for the body to digest, meaning you feel full for longer after a meal. That's one reason beans are a useful food for folks trying to lose weight. With so many choices — from navy and kidney beans to lentils, garbanzos, black-eyed peas, and beyond — and so many ways to prepare them, beans are a very versatile food.
  3. Nuts. A bushel of studies shows that eating almonds, walnuts, peanuts, and other nuts is good for the heart. Eating 2 ounces of nuts a day can slightly lower LDL, on the order of 5%. Nuts have additional nutrients that protect the heart in other ways.
  4. Foods fortified with sterols and stanols. Sterols and stanols extracted from plants gum up the body's ability to absorb cholesterol from food. Companies are now adding them to a wide variety of foods. They're also available as supplements. Getting 2 grams of plant sterols or stanols a day can lower LDL cholesterol by about 10%.
  5. Fatty fish. Eating fish two or three times a week can lower LDL in two ways: by replacing meat, which has LDL-boosting saturated fats, and by delivering LDL-lowering omega-3 fats. Omega-3s reduce triglycerides in the bloodstream and also protect the heart by helping prevent the onset of abnormal heart rhythms.
Images: iStock
For more ways to keep your heart healthy and conquer high cholesterol, buy Managing Your Cholesterol, a Special Health Report from Harvard Medical School.

Post Polio Litaff, Association A.C _APPLAC Mexico

Jun 24, 2016

Using Meditation for Post Polio Survivor

By: Susan Perlman, M.D.
University of California, Los Angeles (UCLA)

Susan Perlman, M.D. is Associate Clinical Professor of Post-Polio Clinic at UCLA. Since 1988, the clinic has evaluated and treated 600 polio survivors, with an approach combining neurological assessment, neurorehabilitation techniques, medication, intervention and consultation with associates in orthopedics, medicine, sleep disorders, psychology and alternative (complementary) medicine. The clinic coordinates the dedicated support groups in Southern California and offers educational outreach to the health care community
POST-POLIO SYNDROME is a constellation of new symptoms (fatigue, weakness, pain, cold intolerance, muscle atrophy, or new problems with activities of daily living), occurring in survivors of definitively (by history, exam or electrical studies) proven acute poliomyelitis, after a period of at least 15 years of stable recovery and performance, and in the absence of any other medical or neurological condition. It is felt to result from the weakening and loss of previously recovered lower motor neuron connections to muscle, possibly due to aging, greater fragility of the recovered nerves, or immune system dysregulation. Onset can be insidious, progression is usually slow, and treatment is most successful with rehabilitation strategies.
            - Susan Perlman, MD
Until we better understand the causes of post-polio syndrome, we will have no curative medication. At best, we can use medication to treat the symptoms and to improve the quality of life, and we can avoid using medication that could make the symptoms worse. Certain other diseases (elevated blood cholesterol levels, high blood pressure, heart disease, and cancers) require use of medications with side effects that can exacerbate symptoms of post-polio syndrome. These should be used, but with careful monitoring of the polio survivor's functioning.
Symptomatic Medication
The three primary symptoms [of PPS] that we can treat with medication are weakness of muscle, fatigue (individual muscle and generalized) and pain, i.e., post-polio pain, overuse pain, bio-mechanical pain and bone pain ( Gawne, AC, 1995). 

Drugs to reverse muscular atrophy or to improve strength by stimulating motor nerve endings to reconnect with muscle fibers (nerve growth factors) are all still experimental. They are currently being tested for use with other motor nerve diseases. Only insulin-like growth factor type 1 (IGF-1), also known as myotrophin or somatomedin-C, has been tested in people with post-polio syndrome (Miller, RG, 1997) (see chart) It brought no change in strength or fatiguability but did improve recovery from fatigue after exercise.
Human Growth hormone has been given to increase a person's natural level of IGF-1 but showed little or no improvement in strength (Gupta, KI, 1994).
Another approach has been to develop and test drugs that would protect the nerve-muscle connection from the new damage in the first place (neuro-protective agents). Again, several have been studied in other diseases, but only selegiline has been tested in post-polio syndrome, bringing some improvement in symptoms but no clear stabilization of the disease (Bamford, CR, 1993). Although many people use over-the-counter antioxidant preparations of various types, these have never been formally tested to prove any ability to slow down the changes of post-polio syndrome.
Anabolic steroids, often used by body builders to improve muscle bulk and power, have been tried by polio survivors and other persons with neuromuscular diseases, but The Medical Letter on Drugs and Therapeutics reports the side effects (risk of prostate cancer in men, masculinization in women) greatly outweigh the potential benefits.

Metabolic stimulants (L-carnitine*, L-acylcarnitine, co-enzyme Q), used to improve the ability of muscle to make energy and possibly reduce fatigue and improve strength, have also been tried by polio survivors, but have been associated with rare allergic reactions and insomnia (Lehmann, C, 1994; Nibbett, J, 1996). 
* A placebo-controlled study, as yet unpublished, recently done in Germany showed no significant difference between placebo and L-carnitine.
Specific anti-fatigue drugs can act either in the brain itself (on pathways controlled by dopamine and nonadrenaline) or by improving communication at the nerve-muscle connection. These are, respectively, central and peripheral agents. Centrally acting anti-fatigue medications include amantadine [Symmetrel], bromocriptine [Parlodel], selegiline [l-deprenyl], pemoline[Cylert], ephedrine and certain antidepressants (selective serotonin re-uptake inhibitors [Prozac (fluotoxine), Seroxat (paroxetine), Zoloft, Paxil, Effexor, etc.], which may also have nonadrenaline activity). All have been tested in other fatiguing neurologic illnesses but only the first three have been studied in post-polio syndrome. Amantadine provided no reduction in fatigue (Stein, DP, 1995), but bromocriptine (Bruno, RL, 1996) and selegiline (Bamford, DR, 1993) did. Several studies have been done using pyridostigmine, [Mestinon] a peripherally-acting drug, (Trojan, DA, 19931995Seizert, BP, 1994; Trojan DA, 1997 *) that reflected variable effects on fatigue, possible mild improvement in strength in very weak muscles and notable side effects (primarily gastrointestinal).  Read about this article 

CODIGO G "14" El pasado mes de febrero de 2009 y como resultado de la reunión anual del Comité de Revisión y Actualización de la Organización Mundial de la Salud, (OMS) que tuvo lugar en Delhi, durante el mes de octubre de 2008, la Clasificación Internacional de Enfermedades, en su versión 10 (ICD-10) ha adjudicado un lugar específico al Síndrome Post-Polio (SPP) clasificándolo bajo el código "G14" y excluyéndolo del código B91 (Secuelas de poliomielitis), en el que antes ese organismo lo consideraba abarcado Más informes

Post Polio Litaff, Association A.C _APPLAC Mexico

Dr. Jonas Salk and the Continuing Battle Against Polio

Jun 21, 2016

Switch From Trivalent to Bivalent Oral Polio Vaccine

M. J. Friedrich
JAMA. 2016;315(23):2513. doi:10.1001/jama.2016.6686. 
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While 3 wild poliovirus strains—types 1, 2, and 3—have caused worldwide disease, type 2 has not been detected since 1999, and with its elimination confirmed in September 2015, the need to vaccinate against it has abated. In April more than 150 countries and territories switched from using the trivalent oral poliovirus vaccine (OPV), which protects against the 3 strains of wild poliovirus, to the bivalent OPV, which lacks the type 2 strain (http://bit.ly/1SIFoua). These oral vaccines are made with live attenuated polioviruses.

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Post Polio Litaff, Association A.C _APPLAC Mexico

Jun 17, 2016

Nine Years Later, Post Polio Aggravation

Barbara, a 54 year old woman, called in a crisis. She had unbearable stabbing and piecing pain in both hips and had exhausted all her options. During her follow-up consult, she talked about seeing a doctor, going back on codeine and into a wheelchair, as she had been nine years ago. “There is a black cloud hanging over us,” she sighed. She saw no alternative.
Nine years ago, I had been consulted by her for post polio syndrome. Over time, using multiple daily remedies and many clearing remedies, we had successfully gotten her out of the wheelchair, off pain medications and moving freely with virtually no pain or discomfort. She had been suffering for more than 30 years at the time she consulted with me.
After this follow-up consult I told her I had to study the matter. In the mean time, she was to take MSG30C (a homeopathic remedy made from potentized Monosodium Glutamate, a food additive that is a potent neurotoxin), followed an hour later by Bryonia alba 30C. That evening at 8PM, the phone rang. It was Donna, sounding all choked up. My voicemail recorded the following message:
“You did it again, Dr. Mueller. I took the MSG, and an hour later the Bryonia,” she said with a voice full of emotion. “I fell asleep, and woke up, and there was no piercing pain, no excruciating pain, nothing.” She choked up. “I am myself again. Thank you…” She could not go on, so strong was her emotion, and hung up.
If you are interested in the full video testimonial from Barbara of her cure from Post-Polio Syndrome, please click here.

Post Polio Litaff, Association A.C _APPLAC Mexico

All Wheels Up Wants You to be Able to Stay in Your Wheelchair While Flying

By | June 6th, 2016

All-Wheels-UpThe advocacy group All Wheels Up thinks you should be able to stay in your wheelchair while you are flying, if that’s your preference. To reach this goal, the nonprofit is pushing for federal legislation to allow it, and also will begin crash testing wheelchairs to ensure flying while seated in one is safe.

First, the Legislation

The Federal Aviation Administration Reauthorization Act is wending its way through Congress, and this time around it contains four amendments addressing the disability community. One of those would require the Architectural and Transportation Barriers Compliance Board, in consultation with the DOT, to study how wheelchair users, both manual and power, could be accommodated with in-cabin restraints.
“We need everyone who uses a wheelchair or cares about someone who does to know about this bill,” said All Wheels Up Founder Michele Erwin. “If they want to fly in the safety of their wheelchairs, or want wheelchair accessible golf carts for gate transfers (another one of our projects), they need to reach out to their congressperson, tell them about this bill.”

Crash Testing Wheelchairs 

All Wheels Up has a contract to conduct the first ever crash test of wheelchairs testing airplane restraint systems at an FAA-approved aerospace facility. Erwin is optimistic these tests will go well, based on the results of previous wheelchair crash testing done by the restraint company Q’Straint.
“A large majority of the work and reports have already been conducted, regarding crash testing wheelchairs,” says Erwin. “The FAA would only need to expand on the research already done from Q’straint, whose restraining systems have passed the 20 G crash test, while all air craft passenger seats have only passed a 16 G crash test. Due to this study alone, the FAA is excited to work on the crash testing wheelchairs for commercial flight.”
Erwin will be speaking in Washington, D.C. this July where she hopes to garner more support from Congress and key disability organizations. She encourages everyone interested in this cause to get involved. “We are asking our followers to reach out to their congress people to pass the bill and tell them why these two sections are important to them.”

Jun 15, 2016

Researchers Block Action of Alzheimer’s Tau Protein in Mice


Summary: Researchers report a drug called phenylbutyrate may protect against damage caused by the tau protein in Alzheimer’s disease.
Source: Alzheimer’s Research UK.
A research team at King’s College London has used a new approach to study a hallmark dementia protein called tau in mice, revealing that a drug called phenyl butyrate can protect against damage caused by the protein.

The findings are published in the journal Brain and funded by Alzheimer’s Research UK and the Wellcome Trust.
One of the key hallmark features of Alzheimer’s is an abnormal build-up of a protein called tau in the brain, but there are several different neurodegenerative diseases that are caused by abnormal tau. These so-called ‘tauopathies’ can have a range of symptoms from memory and thinking problems to severe movement disorders.

The team, led by Dr Diane Hanger at the Maurice Wohl Clinical Research Institute, King’s College London, studied donated brain tissue from the London Neurodegenerative Diseases Brain Bank at King’s College London. They had previously identified a fragment of tau protein that was found in the brains of people with a tauopathy called progressive supranuclear palsy and wasn’t present in healthy brains.
They bred mice to produce low levels of this form of the tau protein, which they called Tau35. Despite only producing a relatively low level of the protein, the mice developed memory, thinking and movement problems that became progressively worse with age. The findings indicate the importance of the tau protein in orchestrating damage in the brain in diseases like Alzheimer’s. The researchers then studied the function of nerve cells in the mice in more detail. The study revealed that the tau fragment caused defects in how the cells get rid of unwanted or damaged proteins – one mechanism through which tau could damage nerve cells in the brain.

When the mice were eight and a half months old they started experiencing significant memory and motor symptoms. At this stage, they were treated daily for six weeks either with an injection of phenylbutyrate or sterile water as a control. Phenylbutyrate is a drug already used to treat urea cycle disorders – inherited metabolic disorders that affect how ammonia is removed from the bloodstream. Previous research had suggested the drug could target some aspects of Alzheimer’s in mice and it has also been explored in clinical studies for cancer, cystic fibrosis and neurodegenerative diseases like motor neurone disease and Huntington’s disease. After treatment with phenyl butyrate, the mice showed improvements to their memory and motor symptoms suggesting phenylbutyrate could rescue damage caused by the tau protein.

Dr Diane Hanger, said: “Tau protein is becoming an increasingly attractive target for the development of new medicines for dementia, because it’s central to several different neurodegenerative diseases including Alzheimer’s. This new approach to studying the effect of low levels of tau protein in mice helps us to recreate aspects of these diseases in a way that more closely represents what’s seen in patients. By studying these mice, we’re starting to identify key mechanisms driving damage in the brain and we hope that teams across the world can use this method to study these complex diseases and search for new treatments.”
Phenylbutyrate is a drug already being investigated for benefits in a range of conditions and it was interesting to see it may also have the potential to protect against damage caused by tau protein in mice. The findings are an important basis for future drug development studies to understand the mechanism through which phenylbutyrate may protect against neurodegeneration and whether this could point us towards new treatments. In future we’re keen to continue building on our new approach to learn more about the mechanisms driving neurodegeneration in these mice, with the aim of identifying promising targets for the development of new treatments.”
Image shows the tau protein.
After treatment with phenylbutyrate, the mice showed improvements to their memory and motor symptoms suggesting phenylbutyrate could rescue damage caused by the tau protein. NeuroscienceNews.com image is in the public domain.Dr Simon Ridley, Director of Research at Alzheimer’s Research UK, said: “The human brain is a hard-to-reach organ, making it difficult to study the molecular changes in diseases like Alzheimer’s in a living system. This study has allowed the research team to better understand how tau can damage cells in diseases like Alzheimer’s, as well as a range of other neurodegenerative diseases associated with the protein. It’s important to expand the tools researchers have to study the diseases that cause dementia, as they provide a way both to understand these diseases and to screen new drugs.
“While clinical trials in people will always be the gold standard to prove the benefit of any new drug for diseases like Alzheimer’s, research in mice is an important part of the drug development process. We must continue to invest in research to understand the biology of the different forms of dementias as well as using this to narrow down the most promising new therapeutic approaches to drive towards clinical trials.”
Funding: The study was funded by Alzheimer’s Research UK and the Wellcome Trust.
Source: Alzheimer’s Research UK 
Image Source: This NeuroscienceNews.com image is in the public domain.
Original Research: Full open access research for “Tauopathy induced by low level expression of a human brain-derived tau fragment in mice is rescued by phenylbutyrate” by Marie K. Bondulich, Tong Guo, Christopher Meehan, John Manion, Teresa Rodriguez Martin, Jacqueline C. Mitchell, Tibor Hortobagyi, Natalia Yankova, Virginie Stygelbout, Jean-Pierre Brion, Wendy Noble, and Diane P. Hanger in Brain. Published online June 12 016 doi:10.1093/brain/aww137
Post Polio Litaff, Association A.C _APPLAC Mexico

Survey of young patients with polio and a foreign background at a Swedish post-polio outpatient clinic

Original Article
pp 1-5
First online: 

Survey of young patients with polio and a foreign background at a Swedish post-polio outpatient clinic

  • Lars Werhagen 
  • Kristian Borg
Nowadays, polio survivors aged under 60 years are non-native Swedes which pose new aspects and challenges to a post-polio outpatient clinic. To analyze the medical data, walking aids, occupational, and family situation in non-native polio survivors aged less than 60 years at a Swedish post-polio outpatient clinic. Retrospective data analysis. Data were retrieved from medical records at the post-polio outpatient clinic. Actual age, age at acute polio infection, walking capacity, pain, concomitant diseases, working and family situation, and ethnical origin were analyzed. Data are presented in numbers and percentage. 153 patients were included. Mean age was 45 (17–60) years, and mean age at acute polio infection was 2 (0–12) years. Paresis of the lower extremities was the most common disability. 10 % were wheelchair dependent. Pain occurred in 70 % with a mean intensity of 55 measured with the visual analog scale. Hypertension was the most common concomitant disease. Half of the polio survivors were working at least part time, and roughly half were singles. Data were comparable with data earlier published in Swedish native polio survivors. Non-native polio survivors aged under 60 years showed similarities in age at acute polio infection, paresis, prevalence, and intensity of pain when compared with native Swedish polio survivors. They were, however, younger, and were less often working and married/cohabitants than native Swedish polio survivors. The results of this study underline the importance of social and vocational rehabilitation tailoring rehabilitation suitable for polio survivors with a foreign background.


Polio Post-polio syndrome Pain Fatigue Walking aids

Jun 11, 2016

How People with Disabilities Have Sex

Monica Heisey

How People with Disabilities Have Sex
For people with disabilities, sex and sex education remains an accessibility blind spot. Activists and educators are working to change that.
"It essentially does the thrusting for you," a voiceover explains as a man moves himself from a wheelchair to a canvas structure resembling a hinged camping chair. After he gets in the chair, it's implied, he's going to fuck.
It's not just a chair, of course. It's the Intimate Rider, a piece of sex furniture designed with spinal cord injuries (SCIs) and other forms of mobility-limiting disability in mind. The instructional video is part of SCI Ontario's expanding set of online resources for people with spinal cord injuries to learn about sex and sexuality on their own terms. Called "Adapted Sex Toys," the 42-slide presentation contains informational videos showcasing a range of sexual aids. Listed among more familiar sex accessories like feathers and floggers are a waterproof, stainproof blanket for incontinence and high-powered vibrators for areas of decreased sensation.
Being born with or acquiring a disability involves a lot of adapting—requiring one to relearn everyday activities, or learn them differently. For the more than 56 million Americans who have some kind of disability, moving through the world becomes an individualized process, one that involves the constant renegotiation of strategies. Despite strides made in recent decades to enable all people equal access to public spaces, sex and sex education remains an accessibility blind spot.
I was mortified to be talking about sex. I was more worried about, like, Will anyone even want to have sex with me?
Asking questions about sex can be uncomfortable for anyone. But for people with disabilities, it's especially difficult: When it comes to the "sex talk," most parents and educators have no idea how to answer typical questions like "How will my body change during puberty?" or "How do I get a girlfriend?" about atypical bodies. For those who have acquired a disability later in life, doctors and nurses often can't or don't feel comfortable answering questions about emotional intimacy and sexual function, like "Can I ask my support worker for help with condoms?" or "How can I achieve orgasm?" Due to a lack of resources and information, many people with disabilities are left to figure out sex and intimacy on their own, in some cases simply deciding that sexuality can't be a part of their life.
Christine Sellinger was 19 when a rappelling accident left her paralyzed from the waist down. In the four hours it took the rescue team to move her from the mountain to a hospital, she recalls bidding farewell to activities she presumed she'd no longer be able to do. "I remember thinking I'd never date again, because no one dates people with disabilities," she said.
Sellinger has an "incomplete" spinal cord injury, meaning she has some sensation and movement below her abdomen, but not much. Sellinger had back surgery a few days after the accident, followed by three-and-a-half months of intense rehabilitation. While rehabilitation involved relearning all aspects of her life, Sellinger said sex and dating rarely came up. "You're sitting there right after your injury talking about the bladder and bowel stuff, how to look after your skin, getting into and out of a wheelchair, dressing yourself," she said. "Why is sex not on that list? It's an activity of daily living. We all do it. Why are we so skittish about talking about it?"
A still from one of Sellinger's presentations. Image via SCI Ontario.
Sellinger struggled to ask social workers and nurses about sex because she was unsure whom to speak to, and she was initially more focused on the other side effects of her injury. Eventually a social worker on her rehab team popped in a DVD about sex after spinal cord injuries. "I was mortified to be talking about it," Sellinger said. "I just wasn't ready. I was too busy worrying about my legs and my life—I didn't so much care about the mechanics of sex as I did about body image, dating, that kind of thing. I was more worried about, like, Will anyone even want to have sex with me?"
Her first wheelchair was by a brand called Quickie, and Sellinger joked that it was "the last quickie she'd ever have." Ten years later, she works full-time as an educator at the Spinal Cord Injury Ontario, an organization advocating for improved service, advocacy, and quality of life for people with disabilities. Sellinger designs e-learning and online resources for people with spinal cord injuries and is passionate about improving sexual education and sexual health resources for people with disabilities. The key, she said, is to go to the source. "It sounds obvious but if you want to know what questions people with disabilities have about sex, you have to ask them," she said. "The best resources are rooted in the experiences of those who need them."
The pamphlets, online videos, and in-person information sessions Sellinger and her co-workers have designed are straightforward and simple; to create those resources, they worked methodically and non-judgmentally through the questions people with SCIs had asked them in the past. In some cases, they answered queries they've had themselves. "There's no right way to talk about sex or sexuality," says one pamphlet designed to help attendants talk about sex and sexual health with their clients. "The following tips are just to get you thinking about how to talk about sex in an attendant service relationship. They are not meant to be rules, or to tell you the way you must do it." This individualized approach makes particular sense in the disability community.
"A lot of these questions are going to be answered differently depending on the nature of someone's disability," Sellinger said. "We're trying to provide information for people to ask better questions about their specific situation, and to help them understand that this is something that it's okay to talk about."
It sounds obvious but if you want to know what questions people with disabilities have about sex, you have to ask them.
While Sellinger was telling me about a recent panel discussion she'd participated in educating nurses about sexual health and function after spinal cord injuries, her live-in partner returned from a run. "Just telling this journalist about our sex life," she joked. He did stretches on the floor throughout the remainder of our interview, sharing a few giggles with Sellinger when she brought up details like the specifics of positioning ("It can be hard to find a good one, but when you do, it's like, hoo boy, here we go.") and how they started dating ("We were friends, so he'd already asked a lot of 'how does sex work for you' questions and knew what he was getting into").
Sellinger said healthcare professionals often aren't adequately equipped to address concerns about sexual health and function. "They're nervous about bringing it up because they don't have the tools to discuss it at length, so it just doesn't come up," Sellinger said, adding that one of her focuses with SCI Canada is trying to empower nurses and other healthcare professionals with the information they need to answer questions about sexuality and spinal cord injuries in an informed way. She said that men with spinal cord injuries inquire about their ability to get an erection almost immediately. Women's questions tend to come later into the rehabilitative process and are more about romance and dating. Sellinger and SCI Ontario provide workshops and seminars, as well as online learning tools like the slideshow, to help answer these questions.
Things are arguably even worse in schools. In a 2010 Canadian Council for Learning study on the state of sex education for youth with physical disabilities, 100 percent of participants felt their education had been inadequate and educators were given insufficient resources to properly deal with the topic.
Access to education in general has long been a struggle for people with disabilities. The United States only guaranteed disabled children access to a public school education in 1975, with the passing of the Education For All Handicapped Children Act (now called the Individuals With Disabilities Education Act). The law required school districts to provide students with disabilities access to the same information and classes as their peers, while also requiring schools to provide extra equipment, personnel, or learning aids as required by individual students' disabilities.
Even if students did manage to get sex ed, it wasn't for bodies that look like ours.
But a law is not a guarantee. Tim Rose, who was born with spastic quadriplegic cerebral palsy, said his high school largely denied him access to sexual health resources. When sexual health came up in other classes, teachers sometimes asked him to leave the room.
"Sex ed was always taught in gym, the one class I got to skip every year," he said. "Even if students did manage to get sex ed, it wasn't for bodies that look like ours. Sex ed for me was mostly trial and error, a mix of getting what information I could from friends and from TV."
Rose founded the Rose Centre for Love, Sex, and Disability with his wife in 2011. Recently, he launched Disability Positive Consulting, a business allowing him to speak at companies and schools. The not-for-profit company focuses on "leveraging the lessons of disability for success in life, education and business," and provides consulting about disability positivity and sex education.
Like Sellinger, Rose figured out sex and sexuality largely on his own: "I often resorted to Friday nights on Showcase, or softcore porn on TV. My parents were understanding but I wasn't going to talk to them about how to masturbate," he said. (For the record, he figured it out just fine on his own: "With only two fingers available to me, my masturbation was and is different. It's a lot of stroking and soft touch stuff. Also, I'm blessed with incredibly sensitive nipples and earlobes, so touching them works too.") In his role as an educator, Rose said he tries to make it clear that he's open to discussing anything, including masturbation. "I try to be as easygoing as I can, and to share some of my own experience," he said. "It helps because there's no 'right' way to do it, it's just about figuring out what feels good."
Tim Rose and his wife. Photo via Tim Rose.
People with disabilities face a number of barriers to sexual health information, much of it imposed via social stigma or outdated stereotypes about what it means to be disabled. Rose, Sellinger, and doctors often complain about the persistent cultural infantilization of people with disabilities. "We as a society really need to work on the perception of people with disabilities as children," Sellinger said. "It drives me nuts—people are trying to be nice most of the time, but I get treated so different than everyone else. A lot of 'good for you's and pats on the head."
There's also the belief that people with disabilities simply aren't sexual or sexually attractive because their bodies function in a way outside the norm. Alternatively, people with disabilities can be presented as oversexed, fetishized as insatiably sexual beings with peculiar appetites. Both Sellinger and Rose have experienced the neutralizing of their sexual sides as well as being viewed as an interesting tick on someone's sexual bucket list.
"People see disability as something wrong with your body, which means it's easy to not be proud of your body," Sellinger said. "I refuse to believe, even though my body changed, that there is something fundamentally wrong with it. If you're constantly considering your body or someone else's body as broken, it's hard to see yourself as a sexy person, to feel comfortable being sexual in your body."
If you're constantly considering your body or someone else's body as broken, it's hard to see yourself as a sexy person.
What complicates sex ed for people with disabilities is the fact that the additional information or aid required varies depending on the specifics of an individual disability. Although schools are clearly making attempts to include students with disabilities in sex ed dialogue, Rose thinks it's hard to make disabled kids feel included when the lessons are geared towards their able-bodied classmates.
"People with disabilities have sex and experience sexuality in different ways, so the information presented from sex ed in schools isn't always relevant to them," Rose said. "I think now teens are going online and talking to their peers a lot more and that's great, but more can be done to close the gap in schools between the sex ed students with disabilities are getting and the sex ed everyone else is getting."
Keeping disabled people in the dark about sexuality and sexual function has real consequences. Aside from people with disabilities needing and deserving intimacy and a positive relationship to their own sexuality like everyone else, disabled children are at a much higher risk of sexual abuse than their able-bodied peers. Doctors also typically screen disabled people for STIs, cervical and breast cancer, and other reproductive health issues at a much lower rate than able-bodied people. Ultimately, acknowledging that disabled people need different information to help them learn about and experience sexual intimacy is the first step to a more inclusive education system.
"Awareness is the first piece," Rose said. "The second piece is that there needs to be a broader definition of sex for all students, even outside of sex ed, just an acknowledgement that sex doesn't always have to be penis-in-vagina penetrative intercourse. There's more to experiencing someone else's body, or your own body, or intimacy, and you can do that in different ways."
Some people will say, 'Is it really worth it if you have such decreased sensation?' And of course it is.
Sellinger and her partner, who met at university, have been together for four years. The two were friends for over a year before dating, which meant they'd already discussed Sellinger's disability and some of the more practical hurdles she'd experienced in relationships. "We'd talked about sex, so he already knew about bladder and bowel issues, that accidents can happen," she said. "It made things a lot more comfortable." The couple enjoys an active sex life. Positioning challenges them since Sellinger doesn't have the use of her legs, but figuring out new positions has been fun.
"Sometimes we'll get into a new one and it's like, 'Woah! That's a keeper,'" she said. "Having bladder and bowel accidents during sex is still mortifying. Sex is messy anyway, but that never stops being embarrassing, even if you're used to it."
Sellinger said having to figure out post-injury sex on her own wasn't easy, but it was worth it. "Some people will say, 'Is it really worth it if you have such decreased sensation?' And of course it is, because it's good for your partner, and it can be good for you too," she said. "It still fosters intimacy. It's kind of like the first time you had sex: you had to figure out how to do it, what felt good. You're basically learning how to do it all over again, but it can be an adventure, not an ordeal."

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