Sunday, April 27, 2008

Brain Injury Survivor

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.

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My House Is Fabulous

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?

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Tuesday, April 22, 2008

Will You Blog Against Disablism?

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.

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Monday, April 21, 2008

Lots of Links

Personal Pages of People Who Have Multiple Sclerosis is a site that has a list of links of exactly that - personal pages of people who have MS. Some of these are blogs, but some are web pages.

I don't know how many there are in this list, but it is impressive. The name is given with a short description of what to expect. When you follow the link, if you don't see the list, just scroll down.

Jeff Redding, legally blind, first created a similar site of personal pages for Internet surfers who are blind. Then he expanded his efforts to other disabling conditions with the goal of creating The Worldwide Virtual Community of the Disabled. He is well on his way.

You can join, chat, or browse through his awards. Good job, Jeff.

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Saturday, April 19, 2008

How Is Your Quality of Life?

Quality of Life, exactly what does that mean?

J.K. Rowlings who writes the Harry Potter books, tells of her experience with her mother’s MS. More than the disease progression, it was the deterioration of the quality of life that affected her mother and therefore her family. That is an important point, one that we sometimes forget. It may be easier to accept a chronic disease progression than it is to accept the retrogression of quality of life. Further, when quality of life deteriorates, it is not only the person with the condition who is affected, but the family and extended family.

The degree to which a person enjoys the important possibilities of his or her life.

Quality of Life, exactly what does that mean?

Source: The World Health Organization (WHO) Conceptual Framework

The perceived physical and mental health over time. A measure of the effects of chronic illness...and how an illness interferes with a person's everyday life.

Source: The Center for Disease Control (CDC) regarding health-related quality of life

Quality of Life does not pertain only to people with chronic illnesses. Healthy people with disabilities may experience a drop in their perceived life quality when access is denied or awkward, when other people stare or avoid them, or when an unfortunate choice of words makes them feel as if they do not belong in a group or place. Healthy people with no disability also experience changes in their perceived quality of life for a variety of reasons; e.g. loss of job or income, environmental conditions, crime, etc.

(read more)

Wednesday, April 16, 2008

Do You Talk with Other Patients Like You?

When I first signed up to Patients Like Me, there were 1100 MSers who had already signed up. There are currently more than 4900. There must be a reason. They are actively recruiting and it seems to be working.

There are communities for MS, but also Parkinson's, HIV/AIDS, and ALS with plans to expand with other conditions. Now they have added a Mood Community that already has 1700 registered.

In March, The NY Times Magazine published an article about the benefits of MSers communicating with MSers about specific symptoms and drug reactions and just living with MS. Click on the Multimedia graphic to enlarge it. It shows some community groups by gender, age, and country. This is truly an international site.

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Monday, April 14, 2008

MS in Videos

Icyou is a video community with intensive health content. There are all kinds of topics -- spousal snoring, high blood pressure, advice on vaccines, presidential candidates talking about healthcare. Videos are from doctors, patients, the current news, and you! Icyou even has a site dedicated to MS. Make and post your own video! Here are a couple of samples:

Lauren has really taken advantage of this service. She presents herself well, she's awfully cute, and she shows us how it is done. Here she has a job! And she is an advocate for Tysabri.

Tim talks about medical marijuana in an unsympathetic state.

Look through them, then add your own - for free!

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Survey Request

I received this request and thought I would pass it on just in case some of you did not receive it. The survey asks for opinions of their recruiting materials for a clinical test. I do not know the test.

I took the survey. It is quick and easy, covering design and colors. Here is the text they sent:

The Public Affairs/Patient Advocacy Manager at MediciGlobal are currently working on recruitment materials for an upcoming Multiple Sclerosis clinical trial, and we’d like to get the MS Community’s feedback on these materials. We’ve created a short survey asking about the design and look of the materials, and we’d love to have the feedback from you and your blogging community. This survey does not include any specific information about the clinical trial, and we will not collect any identifying information – it’s anonymous. We’d really just like to hear from the MS Community about these designs.

“Give your opinion on MS materials and designs. Your opinion counts and this should take no longer than 5 minutes or less! We’re creating materials about an upcoming multiple sclerosis clinical trial, and we welcome your input. We’d like to know how you rate the design and look of the materials. We don’t ask for any information about you. This survey is anonymous. No identifying information is collected. Please copy and paste the following link into your browser and you will be connected to the survey: We really appreciate your feedback!”

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Saturday, April 12, 2008

Tired of Fatigue

I am tired. I usually have a good attitude, am pretty healthy, and thankful for that, but most of the time I am just tired. I am tired of having MS, tired of staying in most of the time, tired of taking medicine, tired of transferring from chair to bed and back again on a board, tired of sitting down. I am tired of being tired.

Once I read about a man who had MS. His wife and caregiver was healthy, a yoga teacher, and she was the writer. She said her husband stayed in bed most of the time, getting up in his wheelchair only every other day. When he was up, it was for only about three hours. Three out of forty-eight hours did not sound like much.

Now I have to admit, that is all I know. She did not say he was asleep most of the time, or he sat up in bed and had visitors or read or listened to music. She did not say if he preferred staying in bed or longed to be up. I jumped to that conclusion, thought he wanted to be up and about, but sadly, was unable to make that happen. I do not know how he felt, but I was looking at his life through my experience. I thought he was tired. This was a couple of years ago. My experience has expanded a bit.

My tiredness has increased. At first my body was tired, heavy, slow --not all the time, but often enough and long enough. Few days, if any, escaped the feeling as time went by. Fatigue. I am not unique among MSers, nor am I even unusual. MS has so many different symptoms, and few are shared by as many MSers (80%) as fatigue.

Positive Experiences for MSers

It's hard to believe a study was needed. Positive experiences reduce depression. Who wouldda thunk it?

Alexa Stuifbergen of the University of Texas and Lorraine Phillips of the University of Missouri conducted a study that found increasing positive experiences decreased depression symptoms in MSers. Although MSers typically rate their quality of life lower than the general population, that changes when positive experiences are introduced into their daily lives.

Now, here's what I found really interesting. Let's define "positive experience." A vacation in Hawaii sounds pretty positive. However, it may also add stress and make you really tired, and how many times can you go to Hawaii anyway?

Stuifbergen and Phillips found simple things like smelling flowers and saying "thank you" were positive enough to increase their quality of life perceptions. We often have fresh flowers and pay attention to those courtesies and we are doing just fine, thank you.

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Thursday, April 10, 2008

Sativex - What Now?

It was a couple of years ago I learned of a clinical trial for a cannabis-based drug Sativex that is administered as a mouth spray. It was again noticed in December last year. Cannabis blocks receptors in the brain for pain and spasms. That trial was scheduled to complete in March of this year. What happened?

The Multiple Sclerosis Resource Centre announced results today. Read through this, scroll down, there are several articles, some including comments of people participating in the trial. It is interesting reading.

There is evidence that Sativex moderates MS progression, but more clinical data is needed before Sativex will actually be approved.

Sativex is already approved and marketed in Canada for treatment of pain in MS and cancer. It is also prescribed in Scotland. Later this year it is expected that an application to license is made in the UK.

Wednesday, April 09, 2008

Caffeine = Good?

Have you seen this?

Here is a new study that says caffeine may not be so bad after all. It has been shown to block the development of MS. Well, not exactly, but it did block EAE which is the animal version of MS. Okay, okay, it was a study in mice, not people, but it is a step in the right direction.

This is the first study that I have seen that says anything good about caffeine, so I think it is promising. They say more studying is needed before they tell us to increase our caffeine intake.

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Tuesday, April 08, 2008

Stem Cell Research

What is happening with stem cell research these days?

BrAMS, Bristol and Avon Multiple Sclerosis Centre in the UK is working toward a world without MS. Watch the video where an MSer talks about her experience with ongoing stem cell research, and a researcher talks about their future plans.

It is good to hear that research is continuing. Better treatments and even that elusive cure may be coming soon.

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Saturday, April 05, 2008

What Can One Person Do?

I would like to make a significant difference, but I am only one person. It is difficult to imagine that one person could do something that would positively impact a large portion of the world's population. Politicians do. Scientists do. Pharmacological researchers do. Regular people do not. Regular people can help a neighbor or maybe even a neighborhood, but not thousands or millions of people.

When I think of someone who has made a difference for a large community, I think of Sylvia Lawry. She was a regular person who made a difference that is felt worldwide.

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Tuesday, April 01, 2008

Let's Talk Osteoporosis

I never thought much about osteoporosis until I was diagnosed with it and began to learn more. It is serious, and older people, especially post-menopausal women, should be aware of this condition. WebMD, a site I rely on for good information, has some good articles today.

First, there is some evidence that Fosamax, a popular drug for treatment may actually weaken bones in a small subset of users.

Are you a drinker, or were you in younger days? Alcohol may heighten your osteoporosis risk.

Just as for heart disease, there may be genetic markers for osteoporosis.

Severe osteoporosis, that may be beyond Fosamax, may be treated with daily Forteo injections. I am quite familiar with this one. The problem here is that Forteo is recommended for only two years. There is a new option beyond those two years. Reclast is given only once a year -- yes, once a year! However, there are warnings accompanying this drug.

Thank you, WebMD, for continuing to keep us informed.

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