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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Sunday, April 20, 2008

Greeting and News

Thank you all for donating to Glen and me in this year’s MS Walk! Your support in this event is important to many people in the NW. The money raised is used to help with different programs like the yoga classes, water exercise classes, cooling vests or hand controls in the car, prescription medical expenses, scholarships for college, Kid's camp for kids when a parent has MS, and research for a cure. I know a cure is just around the corner.

We had a beautiful spring day! The temperature was in the mid 70's under clear blue skies with a light breeze, to keep the walkers cool. It was perfect! Could it have been because I told everyone it was going to snow? Glen says, “It’s the tent”.

DJ’s Doug and Denise Daniels from MIX 105.3 at KONA radio station had lots of great music for us to get the morning moving and start the walk (plus they brought the chocolate Spudnut donuts as promised!). Denise has some snapshots posted on the MIX 105.3 website from her scrapbook if you want to see for yourself. The Tri-City Court Club (Teri Lynn Nelson and crew) led the stretching exercises; Debbi Shea (our honoree) spoke, and we were off. I was sporting my new walking stick! Glen and I were near the back of the crowd as the walk started. If you could have only seen the walkers! There were all modes of transportation-some were running, walking, Mom's with strollers, kids with bikes, scooters, and wheelchairs. The path along the river was lined with friends and family joined together by the need to do something about MS. The one thing everyone had in common was a smile and friendly wave.

We strolled along the river chatting with different folks. I got a chance to talk to Sen. Jerome Delvin about some of the issues – research and life sciences being a couple of them. He was walking with my friend Jaime Hagarty’s Team MMSJ. The river was calm, people laughing, talking and just having a great time enjoying the walk.

These simple movements we sometimes take for granted can mean everything to a person with MS. Because MS can stop the movement in your leg, arm, hand, speech, or any part of your body, life should be celebrated and enjoyed. This too, showed on the walkers’ faces around me.

As the walkers stop for breaks under the shade trees of Columbia Park, water and snacks were handed out by many different volunteers. Our thanks to the many who gave their time and effort to make the walk possible, and we hope to see you all again next year! Before long, Glen and I headed back to our wonderful team tent (Nita’s Friends), and had snacks and lunch (prepared by the NMSS). Meriel Miller, from the Court Club, decorated the tent with star balloons and many colored punch balls. In fact, I still have one of the punch balls. It was great!

You know when someone says, that they know a band that might play for us at the walk, “They play some kind of jazz, I think”. Heads nod, eyes roll, and you think, “Sure, why not?”. Well Romagossa Blu (the band) was great!. They opened for B.B. King, I understand. Anyway, if you get a chance to go hear them, it is well worth the price of admission. We could hear these guys playing as we walked back the last little bit.

Our tent was waiting for us! Chairs, somewhere to put our feet up and rest again. And lots of food! What more could you have asked for? We had friends, shade, food, drinks and great music to listen too. Did I mention folks were dancing in grass to the music? Plus you could have massages; get your favorite thing painted on your face, and many more fun things. Then there were the prizes to be given out…no, we didn’t take home any of the winners (although my Mom did make a blanket that was given out).

Now I guess you are wondering how much money was raised? Our team is up to $7753 at this point. The number from all the money donated online and the money turned in on Saturday. Pledges are still out for some of the team. It was a huge team this year, 50 members. Anna Cirolini (9 years old), the youngest walker on our team raised $312.

Next year, when you hear me talking about the MS Walk maybe you will think about joining us for this fun-filled day. It is a day of hope, celebration and where people join together to raise awareness of MS. Ok, we raise money too! Step by step, the money we raise for research brings us closer to a cure every day.

Thank you again for your support.

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)

Friday, April 18, 2008

The Story Expanded [for my one reader, T.J.}

She leaned forward in the leather chair, her preferred seat, facing the man in 3/4ths profile, as if looking in the distance for something, someone, perhaps just escaping his questioning gaze.

“I don’t know why. It’s just every time I close my eyes, no matter how tired I am, I feel his closeness, smothering…like his presence fouls the air.”

The woman turned to face the man directly, wrenching her hands, then dropping them to her lap. They were soft, delicate, a very light tan, fingers pink ended, now grasping at the hem of her skirt, as if to gauge her worth by its warp.

Sitting in the swivel chair, the man uncrossed his legs to lean towards her, a gesture of concern. He didn’t speak but looked intently at the woman, waiting for her to gather her thoughts. Like a priest behind his screen, sitting in the dark, open to all, accepting of pettiness and depravity, the man seemed capable of weathering time.

“I feel his lips at my throat, then a sharp pain, as if I was getting a needle. I fall into a dream where I’ve become a river, rushing downhill, gorged by winter meltoff, widening my banks, opening myself up. A wolf comes to my side where he may drink and stares at himself in my reflection of him. He drinks of me, then howls, turning his muzzle to the rising moon.”

The woman is flushed, lips and hands shaking and quivering, She beseeches a reply from the man, who remains concerned but impassive.

“Is there more?” he asks, never moving.

“Just the ending. The same as all the others. I wake up in my room to see a shadow leaving through the window. I can hear a dog howling and I feel the puncture wounds in my neck. And the blood on the pillow.”

The man leaned back in his chair, as if to relieve the atmosphere of its tension, his hands folded in his lap, willing a deep breath from her. He closed his eyes on the room, breathing rhythmically, waiting patiently as he must always wait, absorbing her nervousness, feeding on it. “When you close your eyes and perceive that scene, what comes to view?” The man knew from many hours spent with her that the woman was a visual person; her thoughts presented themselves almost as videos, as if on a movie screen, the better to negate their emotional charge. “I don’t know…I see a room, this room. A safe place, like a sacristy, back and forth, this room, a church, …a man. That’s all I see, Doctor. Everything fades away….it’s darkness.”

Looking within himself, the man recognized feelings of boredom, could feel himself stealing away, abandoning his charge. He suppressed a smile as he mused on boredom’s importance in his work. It was one of the signposts he depended on, as a migratory bird can sense from his relative position to the celestial constellations that he remains on track. As always, he tried to estimate how much longer it would take for her to recognize the truth within her, to allow herself the terrible knowledge that she is human, that her dark hidden secrets are not hers alone, but part of the burden God has placed with us.

“Does that place bring anything to mind?”

The woman’s eyes seemed feral, over alert, as if guarding her children, swiveling to the room’s dark corners, daring her fears to present themselves. “When I was a child, I always felt especially safe in church. I’m still moved by the scent of incense and candles burning, but I no longer feel comfortable especially, I just enjoy the atmosphere, the incense furling around me, the candlelight flickering…..I always felt I looked my best in candlelight…or moonlight.” She leaned forward, uncrossing her legs, presenting herself. “Do you think women are more alluring in candlelight, Doctor?”


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 ynur 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 9, 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 8, 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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Yesterday was a great day for promoting the Walk MS event this Saturday! We had several interviews between yesterday and this morning. First we started yesterday morning with an interview at KONA radio with Dennis & Michael. Next we headed across the hall to Mix 105.3fm where we talked to Doug & Denise. The evening brought the first of our TV interviews. It started at Jaime's house with an interview about MS and her experiences, then we (Me, Jaime, Donna, & Dominique) all met at the Tri-City Court Club for a more in-depth Walk interview, where we all got on the exercise machines and it made for a great story!

This morning brought a VERY early morning interview. Before the sun even got up (5:30 am we hit the air). We were on KVEW's Good Morning Northwest with Kevin & Julie. They have even started their own team (lead by the weather girl...Molly). They have promised to be there Saturday with their walking shoes on and ready to go!

While on the air with KONA radio, Dennis surprised me with a beautiful walking stick! As soon as I am able I will get a picture up for all of you to see. :) It is hand made by one of his friends, with a lovely pink handle, compass, shamrock good luck charm, and my name is carved in it too! I can't wait till you all get to see it. The reason he did it is because we were talking one day after one of the other interviews about my grandpa starting a walking stick for me before he got sick and he was never able to finish it. I brought back the piece of wood he was going to make it with so at least I have that. I always wanted one though and so now I have one.

I am sure looking forward to seeing everyone at the walk. Please join us if you are here in the Tri-Cities, or happen to be passing through. We will have lots of food and some great entertainment. There will also be a raffle where some wonderful prizes will be given out. It is going to be a beautiful day and Molly (at KVEW) this morning said it is going to be 77! Let's hope she's right. It would be a nice change from the rain we have had over the last couple of years.

I hope I am starting to get some readers now that I am getting the hang of this (Jaime has been helping me). So to all of you who are reading, have a great Tuesday!

Saturday, April 5, 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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Friday, April 4, 2008

MS Walk 2008! Begging for $ Please :)

Spring is a time of growth and renewal. In 600 MS WALK locations through the county, family and friends gather together, all walking to raise money for a cure to multiple sclerosis (MS). Wouldn’t it be wonderful, if this was the year that a cure was found? MS is a disease that tends to strike people in the years they are most active with career and/or family (20’s-50’s). A diagnosis of MS comes out of nowhere and changes your life -- stopping momentum in what should be the best years of your life.

The sun was shining on the spring morning 1993 when I went to the doctor. I really didn’t have time, Glen and I were busy planning our wedding, the Candy store I was managing had just opened and I was training new staff. But my leg had been bothering me for a couple of weeks, and it was getting increasingly numb. I didn’t have a doctor, so I kept putting it off. Glen did and I finally went to his MD. Dr. Cable was an older gentleman, and we chatted about my case and symptoms. He told me that either I had diabetes so bad I should be dead, or I had MS. But he wanted more tests to be sure. Well, I’m not dead, and it turns out that I do have MS.

Little did I know about future, but then who does? Glen and I married that summer with me wearing FLAT shoes and trying not to fall. Over the years there have been some falls, bumps and bruises, things dropped or spilled. There have been days of tears and days of smiles, days of questions, and days of answers. Then you hold a new grandchild! But the whole time you’re holding this wonderful brand new bundle of Life you’re wondering if your hands are going to work, and if you can hold the new baby without your hands failing you. There is nothing like the feeling I get holding a grand baby! It chases away all the fatigue and blues. Grand kids don’t notice if I have to nap when they do, or talk with smaller words, or say the wrong words, because they do it too. Having trouble finding words (both written and spoken) has been a challenge for me over the last few years. Sometimes just a smile and nod is all that I can get out; other days I talk people’s ears off about topics that may (or may not) not match the previous topic of conversation.

So, with the spring coming, I have been busy building my MS Walk Team. This year we are 40 people strong. I have walked in the MS Walk for the last fourteen years, and have organized “Nita’s Friends” for most of those years. Over time, the team’s faces may change, but not the spirit! We walk to help those who can’t. We walk to raise money to help with research, which brings us closer to a cure every day. In the February 17, 2008 issue of Nature (a highly respected scientific research journal), researchers at Stanford University, the University of Connecticut and other institutions report having uncovered hundreds of proteins that are active at different stage of MS, particularly in the active lesions. Many of these proteins have known functions in the body, but a handful of them have no known function and may play a role in triggering an “event”. Researchers have focused on two proteins (using a mouse model), and using existing drugs have blocked their activity, and have demonstrated the ability to improve symptoms. This is real progress, and we are learning more about this disease daily! In addition, there are over 200 new drugs that are currently in clinical trials. The funding for this research comes in part from the National MS Society, much of it from donations to the MS Walk. Step by step, we are getting closer to a cure!

Glen and I will be leading our Team “Nita’s Friends” in the Kennewick MS Walk on April 12th, 2008 in Columbia Park. We are asking for help with donations to the National Multiple Sclerosis Society. You can donate to me by checking out my personal page here or you can donate to my team by visiting my team page....Nita's Friends! Remember it is tax deductible donation. We appreciate your support, no amount to small or great.

Please choose to donate, no one choose to have MS!

Thank you, Lenita

Tuesday, April 1, 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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