Sunday, November 9, 2008

What Does Your Partner Find Sexy About YourDisability?

By Mitchell Tepper, Ph.D., M.P.H.
HSAB Affiliation: Managing Director.

This time I asked the question! I posed this to disability-focused lists and forums: What do our partners find sexy about our disabilities?

The question was an attempt to focus on sexy as a normal part of the disability experience and relationships. It seemed to me that we were getting to the point where we could not talk about being sexy without the D word popping up. Anyone who gets involved with someone who has a disability becomes suspect and is assumed a devotee. This does an injustice to all parties. The person attracted to someone with a disability automatically gets labeled as having a fetish and his or her motives are called into question. The partner with the disability is assumed unattractive, suggesting one must be unbalanced to be attracted to us. And the person who is actually sexually oriented to some aspect of a disability - whether it be a brace or a stump or a leg bag - is automatically assumed to be deviant in all aspects of his or her sexual relationships. Sexual relationships and sexual orientations are much more complex than this.

Just because someone finds something sexy or attractive about a various aspect of a disability, say a scar for example, doesn’t make him or her a devo or a deviate. I would not characterize my wife as a devo yet there are things she finds sexy about me related to my disability.

For example, there’s an indent in my hip where they took bone out for an anterior fusion in my neck, and my wife likes to feel it. I also have a wide scar on my abdomen from some surgery. It’s very smooth and she traces it with her finger. My fingers are contracted and when we were first courting she used to almost unconsciously stretch them out and massage them as we talked. Sexy doesn’t have to be just physical. It could be the way you relate. I could go on, but others have their own perspectives to add to the mix.

As expected when doing research on sexuality and disability, some people thought the question was provocative, others perverse, and still others, plain perverted. As I explained to some, the actual question really just serves as a bridge into discussions around this topic. People will interpret and react to it from their own perspective. The responses are important as they add richness to the various dimensions of our relationships.

Love is Blind
Quadlover said he has often wondered about this question and suggested maybe it is true that love is blind. For many it was. They didn’t see the disability, only the person. L&k says "My babe is 6 months new to a C5-C6 SCI, incomplete injury. I find her extremely sexy. I always have and I always will. She is the same person to me, inside and out, as before her injury. Though she can’t walk, we continue to do things together, spend time, etc. as before. That’s what really counts."

Annonymous notes, "I didn’t know the person I love before [the disability], but I have seen pictures. They are just as sexy to me now as they are in those pictures...more so maybe because of the special person they are inside and out. And gorgeous - gorgeous indeed!"

Darlene, who has cerebral palsy, asked her able-bodied partner, who replied, "Who said I found anything about your disability sexy? How about you send something in that says I find YOU sexy notwithstanding your disability."

Scooter said, "The bottom line is women aren’t attracted to me because of my chair, but because of the man sitting in it." Keith asked his spouse what she found sexy or exciting about his disability and she simply stated, "The guy that comes with the disability." "Go figure," he says.

The Whole Package
Ingrid was inspired to ask her partner, Robert, of 18 years what he finds sexy about her. He said it was "the whole package," particularly her enthusiasm, her sense of fun, her hugs, her body weight and her body color. She then asked him the opposite question: does he find anything unsexy about her disability. She thought he might mention the fact that he has to position her, but all he said was that sometimes he felt pain during intercourse because her pelvis is tilted as her hips are inverted due to cerebral palsy. Ingrid guesses that they just love each other.

Nicko was afraid this might be a very short article as sexy is not a word she connects with her disability. Her husband thought she was sexy before her accident, and he still finds her sexy. She thinks it is despite her disability, not because of it. She writes, "I think he admires my mind and spirit, because of the way I deal with problems and keep a big smile on my face. But I think he’d like the ’old bod’ back as much as I would."

Attitude is Everything
Veranda notes, "My partner says what makes me sexy is the way that I carry myself. I still wear cute and sexy clothes, faithfully go get my nails done, and every three months I get my hair colored or touched up with highlights because I believe I have no limits. And he also says [he likes] the way I still want to have a sexual relationship even though I’m in a chair. I also have a scar on my leg that he always rubs and says is sexy. To paraphrase a bit from Forest Gump, I think sexy is what sexy does."

From Greg, "My spouse likes my availability. I have MS and I get to stay home a lot. I conserve what energy I do have for spending time with my lover."

Many people related to my example of a scar. Maybe as Scooter noted it is because every scar tells a story about us. Angus has noticed that when girls rub the scar on the back of his neck their eyes light up. "Chicks dig scars!" he says.

Guys do too. Chipper wrote that her husband really likes her strong arms and the scars on her back from all the spine surgery she has had. "I find that he traces the scars on my back when he is tense and when he is aroused."

Erica was quite excited about the scar thing also: "Actually a lot of the guys I dated LOVED this scar I have on my belly right above my belly button from where they opened me up to check for any internal bleeding...They thought the scar was sexy as hell...I used to be so self conscious about my scars and now I like them."

Mishapie shared that her boyfriend with a T4 injury from eight years ago has the most beautiful arms and shoulders she has ever seen or felt. "He doesn’t understand why I’m so turned on when he flexes his arm in my hand...and now I’m comfortable enough to not be self-conscious when I touch him where he can’t feel...He’s so beautiful to me, all over."

"It’s All Bad"
There were a few out there who could see nothing sexy about disability. One person noted that there were non-disability related things about him that his wife liked, but there were no physical, mental or emotional traits brought on by his disability that she likes (or that he liked, for that matter). "It’s all bad," he said.

While we cannot do much to change the physical, I have to believe there is hope to improve the mental and emotional outlook. Our choice of our outlook on life is one thing that is within our control, and sexy is in the eye of the beholder.

For those who have questioned how anyone can find them attractive with a disability, here is your answer! Partners do find us - including things about our disability - sexy! Disabled does not equal unattractive and disability has the potential to bring out some admirable qualities. Sometimes we don’t believe it when our own partner says we are still sexy because we may feel so different from people without disabilities or from ourselves, in the case of an acquired disability. I think it is affirming for everyone to hear partners’ perspectives.

Having a disability does not mean that you do not enjoy a sexual experience anymore. Click here for more ideas of how to love yourself.

Monday, September 22, 2008

More Patients With Relapsing Multiple Sclerosis Are Disease-Free With Natalizumab:

More Patients With Relapsing Multiple Sclerosis Are Disease-Free With Natalizumab: Presented at WCTRMS
By Danny Kucharsky

MONTREAL -- September 21, 2008 -- Natalizumab significantly increases the proportion of disease-free patients with relapsing multiple sclerosis (MS) compared with placebo over 2 years, according to study results presented here at the World Congress on Treatment and Research in Multiple Sclerosis (WCTRMS).

The study, led by Eva Havrdova, MD, General Teaching Hospital, Prague, Czech Republic, evaluated the effects of natalizumab on the proportion of MS patients who were disease free as measured by clinical and magnetic-resonance-imaging (MRI) outcomes in the phase 3 Natalizumab Safety and Efficacy in Relapsing Remitting Multiple Sclerosis (AFFIRM) study.

The study randomised 627 patients to receive intravenous natalizumab 300 mg and 315 patients to placebo once every 4 weeks for up to 116 weeks.

The post hoc analyses, presented on September 18 by Dr. Havrdova and colleagues, found the proportion of disease-free patients was significantly higher in the natalizumab group compared with the placebo group.

Criteria for clinical disease-free status were no relapse and no disability progression for 12 weeks, free of MRI disease activity, no gadolinium-enhancing (Gd+) lesions, and no new or enlarging T2-hyperintense lesions.

Based on clinical outcomes, 70.6% of natalizumab patients had no relapse over 2 years compared with 43.3% of the placebo group. Progression-free status was achieved in 83.6% of natalizumab and 71.7% of placebo patients, and 64.3% of natalizumab and 38.9% of placebo patients were clinically disease-free (P < .0001, for all outcomes).

Natalizumab monotherapy significantly increased the proportion of patients with no Gd+ lesions (94.9% natalizumab vs 56.6% placebo), the proportion with no new or enlarging T2 lesions (58.3% vs 14.9%), and the proportion of patients with no MRI lesion activity (57.7% vs 14.2%) over 2 years compared with placebo (P < .0001, for all outcomes).

The proportion of patients who were free of clinical and MRI disease activity was significantly greater with natalizumab than placebo over 2 years (36.7% vs 7.2%, P < .0001).

Dr. Havrdova said the disease-free concept has not been well considered by the MS community, but should be discussed "because this goal is potentially within reach as more effective therapies are introduced."

Funding for this study was provided by Biogen Idec, Inc. and Elan Pharmaceuticals, Inc.

[Presentation title: Natalizumab Increases the Proportion of Disease-Free Patients in Relapsing Multiple Sclerosis. Abstract P62]

Monday, June 16, 2008

MS Can't Stop Bodybuilder

MS can't stop bodybuilder
Aiming for berth at world championships

Felstead, who suffers from MS, will compete in his third Canadian Bodybuilding Federation world qualifier. BRIAN DONOGH/SUN MEDIA
When you look at that picture of bodybuilder Brent Felstead, one of the last things that would pop into your mind is multiple sclerosis.

He's ripped. He's athletic. He's healthy.

He has MS.

"That's partly why I don't mind sharing the story," the 42-year-old Ottawa native said yesterday. "Hopefully other people get the hint. There's lots of people out there who come to me and say, 'Once I got diagnosed I basically gave up on everything.' That does not have to be the case. I haven't given up anything."

He certainly has not. In fact, he will compete in his third Canadian Bodybuilding Federation world qualifier tomorrow at Winnipeg's Prairie Exchange Theatre. The top finisher in each weight class will earn a berth in the world championships in Bahrain this November.

If Felstead can win his division tomorrow, it would cap a remarkable comeback that started the day he was diagnosed: Oct. 29, 1999.

"That was probably the scariest portion of my life," he said. "At that time I was almost completely paralysed in my right leg. I was partially blind in my left eye, and I lost almost all the feeling through my torso."

Felstead, who started bodybuilding in 1995, stopped training for only two weeks after being diagnosed with relapsing-remitting MS, which is the most common form of the disease. Between 2000 and 2003 he had one or two attacks a year, but they would sometimes last for months and often wiped away the muscle in the affected areas of his body.

To make sure his recovery from an attack was consistent, he would, for instance, work out his afflicted right leg as much as he could and then do the same number of reps with his healthy left.
The attacks, however, started striking with more frequency in 2004. In addition, his job with the Department of National Defence became more hectic. He had less time to work out, and it was taking a toll on his body.

"Basically I was losing ground," he said. "I was down to 160 pounds and was not nearly as muscular as I had been."

Then, in 2006, he made a decision that changed everything. He switched medication, injecting himself with Rebif three times a week, and hasn't suffered an attack since. So instead of having to constantly rebuild his muscles, he's been able to shape them for competitions like tomorrow's national championship.

More importantly, it's kept him in tremendous shape while battling a disease that can be debilitating if you allow it.

"By constantly challenging myself, by making myself do these competitions, I'm constantly making it essential for me to keep up that level of training," he said.

The physical effects Felstead experiences these days are a slight limp, and constant pain and numbness in his left hand. When his opponents see him limp, they ask him how he hurt himself training. Their initial reaction is disbelief when he tells them the truth.

To Felstead, it's just his life. He has a full-time job, two kids and a passion for bodybuilding.
"I don't allow it to limit me," he said. "That's always been my goal since diagnosis, to make sure that it interferes with your life as little as possible.

"I've done all right, and a lot of it is thanks to not giving up and keeping at it."

Tuesday, March 25, 2008

Eye Test Peers Into Heat Related MS Symptoms

Eye Test Peers Into Heat-related Multiple Sclerosis Symptoms

ScienceDaily (Mar. 23, 2008) — A bodysuit that heats or cools a patient, combined with painless measurements of eye movements, is providing multiple sclerosis researchers at UT Southwestern Medical Center with a new tool to study the mysterious link between body temperature and severity of MS symptoms.

Monday, March 10, 2008

Study – MS Brain Atrophy

Patients with multiple sclerosis (MS) develop irreversible CNS tissue injury, the end result of which is brain and spinal-cord atrophy. Atrophy was thought to occur late in the course of MS because, despite periodic relapses, patients function normally for years after symptomatic onset of MS.

For the full story click here.

Monday, March 3, 2008

Don't make excuses for not living healthy life

Regular aerobic workouts that are vigorous enough to raise the pulse and respiration rate will result in increased fitness, improved bowel and bladder control and has been shown to reduce depression, anger and fatigue.

Click here for the entire article.

Monday, February 11, 2008

Determination Helps Natalie Carda Inspire To Achieve In Spite of MS

When you see Natalie Carda in her home town of Beresford, dribbling down the basketball court at the University of South Dakota, or coming straight towards you in life, you’ll see one common characteristic – determination.

Carda grew up in South Dakota with her Mom, older brother, and her basketball coach Father. “I’ve been playing basketball since I can remember”, says Carda. She has always felt comfortable as she stepped onto the court and excelled in basketball. With a head of steam she stepped into college life with excitement and ease. She was not prepared, though, to step in to a new role; the one that life handed her.

In her Freshman year in college Carda started feeling numbness in the top part of her body. “I have a bad back so I just thought it had something to do with that. You know, anything to explain why it was happening, then it went away so it wasn’t really a big deal.” She continued explaining that it only happened twice that year and it went away so everything must be fine.

The next year, as she was getting up out of her bed she fell, landing hard enough to jar her back. That incident, again, was explained away by back problems. At the beginning of this, her Junior year, her back tightened up and her entire right side went numb. Carda’s Trainer was concerned that more was wrong than her back and had her see a Doctor, who was concerned that these were signs of Multiple Sclerosis (MS). He promptly did an MRI which showed lesions on her brain and sent her to a Neurologist who confirmed the diagnosis. Carda remembers, “I didn’t really know what MS was. I had heard of MS and knew that it wasn’t very good.” She talked herself into thinking it was just another little problem and denied the diagnosis. When her Neurologist explained he was 100% sure it was MS then she wanted to know more about what MS was.

"It was scary at first but when I learned more about
how it wasn’t as scary as everyone thought it was,
it was a lot easier to take."

Her team mates did not say much to her about the diagnosis. They did not know what to ask her because they did not know what it was or how she would react. “They did not want to reveal that they were ‘freaking out’ so I wouldn’t ‘freak out’.” she explained. “You get nervous about things you don’t know about and we didn’t know anything about MS.”

There were more questions than answers. Carda’s Mom has done a lot of research since Natalie was diagnosed and participated in different educational options provided by the MS Society. Information is power and the more they know about and understand what MS is the easier it is to deal with. Her Mom has done a lot to learn as much as they can about it. Carda and the entire basketball team were invited to attend a presentation by the MS Society that will help answer some of the questions they have, and some they may be afraid to think about or ask

As far as her basketball career Carda explained, “At first, with the new medication, I would get very tired – I wanted to sleep all day. I essentially had MS in my Freshman and Sophomore year and played right through it so it really doesn’t seem much different now. I haven’t really seen a dramatic affect on basketball at all.”

Carda was not sure what she wanted to major in but since being diagnosed with MS she has focused in on Nursing, specializing in Neurology. “I think getting MS was a sign that I should go into Nursing and help other people.” Her future has come into focus also. “I see this as a life perspective change.” She wants to live life to the fullest and help people understand more about the disease. “It doesn’t have to change everything that you do. I thought basketball was going to be over and it’s not and I plan on achieving the other things in life like getting married and having kids.”

The positive attitude this 21 year old has seems to be contagious. She is surrounded by people who also have a positive attitude and they help her get through tough times. Her Dad, with the Coach inside him, continues to tell her to ‘get back out there and keep playing hard’. “I do not want anyone to feel sorry for me, at all”, said Carda

With her positive attitude, being surrounded by family and friends, and strong determination this young athlete will learn how to play the new ‘game’ and win. For further information about achieving in spite of having MS click here. You will find up-to-date information about MS and others who inspire to achieve.

Wednesday, February 6, 2008

Technology Plays A Critical Role In The Lives Of People With Multiple Sclerosis

Technology is available for persons with disabilities to be able to use the Internet, listen to books instead of read them, speak versus type, etc., etc., etc. Do what you can to reach out and become part of the online community.



Few Use "Accessible Technology" To Overcome Disease-Related Challenges

According to a new survey of 2,390 Americans with MS, technology plays an important role in helping them live with the disease. But the survey also showed that relatively few people with MS use special tools known as "accessible technology"-such as alternative computer mice or voice-recognition software-that could help them overcome disease-related challenges.

Monday, February 4, 2008

Yoga And MS

Interesting article on a study of individuals who have MS practicing yoga .



Yoga Study for Multiple Sclerosis
February 1st, 2008

The purpose of the workshop was to investigate yoga’s effect on the functional abilities of an MS patient to maintain an active and fulfilling life.

Thursday, January 31, 2008

Scientists Find Genes To Predict Who Is Likely To Get MS

We are aware of the fact that genes play a major role in MS but this article talks about knowing who may be suseptible to getting MS.



Multiple Sclerosis (MS) Linked to Genes

Scientists have recently pinpointed genes that can predict who is more likely to get Multiple Sclerosis (MS). MS is thought to be an autoimmune disease, meaning the body attacks itself, and to date it affects approximately 400,000 Americans.

Wednesday, January 23, 2008

Incredible News Video - Stem Cells Fight MS

Just click on the link. The clip is about 12 minutes long but very interesting.


Optimistic Attitude Wins Award

MS presents different challenges to each of us but with a positive attitude and perseverance this gal enjoys her life. I hope you are anjoying yours, too.



MS doesn't hinder mom's optimistic attitude

Shirley Busch is an optimist. Like everyone, the St. Ann resident has had her share of challenges and disappointments, but she handles them all with an upbeat attitude and positive outlook.

Monday, January 21, 2008

New Machine May Help MS Patients With Mobility

This link shows a video of the man on the machine, an article, and information about a study that is looking for participants.



New Machine May Help MS Patients With Mobility

One of the biggest effects a multiple sclerosis patient faces is loss of mobility. The machine that has helped him is called the Lokomat.

Wednesday, January 9, 2008

MS New Years Resolutions Suggestions

She's had MS for 30 years but has continued to live her life to the fullest. Read her inspirational new years resolution suggestions.




Don't Let A Chronic Disease Disrupt Your Life

(NAPSI)-When it comes to resolutions, many people vow to lose weight or stop smoking, but for people living with a chronic disease, such as multiple sclerosis (MS), resolutions take on a new meaning.

Every hour of every day, someone is diagnosed with MS. While MS is a chronic and disabling disease of the central nervous system, many people with MS continue with their normal daily lives--work, spending time with friends and family, and the activities that they enjoy.

Rosalind Joffe, 56, who lives in Newton, Massachusetts, has been living with her MS for nearly 30 years. After being diagnosed, Joffe decided to take charge of her future. It's what she has done since that moment that makes her story an inspiration for the more than 400,000 Americans, mostly women, who have MS.

Building on her experience of living with a chronic disease Joffe founded her own executive career coaching business. She is dedicated to helping others with a chronic illness develop the skills they need to succeed in their careers. Joffe firmly believes that living with a chronic disease does not preclude living a full and successful life.

"I've lived with multiple sclerosis for 30 years and I believe I am healthy and as active as ever because I made the decision to turn this disease into a positive," says Joffe. "I created my own business dedicated to helping others become successful in their careers," says Joffe. "I also chose a once-weekly effective therapy that fits my active lifestyle."

Finding that right solution for Joffe didn't happen all at once.

"For two years, I took Copaxone (glatiramer acetate), a daily injectable treatment, but the injection site reactions on my skin became unbearable," explains Joffe. "After discussions with my neurologist, I decided to switch to once-weekly AVONEX (Interferon beta-1a), which I have now been on for over seven years."

Most people with MS are diagnosed between the ages of 20 and 50, but the unpredictable physical and emotional effects can last a lifetime. Symptoms of MS range from numbness in the limbs to paralysis or loss of vision. While disease progression, severity and symptoms in any one person cannot be predicted, advances in research and treatment are giving hope to those affected by the disease. Rosalind's experience has been positive due to her personal decisions, but please note that individual experiences may vary.

"The goal of treating your MS is to reduce the physical disability and progression of the disease," says Joffe. "That's why it is so important for people with a chronic disease to find an effective therapy early that they can start with and stay on for the long run. Knowing that my MS is under control allows me to focus on what I love--helping others with a chronic disease be successful in their careers."

To create a positive outlook, Joffe suggests people living with a chronic disease to consider adopting the following resolution tips:

• Ask for what you need to do your job successfully. This is not as easy as it sounds, but it is also not as difficult. Make a list of what you can no longer do and figure out what would make a difference and is a reasonable request. Develop a plan by identifying who it would affect and what it would take to accomplish.

• Explore what you can do differently. Sometimes, you just cannot do the activities you once did--whether it is in the workplace or at home. You might need to "reinvent." In the workplace, it might mean a different job in the same organization, a different one within the same industry or an entirely different job that capitalizes on your talents, hobbies and skills. At home, it might just be a different way of performing an activity.

• Find the strengths you thought you never had. Sometimes, we need to push ourselves a little harder to see that there are reserves we did not think we had. Too often when you live with a chronic disease such as MS, the disease can seem so overwhelming to face. Surround yourself with positive thinkers so that your spirit rebounds.

Another resolution suggestion Joffe offers is, "pay attention to yourself and find that place in yourself that can balance your priorities in life with those of everyone around you."

Monday, January 7, 2008

Incontinence Study Seeks Participants

A medical research study is now underway to determine if an investigational medication is safe and effective for reducing the frequency of urinary incontinent episodes in individuals with MS or spinal cord injury (SCI).

Read the full story here.

Sunday, January 6, 2008

Bone Health In Adults With MS

It is essential to have healthy bones. Falls are common with lack of leg strength and balance. Here is a good article focusing on bone health.

Achieve In Spite of Having MS!



It is probable that those with Multiple Sclerosis are at a higher risk of vitamin D deficiency than those without MS and this may be a factor in the poor bone health of people with MS. This is possibly worse in more severe cases of MS. This appears to be independent of dietary intake of vitamin D. Further investigation is needed into the reasons why. For example, is it a result of reduced absorption, reduced synthesis or increased metabolism?

Large clinical trials are needed to ascertain the effect of increasing dietary vitamin D particularly on bone health, but in the meantime it would be prudent to ensure dietary intake meets the recommendations for other at risk populations i.e. 10mcg/day.

There is insufficient evidence from clinical trials to show that supplementing with vitamin D will directly improve the severity of the condition of people with multiple sclerosis. Larger, well designed clinical trials are needed before any recommendation can be made.

However, it could be argued that the symptoms of this side effect of MS, specifically poor bone health, could be improved with consumption of Vitamin D. Taking vitamin D in its active form carries a high risk of adverse effects, such as raising levels of calcium in the blood and should only be done under medical supervision. Therefore, it may be more prudent to discuss increasing your dietary intake of Vitamin D within food with your health professional.

So where can you go to find reliable information on how nutrition can help mitigate the risks associated with Multiple Sclerosis? The internet provides considerable resources to enable this to happen. However, one needs to be careful as there are many spurious sites with information that is mainly geared towards selling vitamin supplements etc.

I would advise that you check the credibility of any sites offering nutrition advice by determining who has compiled the information. Only accept information from sites that have engaged Registered Dieticians, or qualified doctors (preferably neurologists) to compile their knowledge. It is important that you test this by seeing if the site has a link to the organisation that the health professional is registered to.

If you come across a website that has been compiled by “one man and his dog” or is offering a “one size fits all solution”, and there is no way to validate the quality of the information, I would suggest you ignore it, as it may cause more harm than good.

The charitable institutions are a good first port of call, such as The MS Society or the National MS Society. There are also other organisations on the internet that have credible and evidence-based information available on how specific nutrients help or hinder the management of Multiple Sclerosis. I would suggest that you conduct a Google search using the following search terms: food for MS or food for Multiple Sclerosis. You’ll be glad to know that our site will soon be amongst the search results.

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