Am I Crazy?

Last week I had the opportunity to talk with Dr. Bruce Cree of the University of California San Francisco MS Center, so I thought I would take a look at UCSF MS Center. I'm glad I did. The page on Health Psychology is particularly interesting.

Cognitive difficulties are common in MS, but specific MSers experience different types. Seven areas of problems are listed and explained, from cognitive fatigue to visual spatial skills. I have not seen this breakdown before, and it is enlightening. The article does not end there, but suggests the next step when cognitive changes are suspected.

The article continues with common health psychology issues for MSers, families, and caregivers. Areas are described in detail

Loss of Control
Self-Image
Stigma
Anger
Isolation
Dependence
Abandonment
Uncertainty

Haven't we all gone through one or more of these? Again, these issues are followed with suggestions about what to do next.

The article continues on Stress and MS and the types of help available. Then there is a section on Caregiving, tactics to keep the caregiver healthy, and another on Children, ensuring they don't lose their childhood because a parent has MS.

It sounds as if this article goes on and on. Well, it does. But I recommend reading every bit of it anyway.

technorati tags: UCSFMSCenter, mspsychology, cognitivedifficulties, self-image, stigma, isolation, stressandms, stresssuggestions, caregivertips, childrenwithmsparents, ms, mssymptoms

One MSer's Personal Story

Here's an interesting site. "Marciarita" hopes she can ease a person's feelings when facing a diagnosis of MS. She tells the story of her own diagnosis of primary progressive MS in 1990. She then continues by giving a glimpse of her life now, including pictures of Camp Can Do 2000.

She has other medical problems as well - fibromyalgia, osteo-arthritis, and snapping scapula. She has a page where she discusses her political views and links to NMSS and MSAA. What about the future? Good question. But we wonder.

She relies on the Ultimate Universal Sign to communicate -- she believes in smiles. Good for you Marciarita,. So do I.

Barbara, an MSer To Remember

March is National Women's History Month and the theme is Generations of Women Moving History Forward. March is also National MS Awareness and Education Month. Hmmm. I know many women MSers have helped move history forward. Let's look at one who made a significant difference in our lives and in American culture --

"Don't call for black power or green power.
Call for brain power."

Barbara Jordan (1936 - 1996) was the first black woman from the South to serve in the US Congress. Before that, she had her own private law practice when she was elected the first black Senator in the Texas State Senate in almost a hundred years. Although she retired from Congress in 1978 because of her MS, she remained active including work for Texas governor Ann Richards and for President Clinton.

Barbara Jordan was considered for Attorney General and U.N. Ambassador, but MS had other plans. She declined nomination to the Supreme Court. She did, however, receive many awards including the Presidential Medal of Honor in 1994.

She was such a dynamic speaker. I remember her powerful presence the first time she was a keynote speaker at the Democratic National Convention, considered by historians the finest keynote in modern history. She spoke again, but I didn't hear her second keynote. I did hear her supporting Nixon's impeachment.

In closing, a quote appropriate for today's politicians:

"Many seek only to satisfy their private work -- wants; to satisfy their private interests. But this is the great danger America faces -- that we will cease to be one nation and become instead a collection of interest groups: city against suburb, region against region, individual against individual; each seeking to satisfy private wants. If that happens, who then will speak for America? Who then will speak for the common good?"

technorati tags: NationalWomen’sHistoryMonth, Nationalmsawarenessandeducationmonth, ms, multiplesclerosis, blackpower, greenpower, barbarajordan, texasstatesenate, firstblackcongressman, democraticnationalconventionkeynote, downthemspath

I Joined the Revolution -- Revolution Health, That Is

Steve Case developed Revolution Health to facilitate the exchange of information within the health care community. Case, co-founder of America On Line, is partnering with community leaders and dozens of companies to give consumers control over their health care.

My introduction to Revolution Health came as an invitation to participate in a teleconference with two distinguished MS experts. Wednesday night, I was on the phone with Dr. Williams and Dr. Cree. The conference was information, and I was encouraged to ask anything I wanted. As an MS blogger, I appreciate all concerned for this exciting opportunity.

Dr. Olajide Williams
Dr. Olajide Williams has many honors including the Gold Foundation Award for Humanism in Medicine and Excellence in Teaching. He works at Harlem Hospital Center and Columbia University Medical Center, both in New York. Read more about Dr. Williams here. Be sure to visit Dr. Williams' blog.

Dr. Bruce Cree

Dr. Bruce Cree is a Sylvia Lawry Fellow and he works in clinical trials focusing on MS epidemiology in San Francisco. Read more about Dr. Bruce here.

I felt privileged as I posed my questions. We talked about the latest issues in research including medical marijuana, stem cells, epstein barr, genetic causes, aging, chronic conditions in addition to MS and oral medications. If you would like to listen to the entire teleconference, here are the audio files.

Cindy sent the invitation. Jason facilitated the teleconference and did a great job. I want to thank Dr. Williams and Dr. Cree for sharing their time and expertise. And thank you Steve Case for Revolution Health. The information about doctors, treatments, insurance, and more, along with popular articles and even blog hosting and forums make this site a revolutionary health community.

Join the Revolution!

technorati tags: medicalmarijuana, stemcells, epsteinbarr, msgeneticcauses, agingwithms, chronicconditionswithms, msoralmedications, drbrucecree, DrOlajideWilliams, stevecase, revolutionhealth, msexperts, healthcommunity, mssymptoms

It's Not Nice Being This Disabled

Herrard from Amsterdam was diagnosed with MS about a year ago. She sent an email about a week ago and included her blog address. The one I read is in English -- not her first language, but beautifully written. I have been reading, and re-reading.

She talks about things we have all felt:

• fighting with bureaucracy, trying desperately to remain independent, or as independent as possible
• helplessness, hopelessness, fear, rage
  
• intimacy issues
• spasms
  
• going to the bathroom, showering
• getting dressed
• isolation, feeling trapped inside
• asking for help and the unfairness of NEEDING to ask for help

Many of us have lived through these daily tasks and had the same thoughts and feelings, but Herrard writes about them so we feel them again. My heart goes out to her, and I feel so close to her, she is my 'comrade-in-arms' against MS, she is me.

Read her poem, but read it aloud, quietly, slowly, thoughtfully. One commenter said he wished he could hear it in her own voice -- yes, but I thought I did. Another said it was powerful -- yes, as is the entire blog. Other MSers can relate with her daily life and with the feelings she has communicated so well. People without MS can understand.

St. Patrick and MS

March is Irish American Month. More specifically, today is St. Patrick's Day, a celebration of all things Irish.

What does that have to do with MS?

Ireland has the highest percentage of population with MS -- by far. When Garry was working with MSIF statistics of reported MS, he found Ireland had the highest numbers of all 60 or so countries. Almost twice the UK. More than twice the US.

He wonders why. So do I.

What Does MS Look Like?

Joyce Tennyson has always believed that art should change the world. Her new photography exhibit currently in Rome called The Image of MS is a collection of portraits of MSers. She hopes her work will challenge public perceptions and encourage the newly diagnosed to seek treatment.

Tennyson was named Fine Art Photographer of the Year 2005 by The Lucie Awards and was voted among the 10 most influential women in the history of photography by readers of the American Photo Magazine.

What's New in MS Research?

When I was diagnosed in 1989, there was no effective treatment for MS. So much has changed; there are several approved treatments and the research continues to find more options. In the last several weeks, I have read about many new possibilities, including the following:

• Danish and Belgian researchers have found a computer key that may help discover more about diseases including MS.
• This month, a two year study begins exploring estriol as a treatment. Estriol has been identified as the hormone that suppresses MS symptoms during pregnancy.
• Vaccinex is commercializing a novel antibody that represents a new targeted therapy for MS.
• Enkorten, a drug developed in Bosnia, has successfully completed the first phase of clinical trials. It is the first patented drug from Bosnia for MS treatment.
• Tysabri continues to be tested as a disease-modifying treatment in view of the potential risks.
• Scientists have discovered the process used by the body to clean up damaged nerve tissue and they think this clean up process could have important implications in myelin regeneration.
• A new drug, revimmune, has been found to improve function and stop progression. Based on a follow-up, most MSers have improved movement.
• A study has found marijuana to be a wonder drug for MSers as well as other pain-causing diseases.
• BioMS is expanding its treatment options, focusing on secondary progressive MS.

This has been an exciting time for MS research, and I'm sure there are more exciting programs around the world. Wow. Sounds like hope to me.

Advocacy -- We Need It Now

Congress is working on fiscal year 2008 funding for the National Institutes of Health. A call from you can help impact that funding and result in an increase.

Do you ever wonder if individual calls really make a difference? Look at the National MS Society page on government advocacy. You will see you are not alone if you join the MS Activist Network.

There are articles on hot issues and about MS activists at work.

Make Your Mark on the Wall

This is really neat. Now make your mark and add it to the wall. I practiced with the marker, but have not yet decided what to do. What have others done?

Look at the Wall to see how our fellow MSers have left their mark in the movement to eradicate MS. There are 25 marks on each page; so far, 716. You can page through the marks or go directly to a member's mark, and see the marker drawing their mark.

Finally, a chance to have some fun with MS!

MS Awareness

The MS Awareness Foundation has two major goals in its mission to provide a rewarding lifestyle experience for MSers.

First is educating the public, especially MSers, their family and friends. They concentrate on dispelling myths, focusing on diagnosis and treatment. They present techniques for accepting the diagnosis as well as coping techniques.

The second goal seems to be providing information on an exercise program, for sale in a video and DVD format.

The web site provides details on MS diagnosis, MS symptoms, and targeted exercises developed specifically for MSers. There are links to organizations in the US and the UK.

MS Awareness Week

MS Awareness Week begins tomorrow. Show your support by joining the movement.

Voices of Multiple Sclerosis

A New York breast cancer survivor, Debra LaChance, has created The Healing Project. This is a non-profit dedicated to inspiring individuals with serious illnesses. The first project involves a series of anthologies called "Voices of . . . " and one focus is Multiple Sclerosis. Others are planned for Alzheimer's, lung cancer, alcoholism, and more.

The Healing Project is seeking stories from and about people living with life-changing illnesses. Stories must be informative, and it is important they offer comfort, hope, and encouragement. Book sales, donations, grants, and sponsorship will go toward supporting individuals and charitable organizations.

The first books are scheduled to be published next year. If you have a story or would like to help, visit The Healing Project.

Who Has MS and Where Are They?

My favorite upright Garry has been looking at visualization tools and he made some charts to show the number of people worldwide by country. He used figures provided by MSIF. For MS Awareness Month, I thought we should share his charts.

The first visualization is a world map showing the rate of MS by country population. Compare Garry's map with the Atlas of MS on the MSIF site.





The second visualization is the same information above in the form of a tree map.





Check his web site, Garry's Blog for more.

Garry used IBM's Many Eyes to create these visualizations. To have a closer look, visit here. While on that page, click on the data file to see the actual numbers provided. There were many instances where there was no information reported.

Thank you, Garry, for helping us become aware of the fact that there are so many MSers in so many places. We are not alone.

technorati tags: ms, multiplesclerosis, msawarenessmonth, manyeyes, msif, visualization, garrysblog, downthemspath

Lights, Camera, Action!

March is National MS Education & Awareness Month.

The Multiple Sclerosis Foundation is promoting awareness by offering three international teleconferences and two webchats as well as regional events. Teleconferences include a discussion of the daily ups and downs, practical strategies for daily life, and exercise to combat fatigue and mobility limitations. Webchats offer hope for depression and an open chat with MSers around the world.

They have put together a special MS Awareness Kit with educational literature created especially for MSers, family and caregivers. Just send an email or call 888-MSFOCUS (673-6287) to request your kit. It is FREE!

technorati tags: msawarenesseducationmonth, ms, multiplesclerosis, msf, multiplesclerosisfoundation, msteleconference, mswebchat, freemsliterature, depression, exercise, ms, multiplesclerosis, downthemspath