Vicki

MS, My Symptoms, and Me

2008-07-05T01:23:00Z

Multiple Sclerosis - many scars - is characterized by many different symptoms, and not every MSer has them all. In addition to that, many MSers have symptoms that are not necessarily caused by the MS. Whether the symptom exacerbates the MS or the MS exacerbates the symptom, MS often adds its own special twist. Let’s look at a few symptoms that, though not exclusive to MS,seem to be commonly combined with MS.

Restless Leg Syndrome
Restless Leg Syndrome (RLS) has been in the news recently. TV viewers know RLS from commercials and as fodder for many comedians. I never thought it was very funny, but it is a frequent joke topic. The commercial describes discomfort and involuntary leg activity, even in sleep. A recent article, MS Patients at High Risk for Restless Leg Syndrome, says researchers in Italy believe there is a relationship between MS and RLS. Although RLS is not exclusive to MS, MSers are at significantly higher risk than the general population of developing RLS.

Fatigue
Fatigue occurs in people who don’t have MS, and it may be attributable to factors such as aging, menopause, anemia and depression. Chronic Fatigue Syndrome is recognized as a debilitating condition affecting up to four million Americans. MS lassitude is distinguishable because it is particularly draining. About 80% of MSers have fatigue which is the most frequent cause of their leaving the workforce.

Temperature Sensitivity
Extreme temperatures may heighten problems causing rapid loss of control and balance. Luckily, these symptoms are generally not permanent and the problem relaxes after temperature correction.Blurry vision, known as Uhthoff's Sign, usually clears up with cooler temperatures or a cool cloth on the face and forehead. But temperature sensitivity is more than just heat. Extreme cold may cause an increase in spasticity. The temperature has to be just right.

Spasticity
Spasms are common with MS, whenmuscles tighten and make sudden movements, especially the arms or legs, difficult or uncontrollable. Here is a site dedicated to understanding spasticity regardless of the cause. It includes galleries of people who tell their stories. In this gallery, three of the presenters are MSers, Deanne, David, and Barbara.

Vision
MSers are vulnerable to the many vision impairments that lead to glasses and contacts, just like everyone else. However, it is not unusual for all types of other vision difficulties to accompany MS, from simple fuzzy focus, to Uhthoff's Sign, Diplopia or double vision, optic neuritis, and even blindness.

Are there more of these symptoms that sneak into the already crowded MS list? Probably. Jean Martin Charcot said, "Symptoms, then are in reality nothing but the cry from suffering organs." Organs in an MS body are already suffering, and maybe they are just crying out for attention.

Computers and Ability

2008-07-03T02:30:00Z

If you are disabled and you use a computer, there might be something to help you use the computer better or easier. Here is one place to look for adaptive or assistive devices or programs.

Dan J. Gilman experienced a spinal cord injury in 1972 and later became certified as an Assistive Technology Practitioner. He developed a web site Abilityhub.com that provides information on equipment and alternative methods for accessing computers.

There are alternatives for the mouse and keyboard, programs that magnify or read aloud text on a screen, and more. Ability Hub also offers consulting services. Beyond the computer, information is provided for electronic aids for daily living to interact with things such as TVs and lights, often by voice commands. Interested? Check it out.

Hate Targets Disability

2008-06-28T07:55:00Z

Garry asked the question, "Who could hate the disabled?" Well apparently someone does.

He uses data visualization to show patterns of hate crimes against people with disabilities. He used FBI data broken down by type of crime. Take a look.

Facing Change

2008-06-28T02:11:00Z

Charles Darwin did not have MS. What he did have was a theory of natural selection. Often his theory is summarized as “survival of the fittest;” however, he was not referring to brute strength. Darwin said: "It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change."

One thing in life is certain -- there will be change. Change can be difficult, but it can be very exciting, too. Whether it is good or bad depends on how we respond and adapt. It takes innovation, but it especially takes attitude.

In the case of a life interrupted by a new disability, the change is drastic, and the attitude determines the level of survival. After the realization that life has forever changed big time, you think "Why me?" As you are working through the stages of grief, you are also learning to live with an entire new set of rules, with fewer abilities than you had before, and maybe with new and different abilities. Then somewhere along the path you may think "Why not me?"

I have heard many people say they were actually grateful for the catastrophe that changed their lives. No, it isn't as if they were tired of walking or seeing or living without pain. Rather, they are grateful that the change in circumstance developed into a change in priorities and a change in outlook. The most important thing in the world shifted from one thing to another; and the remainder of life is no longer infinite in time or possibilities. The new priorities are good ones, the new possibilities are more focused, and time is more appreciated than ever before.

Gratitude for a disability may be too much to expect, but there is something to be said for a positive attitude. The positive attitude, the continued hope -- that is the courage of living with a disability. When facing even a trivial disappointment, many people, disabled or not, lose their will to continue their trek.

Some people, when faced with a lifetime of living with a disability, just give up. I think most people consider doing it at first. Remember even Christopher Reeves said he just wanted to die in the beginning. Instead he helped increase disability awareness, continued to work in motion pictures, spearheaded a program fighting paralysis, and was able to enjoy and participate with his family and friends for years. I saw him speak about stem cell research, and he finished with a smile so sincere and heartwarming that shouted his pleasure with that work. He was Superman.

Every person has interests, passions, and talents. One person can lead a revolutionary change or simply touch one heart, soul, and mind to lead a powerful life. Change will come in everyone's life in one form or another. For some, that change is in the form of a disability. Some will just quietly give in and go on. Others will have an instinctive ability to respond, manage that change, and become stronger. We all benefit.

I know about daily life with MS. If there is one thing certain, it's the unpredictability. Living with changing stages like exacerbations, flareups and relapses, we quickly learn we cannot predict what the change might be, how long before it changes again or changes back, or partway back; we just know there will be change. MSers have great opportunities and plenty of practice developing responding skills. I have to believe that is true for other conditions as well.

If responding to change is the earmark of the fittest using Darwin's definition, people with disabilities may have an advantage after all.

Marijuana and MS

2008-06-21T10:49:00Z

Marijuana. It just won't go away. Maybe there's a good reason. Medical marijuana in one form or another - pills, cannibis, hemp, mouth spray - has been a topic of discussion for years in many medical communities, including MS. It is on political agendas of a handful of states, but it is difficult to obtain. Anecdotal evidence provides most of our information in the United States because laws and wide-spread drug anxiety have limited official research. A small number of MSers embrace this...(read more)

Keep Going and Going

2008-06-14T18:17:00Z

Energizer Batteries has taken a page from its cute pink bunny who keeps going and going. They decided people who keep going deserve rewards. This year the ten Energizer ® Keep Going® Hall of Fame finalists include people with disabilities who are definitely not disabled.

Here's the story: Energizer Holdings is a consumer goods company specializing in portable power -- batteries. We all know about the Energizer battery and its icon, the persistent, determined pink bunny beating the bass drum. Energizer thought it would be a good idea to highlight people with the same "persevering, never-quit spirit" as the bunny. In 2006, they started a search for people who are as remarkable as the ever-going pink bunny and decided to showcase them in a hall of fame.

The ten 2008 Energizer® Keep Going® Hall of Fame finalists include ten remarkable people:

Ironman athlete
Bone marrow donor fund raiser
Autism educator
Inner city concert violinist organizer
Violence prevention advocate
Crossing guard neighborhood activist
Educator extraodinaire
Breast and testicular cancer advocate
Foster care children advocate
Motivational speaker

Read their stories to see how remarkable they actually are. The group includes two amputees, a young leukemia patient, the mother of an autistic child, and others who saw situations that needed improvement and stepped up to the task.

I first learned of this award when I read Ron's story in the current issue of Amigo Mobility's newsletter Friendly Wheels. His positive attitude grew from his parents' words: "What happens to you is not important; how you handle it is."

That same attitude is echoed throughout the finalists' stories. When they saw a need, each did something to answer the problem, making a difference across the nation or close to home.

One woman saw gang violence in her neighborhood and built violence prevention programs that reach over 45,000 youths. A crossing guard ensures the kids in her neighborhood are safe and that they each feel important. A young boy saw a need for bone marrow donors and raised awareness -- and funds -- by using his bald head for advertising. The mother of an autistic child found her art was helping her daughter communicate, so she now uses it to educate and spread awareness about autism. A young woman who grew up in the foster care system is now focusing on improving that system. The first double-amputee to finish the Ironman triathlon with prosthetics started a foundation to help and educate wounded soldiers and challenged athletes.

There are so many stories, and each of them is awe-inspiring. These remarkable people show what can be accomplished with the right attitude. They saw something that could be better and did what they could to make the world a better place.

Read their stories and vote once a day for your favorite hero. Each vote cast provides $1 to the Cal Ripken, Sr. Foundation to introduce underprivileged kids to baseball. Then,decide to be the best person you can be. You may start a global movement for change or you may show other people how to reach for the best they can be. If you touch a million people, a thousand people, or just the teenager next door, you have done your part. Send your own personal Keep Going Award sanctioned by the bunny himself. That one little effort may be the thing that inspires others to keep going.

Osteoporosis and Me

2008-06-08T04:02:00Z

Bone health is important, and a chronic condition like MS makes it even more important. Strong bones are crucial to our health, our daily lives, and our overall quality of life. For me, the story is personal.

Osteoporosis does not discriminate. It does happen to little old ladies, walking bent over, who break their hips when they fall. Historically, it's been a normal part of aging in women. However, the truth is that osteoporosis sneaks up on energetic, active people like Sally Field and me. And it sneaked up on 10 million other people in the United States. Wow.

Among those millions are all types of people, mostly women, but men, too. Many of them also have chronic conditions and disabilities, like me. I have MS, and my osteoporosis is severe, described as "off the charts." Each jostle is a new breakage opportunity, and my bones are extra breakable.

Although Osteoporosis is common in women my age, apparently it is more common and more serious when combined with MS. MSers tend to develop osteoporosis sooner, its progress is faster, and it is likely to be more severe than in the average post-menopausal woman. A Health Care Industry article emphasizes the relationship between MSers and low bone mass density. Limited physical activity and steroids, frequently associated with MS, aggravate the risk.

Bone health is not generally listed as a symptom of multiple sclerosis, but there is a definite, recognizable relationship. MSers are at increased risk of developing osteoporosis, and I have to believe that is true for other chronic conditions as well. As I was surfing on Disaboom, I found several posts questioning a relationship with cerebral palsy (CP). It makes sense to me. Osteoporosis develops earlier in MS and maybe other chronic diseases, so we must be vigilant and check our bone mass. It may be lurking already.

The most commonly recommended preventive and treatment strategy is weight-bearing exercise. So all we need to do is walk 20 minutes a day, but for some of us, our awkward gaits and wheelchairs get in the way. Hmmm.

Doctors Bowling and House wrote an article last year on Disaboom about hidden conditions such as osteoporosis when coupled with MS. They pointed out that the problem is not only that MSers are vulnerable, but that health care professionals often overlook it.

The message is take the initiative, ask for a bone scan and follow the recommended diet and vitamins for good bone health - both men and women and even children. It is true that osteoporosis affects people, mostly women, in later life --

About 85-90% of adult bone mass is acquired by age 18 in girls and 20 in boys. Building strong bones during childhood and adolescence can help to prevent osteoporosis later in life.
Women can lose up to 20 percent of their bone mass in the five to seven years after menopause, making them more susceptible to osteoporosis.
Of the 10 million Americans estimated to have osteoporosis, eight million are women and two million are men.

The path to osteoporosis starts early. Peak bone mass is reached around 20, so nurturing bone growth in infancy and adolescence is critical. The job of maintaining that mass never stops.

The moral of this story is: Bone health is important, and a chronic condition makes it even more so.

Here are some links to more information:
National Osteoporosis Foundation
Prevalence of Osteoporosis By Race and Ethnicity

The Diving Bell and the Butterfly

2008-05-30T20:11:00Z

This is about a movie available on DVD, but it is not just a movie. It is based on a true story that touched me personally.

The Diving Bell and the Butterfly tells the story of a high-powered business man, vibrant and active in the fashion and publication field, who had a stroke and is rendered helpless and unable to communicate. The only part of his body he learns to control is a single eye - he can blink only one eye. Of course, the story is inspiring -- he doesn't give up -- but we have heard that story before. There are other parts of the movie that inspired me beyond the standard tear-jerker. I need to talk about those.

Jean-Dominique Bauby, known affectionately as Jean-Do, was the editor of Elle magazine when he had a stroke and awoke in a rehab hospital unable to move, unable to talk, totally dependent on his medical caregivers for his every need, yet unable to tell them what he needs. However, he is fully conscious and understands what is happening because the medical staff talks to him as if he can. He is able to learn to communicate, using his one blinkable eye.

His nurse Henriette devises a plan where she says one letter at a time until he blinks, indicating that is the letter he chooses until he spells the word he wants to say. It was clever of her to devise this plan. It was ambitious for her to undertake it. When she approaches Jean-Do with the idea, we see some anger and frustration. He doesn't want to do it, he is angry because there is no other way, and she balks at his refusal and walks out. She returns, they apologize, and they get started. I have to believe the actual anger/frustration was more than a single five-minute incident, but the important point is they got over it. They work together honing the communication method and become comfortable with it.

Before the stroke Jean-Do had a book contract, and decided to use his new skill to honor the contract and write about his experiences. Enter a new woman in his life, Claude, a scribe who would take dictation, one letter, one blink at a time. Imagine the patience it must have taken to write a word, then a sentence, a chapter and an entire book blink-by-blink. All of them showed incredible patience and strength -- the nurse, the blinking dictator, the scribe, and the family and friends who stayed by his side as he shared his thoughts. Many people would have made him comfortable and left it at that. Henriette, then Claude, stayed with him beyond the expected, painstakingly reciting letters, improving his quality of life with a purpose and hope. They are heroes.

The story is told through his eye with narrative by Jean-Do to lead the viewer. It is often interrupted by images of the Diving Bell, a rigid deep-sea diving suit that holds him captive, and images of butterflies free in a beautiful meadow. These images represented the prison of his paralysis and the freedom of his thoughts.

Before the stroke he had a family life as well as a love life outside the family. We travel through his memories, his thoughts of the pretty women around him. He flirted with them as he chose letters, he was not shy when looking at them, and then his imagination created a sensual dinner date with his scribe. His paralysis did not prevent his affair with Claude; it stole his mobility, but his memories and imagination let him keep his spirit.

There are also small snippets throughout the movie that illustrate Jean-Do's plight.

- It is night and an orderly is finished cleaning the room. As the orderly leaves, he turns off the TV and says "goodnight." Jean-Do was watching a football game that was on the TV and it was turned off amidst his silent urging to the player to kick the ball for a goal! The orderly left the room ready for the night unaware that he had denied Jean-Do the game's final minutes.

- Jean-Do was becoming accustomed to his new living arrangement when the nurse took him outside. On the way to the veranda they passed mirrors and Jean-Do saw himself for the first time since the stroke. His face was barely recognizable, even to him, and he was intensely horrified by his own image.

- It took some time after the stroke before he would let his children visit. He did not want them horrified as he had been and he could not reassure them. When the time came, they met at the beach and he watched them play. They were not repelled by his unmoving, twisted face and slumped torso. He was still their daddy, and it was clear they loved him, even as his son wiped saliva from his chin.

It was a lovely movie and an inspiring lesson. Had Jean-Do seen the movie inspired by his book, I think he would have been proud. When I begin to feel frustrated by my limitations, my own paralysis, I have to remember him. As long as I have my mind, I still have butterflies.

For more about the movie, here are two reviews:
Roger Ebert
Rolling Stone

Caring for the Carers

2008-05-24T21:03:00Z

Nursing is an art: and if it is to be made an art, it requires an exclusive devotion as hard a preparation, as any painter's or sculptor's work; for what is the having to do with dead canvas or dead marble, compared with having to do with the living body, the temple of God's spirit? It is one of the Fine Arts: I had almost said, the finest of Fine Arts. ~ Florence Nightingale

Nurses are paid for their work in the fine art of caring for people, but not all caregivers are on salary, and many do not have the luxury of time off to regain strength and energy for this strenuous task. Family is a great resource for caregivers, many of whom are unpaid full-time carers.

Often people become caregivers, not as a professional choice, but as a result of family circumstance. A spouse, a parent, a child or favorite relative may have an accident or illness that results in the need for a part- or full-time caregiver. Family members are great for this role. They often want to help anyway, and what better way than to help with daily life activities and become a caregiver?

Caregiving is a major commitment that takes time, energy, and patience and is personally rewarding. Nevertheless, it takes a major emotional toll. Everyone needs a break sometimes and especially the untrained caregiver who took the job for love. Caregivers may not be chronically ill or disabled, but they are still trapped by some of the same restrictions. Some are on call ALL the time and cannot take off without risking the health or safety of their cared-for loved one.

Being a caregiver for a chronically ill person is a burden. Using my condition as an example, I found research that shows MS caregivers experience high levels of distress and low quality of life. A highly stressed caregiver is not a healthy person and is likely to make a mistake. Caregivers deserve a break and hopefully it comes before they reach their breaking point, but that break requires more than just a schedule note. The support system, in turn, must be supported.

The:Lifespan Respite Care Act was passed by Congress and signed into law in 2006 authorizing funding and training for respite care. The intention was to strengthen these support systems and to improve the relationship between the caregiver and the care-receiver by revitalizing and avoiding burnout. The act has been approved, but the funding is yet to be provided.

This year, an amendment to the Senate Budget Resolution was passed in March reserving $53 million for Lifespan Respite programs in the Federal Budget, but that does not guarantee the funding will make it to the final cut. We need to remind our senators and representatives that this funding is important to keep our support systems viable. The National Multiple Sclerosis Society (NMSS) has offered a helping hand for those who want to contact their representatives in the House and Senate. Using a zip code to pinpoint appropriate recipients, a page provides standard text as well as space to enter a free-form message.

Some of us in the disability community require carers so we can continue to live ndenjoy our lives. The irony is we have to take care of our caregivers so they are strong enough, physically and emotionally, to continue caring for us. Funding for the Lifespan Respite Care Act is one way we can support our support system.

For more information, check these links:
Lifespan Respite Care Act signed into law Dec. 21, 2006 (PDF full text)
National Respite Coalition News
Chapel Hill Training-Outreach Project - all kinds of information about the act, including a summary, and links associted with the act and with the Chapel Hill Respite Programs
Track the bill
History of the act, including links to related bills
NFCA summary
National Family Caregivers Association summary of the act and other NFCA links
Family Caregiving Resources
List ofsome organizations that help find respite care around the country

Bloggers Unite for Human Rights

2008-05-16T20:53:00Z

BlogCatalog has organized a Community Human Rights Awareness Campaign. This effort challenged bloggers to do their part to help make the world a better place by posting about a particular social cause on a single day. Here is my contribution. My chosen topic is censorship.

Censorship is denying access to information. As a writer, I am sensitive to anything that restricts freedom of expression. As a person with a disability, I am sensitive to anything that denies access. As a reader, I am sensitive to the fact that restricting expression often leads to denying access or freedom or even life.

Censorship is a reality around the globe. Amnesty International (AI) highlights individuals who are persecuted because of what they write, produce, circulate, or read. This is not simply about crossing out content or controlling writers and publishers. People are punished for distributing or reading! People are punished for supporting or even just knowing about the unwanted ideas.

Consequently the first condition of progress is the removal of censorship."
-- George Bernard Shaw, Irish playwright and critic (1856-1950)

The AI list includes journalists, publishers, poets, bloggers, both male and female, from countries such as Russia, Egypt, Cuba and Myanmar. Crimes include articles against torture, calling for peace, or simply sending e-mails. Punishment may be pressure, but more often it is imprisonment or death.

Chinese is the most used language in the blogosphere, but its growth has been slowing in the last couple of years. Technorati's Tom Foremski speculates the slowdown is due to increasingly open censorship.

And the United States is not without it's share. The Supreme Court says there are some types of expression that really should be censored. Find the details here. And what about the children -- how can they be protected? Read what the American Library Association (ALA) has to say here. What kinds of materials are censored most often? Find out here.

The Forbidden Library lists books that have been challenged or banned in the US. It is a long list, even though it is not complete. Read the list of books and reason they were banned. The Diary of Anne Frank is on the list because it is a "real downer." It would be funny if it wasn't so sad.

And Tango Makes Three topped the ALA list as the most challenged book of 2007. It is about two male penguins who care for an orphaned egg. In fact eight of the top ten books were challenged for sexual or homosexual subjects. Huckleberry Finn was banned for racism. Children's books are often targeted because they encourage the kids not to obey their parents.

It is as if by banning the written word, the unwanted activity no longer exists. If our kids don't read about it, they will never do anything bad. After all, isn't that how it happens? And what about the kids who don't read -- do they do what their parents tell them?

"Censorship, like charity, should begin at home;
but unlike charity, it should end there." ~ Clare Booth Luce

National Coalition Against Censorship highlights what is happening in censorship in the arts, entertainment, science and more. There are many interesting links from this site, including a peek at the presidential candidates and a scholarship to the NY Film Academy. Amnesty International provides links to organizations concerned with censorship.

The Forbidden Library has an impressive collection of quotes by politicians, writers, historical figures. The ALA has an informative Q&A on Censorship and Intellectual Freedom.

Albert Camus (1913 – 1950), an Algerian-French writer and one of my favorites wrote:

“A free press can of course be good or bad, but, most certainly,

without freedom it will never be anything but bad.”

Are You Living Your Plan?

2008-05-09T21:07:00Z

The roads we take are more important than the goals we announce.

Decisions determine destiny. ~ Frederick Speakman

Remember when you were a kid and adults would ask "What do you want to be when you grow up?" Now that you are an adult, are you doing it?

I wondered how many people could answer positively, so I decided to ask. First, I went to Yahoo! Answers and submitted this question:

"Are you doing what you thought you would be doing?
Whether it was a childhood dream, formal training, a college major, or just an idea, many people find themselves doing something entirely different. Are you working in the job you pictured for yourself?

Is it what you expected? Do you regret it?"

One answer is selected as the best one, awarding points to the respondent.

Eleven people chose to answer. Most seemed to be very young, and some answered very negatively, sometimes very sad -

"life changes when you get older"
"I've realized that things never, ever, go as planned"
"unfortunately i have set aside my dreams and goals"

Some still have hope -

"it its a path i choose (hopefully its temporally..."
"I consider this as a stepping stone to reach my ultimate dream job..."

And others may not be following a childhood dream, but "what I am doing is sooo much better"

The best answerer wanted to be a novelist. She is currently studying to be an orchestra composer or physics professor. She says, "Either way I get to write, essentially. =)"

Then I went to Ask500People. There is limited space for the question, and the answer was a choice between yes and no. Here is the question I submitted:

"Are you doing what you thought you would be doing - whether it was a childhood dream, college major, just an idea?"

Here, members vote on the questions to be formally asked. My question was chosen and offered to the world. In just a few minutes, 346 people from 40 countries selected an answer and 11 chose to leave comments. Of those, 44%, 155 people, said yes, but that means 56% said they were not doing what they once expected to do. That is not necessarily a bad thing.

One fellow thought about his childhood and said, "I wanted to be a cowboy -- never made it." How sweet! I knew several people who wanted to be a cowboy or rancher and never quite made it.

Other commenters gave ideas about their lives. Sillynilly wrote something about being a "sex toy sales rep," not being expected, but she was content. A career soldier (23 years) said "I always wanted to be a soldier." Then there were those who said "totally beyond my comprehension" and "inadvertently came back to doing the things I love best..."

It would be an ambitious, but interesting task to learn when the goal changed for the better or became derailed, and why. Only one respondent gave a reason: "I didnt expect to get pregnant at 16." Pregnancy, marriage, economics, education or lack of it, all probably changed people's life plans. Some people accidentally fell into a dream job or followed their plan into something entirely unexpected, but wonderful.

One of the respondents asked about me. "What about you? Are you doing what you thought you would be doing?"

My answer is a simple, "No." I changed directions more than once. I wanted to be a rancher, a writer, an artist, an actor, and a dancer. None of these excluded the others. But, then life happened.

First, I never planned to be a single mother, but when I was, I put my personal goals on hold -- they were not abandoned, just on hold. My new priority was to raise the kids to the point of self-sufficiency. They were almost there when the next roadblock came along. I never planned to have multiple sclerosis. Once again, my priorities changed. One of my question respondents said, "Everything happens for a good reason." Maybe so. I always wanted to write, and now I write, but the topic is not what I thought it would be. I write about living with MS and surviving disability.

What about you?

Our ideals resemble the stars, which illuminate the night. No one will ever be able to touch them.But the men who, like the sailors on the ocean, take them for guides,will undoubtedly reach their goal. ~ Carl Schurz

5 Ways the Internet Is Important to Me

2008-05-03T00:44:00Z

Blogging Against Disablism: I submit this idea: the Internet
is an equalizer among people with different abilities.

Before I was diagnosed with MS, my days were active and I worked full time. I was a single mother of two boys, went to school, and I tried to have a social life, too. After my diagnosis, I continued my schedule. As the disease progressed, I moved into telecommuting before becoming a stay-at-home person with a disability. Life has changed, and living with a disability is different than any time in the past. One big reason is the Internet. Today, much of my life is occupied with my laptop.

Here are five ways the Internet is important to me:

1. Learning Information
There are all kinds of articles and news about medical research. The Internet can keep me abreast of new research and legislation. Because I have signed up with newsletters and organizations such as NMSS and MSIF, I get messages when new articles are available. It is uplifting to learn how much research in so many different areas is active in so many different regions worldwide.

I have also learned about people's dedication, personal experiences, and the ways so many people have touched others' lives. I was in awe of Sylvia Lawry when I first read her story and the significant impact she has had on so many lives, all because she loved her brother. There are many stories out there, and I plan to read them all -- even the strange ideas like administering carbon monoxide.

2. Socializing
The Internet allows me to maintain contact with friends, and has brought me many new friends online and around the world.

Of course there is email. I know telephones would handle this, too, but email allows us to communicate regardless of our schedules. We don't have to wait until it is convenient for both of us.

Social networking like My Space and Facebook allows me to keep up with all kinds of people and with what they are doing. Flickr lets me look through my friend's vacation pictures on my own time.

Then there are health networks like Disaboom, Revolution Health, and Patients Like Me. Again, there is the opportunity to maintain relationships, but there is even more. Each of these networks has its own strengths and satisfies a different need.

On a smaller scale with a more specialized target are networks specifically for MSers. These are usually set up by one person like Brass and Ivory who collects and shares MS blog addresses, and sometimes with a particular interest like Active MSers. They make me feel as if I should do it, too, but I have a hard time keeping up with what is already out there. Maybe one day I'll start my own niche MS network.

3. Managing my Health and Life
With resources like news articles, the National MS Society, Disaboom, and personal sites and blogs, there are so many places to find hints about everyday living with a chronic condition. I can learn more about my MS and the many, varying symptoms. Many people write about their symptoms and medication, and how they learned to deal with them.

I can create a log, tracking my disease progression, and read about others going through the same or similar experiences. I can find recommended equipment or accessible devices, or find resources to help with a new problem.

I can learn to communicate better with my doctor to ask the questions I would not have thought about. I regularly find hints to help me live the best life I can manage. I can feel bolstered by my online community.

4. Maintaining my Status as a Person
The Internet allows people with disabilities to do many things done by everyone, without discrimination.

There are dating sites, even some that cater specifically to people with disabilities. There are sites to help find employment, again, some specifically for people with disabilities. I do not need a date or a job, but I am glad to know they are available.

I do like to learn, and can take classes, and continue my education.

"A person who graduated yesterday and
stops studying today is uneducated tomorrow." ~ anonymous

And I do not plan to be uneducated.

The Internet is a great resource for shopping. Most stores have an Internet presence, so I can shop, and compare items, brands, and even stores. There is hardly anything that cannot be purchased online. I just have to be careful with my personal information and allow myself plenty of time for shipping. It just takes planning, and a little learning, because the item purchased does not always look like the picture. I admit I sometimes use the mantra, "I want everything and I want it delivered." The Internet helps make that happen.

Then, like other Internetters, I can find online entertainment in the form of music, reading, visiting museums, and playing online games.

5. Making a Difference
I am in awe of people who leave their mark, who inspire people to do great things, to do all they can. I do not flatter myself with that self image, but I try to write positive pieces and encourage people to try again, to extend themselves as much as they can. I try to connect, one person at a time, and I will listen to a dream, a fear, a hope, a hard time, or a minor accomplishment. I hope I can make a difference in a life. Maybe I can share my smile, and thereby pass it along. The Internet allows me to try.

The Internet is important to me because it allows me to continue learning and to be part of a community. My friends and family as well as new online friends help me manage my everyday life, and it feel as if I am still the person I have always been, even with limited mobility and time resources. I can even feel as if I help people or at least touch them one at a time, making a difference.

Brain Injury Survivor

2008-04-29T19:29:00Z

Dan Windheim was a mere 16 years old when an automobile accident left him with a traumatic brain injury (BTI) in 1979. He has spent much of his time since then communicating with other BTI survivors, learning about them, and sharing with newly affected people. Check out his web site, Life with BTI.

Listen to an interview with Dan where he talks about his accident, the resulting coma, his recovery and what he is up to now.

Life with BTI is an informative site. Read the Intro for a quick overview of his story.

Read the section called Q & A. For each question, there are many answers from different BTI survivors. The question topics range from age of injury, acceptance, giving yourself credit to frustration, injury results, and support. You can follow one person by reading his answers to several questions. He invites others to respond to these questions.

See about his books It's Not All Black and White: A Survivor's View of Life and The Poem Book: Reflections of a Brain Injury Survivor. Dan Windheim is currently writing a new book on what people do not know about living with a disability. Watch this man. He is doing good stuff.

My House Is Fabulous!

2008-04-27T01:08:00Z

April is Fair Housing Month. It is the 40th anniversary of the Fair Housing Act's signing by President Lyndon B. Johnson on April 11, 1968. Disability was not specifically included at that time, and people who lived with disabilities were far from the minds of the public and Congress. Fair Housing was available based on race, religion, sex, and national origin, and that was a good start. Reading that the Fair Housing Act was signed forty years ago made me think about my own living arrangements - before and after disability came into my life.

In 1974, when I was looking for housing for my two young boys and me, I selected a nice, affordable two-bedroom apartment in a nice part of town. It was not too far from the bank where I had just been hired. I told the woman that I would take it, and she responded that she could not rent it to me. A couple of questions came to mind. First, why did she show it to me? Second, why couldn't I rent it?

She showed me because I was looking alone. She did not rent to me because she said each child needed a room. I needed a three-bedroom. The apartment I liked and could afford was only two bedrooms, and I had two children. The boys were one and three years old, and they shared a room It would not work.

I looked at several apartments after that who were willing to rent to me, and I ultimately rented a two-bedroom a little further from work. The boys shared a room. No one else had the rule that said each child must have a separate room. That apartment discriminated against me, not because I was a woman, but maybe because I was a single mother, or maybe just because I was a mother. I was not covered under the Fair Housing Act.

The Fair Housing Act was later updated, expanding the list of protections to include familial status and disability. I would have had a case against that apartment building, but we enjoyed the apartment we were able to rent. Today, if I face possible discrimination, as a woman with a disability, there is a now law to support me. My own recent experience has been rather favorable.

In 1995, after the ADA was signed, I rented a house, and the landlady replaced the bathroom door to accommodate my scooter. When I moved to another rental home a couple of years later, the management company allowed the bathroom door to be enlarged, but at my expense. They gave me permission with the caveat that I replace the original door when I leave. Maybe they didn't tell the owner they had allowed construction on his house. Anyway, I was not denied access.

My limited experience is not necessarily typical. The American Institute of Architects posted an entry Reacting to Violations of the Fair Housing about inconsistencies. The most interesting points in this post are the comments, mainly from architects trying to comply with only vague direction in design regulations. With continued confusion among the designers and the many differences in disabilities, the perfect house is still beyond reach unless we design our own.Sights that offer help, such as Adaptive Access in Houston. For apartments, there is National Accessible Apartment Clearinghouse which maintains a national database of accessible apartments.

Are there still discriminating rental situations? Of course there are. There is still work to be done, but it is getting better. Maybe one day, all housing will be fair and fabulous!

Will You Blog Against Disablism?

2008-04-22T10:17:00Z

Diary of a Goldfish has started a new special day. Inspired by similar days created to combat sexism and gender prejudice , The Goldfish named the special day, to be observed May 1, Blogging Against Disablism Day.

What does this mean? What do you do? Make a post about your personal experiences, discrimination, or anything else you choose.

Wanna join? Leave a comment with The Goldfish.