University Medical Center

Here's another one. Ohio State University Medical Center. There are two sections that especially interested me.

First is a table of symptoms categorized in a way I haven't seen before. The primary symptoms are those we all know -- such as weakness, paralysis, loss of balance. Secondary symptoms are complications as a result of the primary symptoms -- such as decreased bone activity resulting from inactivity.

The tertiary symptoms are those familiar to many of us, but rarely mentioned in a list of MS symptoms. These are social and psychological complications resulting from the first two categories -- such as loss of livelihood and depression. It is a short list here -- I think we MSers could expand it -- but I like that these conditions are recognized as symptoms.

The next section discusses diagnosis beginning with the criteria used and a list of things included in an evaluation, followed by the diagnosis procedure.

Explore the site to see the hospital care and research facilities offered by Ohio State.

technorati tags: ms, multiplesclerosis, ohiostateuniversitymedicalcenter, mssymptoms, mssocialsymptoms, mspsychologicalsymptoms, msdiagnosiscriteria, msdiagnosisprocedure, downthemspath

W. Ian McDonald (1933 - 2006)

After several years of visiting doctors to find out what was wrong, the MRI confirmed suspisions of MS. Thank you Professor McDonald.

His major accomplishments as a neurologist and researcher fine-tuned the diagnostic process using the McDonald Criteria and the newly developed MRI. The McDonald Criteria have been revised, but the role of the MRI has been strengthened.

Professor McDonald died this month.

technorati tags: ms, multiplesclerosis, msresearch, mcdonaldcriteria, msdiagnosis, mri, wianmcdonald

The Expert MS Patient

The Consortium of Multiple Sclerosis Centers provides networking and research to health professionals. They also share information with MSers in the format of online videos allowing us to become expert patients. Transcripts of each session are also provided.

The short videos are divided into two sections: the fundamentals and specific topics of concern. Fundamentals covers symptoms, diagnosis, MS effects on the mind, and the future.

Specific topics include fatigue, numbness, pain, effects of heat, balance, leg drags, memory, sex, talking to children, and many others. Many others. If you have a concern that is not covered in their list, enter your question to be answered by a nurse or doctor from the frequently asked questions.

The videos are presented by nurses who focus on the care of MSers from the International Organization of MS Nurses. This is good information. Check it out.

technorati tags: ms, multiplesclerosis, healthcare, msconcerns, consortiumofmultiplesclerosiscenters, msfundamentals, msvideos, msnurses

Focus on Your Feelings Holiday Giveaway Update

In October I wrote about an essay contest about the emotional impact of MS on your life. MSers all over the United States and Internationally wrote essays about their feelings, both ups and downs.

Ten winners of the "Focus on Your Feelings Holiday Giveaway" contest have been announced, including an MSer from South Africa.

Read the winning entries here. The essays are short (200 words or less), very personal, and they cover feelings from joy to despair, and life changes many of us have experienced.

technorati tags: focusonyourfeelingsholidaygiveaway, ms, multiplesclerosis, lifechangesbecauseofms, depression, positiveattitude

What Will Help?

A physical therapist asked me why I was not using a particular assistive device. The answer was easy -- I did not know about it. Before I bought my transfer board it did not occur to me that I would get from my chair to the bed by inching across a wooden board. I am sure there are many other things that would make my life easier, but I don't know. Even when I see something in a book or catalog, I don't know if it would solve a problem I have.

How is a girl to know? There are people who invent new items and others who have older, proven items, and they are ready to sell them all.

Abiities Expo a consumer show attended by persons with disabilities, caregivers, and professionals, is dedicated to improving the lives of the disabled, with assisted living products and services. At this show, you can compare similar items to see which one works better. You can try out and test the actual items. This Expo is sponsored by the Christopher and Dana Reeves Paralysis Resource Center along with other groups including the National MS Society.

The Expo is scheduled in:

San Antonio in January
New York in April
Southern California in June
Minnesota in September

This is a show truly designed for the disabled. There are loaner chairs and scooters and even personal care assistants available. Written materials are available in large type and braille, and sign language interpreters are ready to help. The Hands On Concept Services booth offers free wheelchair repair!

In addition to the vendor booths, there are scheduled workshops. Pick the Expo nearest you and check out the details.

Admission is an affordable $5, but they waive the charge for a completed form. (This is for the Texas expo, but each location had similar ticket information)

technorati tags: ms, multiplesclerosis, assistivedevices, abilitiesexpo, christopheranddanareeveparalysiscenter, nmss, visionimpaired, hearingimpaired, nonambulatory, disability, disabilityconference, downthemspath,

MS Ambassadors

The National MS Society names celebrities as ambassadors to help spread the word about MS. Some are celebrities who happen to have MS themselves. Others are not MSers, but have friends or family members who are. All of them have the opportunity to speak and inspire.

Here are some MS ambassadors' products that make great Christmas gifts.

Neil Cavuto, controversial newscaster was diagnosed in 1996.

Annette Funicello, mouseketeer and atress, who inspires us all with her grace, announced she has MS in 1987.

Clay Walker, country-western star was honored as Ambassador of the year in 2003 after being diagnosed in 1996.

Bill Pullman has a close friend whose wife has MS.

Teri Garr oscar-nominated movie star announced her MS in 2002.

MS did not stop these ambassadors from continuing in their careers, and succeeding. Now that is inspiring!

technorati tags: ms, multiplesclerosis, msambassadors, nailcavuto, annettefunicello, claywalker, billpullman, terigarr, christmasgifts,

What can a grandchild teach me?

I cannot walk. I spend my day in the chair of my Amigo scooter. When the grandkids were very young, each one of them, in their own time and in their own way, asked me why I couldn't walk. I did my best to explain to them about my MS.

Taylor, nearly a toddler herself, was the first to offer to teach me to walk. She was so sure she could teach me, because it really isn't too difficult. She learned to walk, so surely I could learn, too. She wasn't one to give up, and we went through that scenario several times.

Michael was the next to offer. He added a couple of extras to the offer. First, he wanted me to lean on him for my first few steps, and don't worry -- he would not let go. After I declined that offer, he pulled out one of my canes -- unused for years -- and tried to explain to me that the cane would keep me from falling.

No, kids, it's not that I haven't learned how to walk, but that I haven't learned how to walk without using my legs. What I learned, however, is how very sweet and caring you each can be. I will always remember your loving concern, and I thank you very much.

technorati tags: ms, downthemspath, multiplesclerosis, nonambulatory, grandchildren, teachtowalk

But You Don't Look Sick

Here is a site with a message board, an online store, a mailing list, and even more.

Browse the home page for a variety of interesting reading, such as 'Sick Humor,' hobby suggestions including instructions, and product reviews. There are essays reminiscent of a blog and poetry including one about Medicare's Plan D.

The forum index includes a list of topics about the forum, topics common to invisible diseases, and a long list of forums for specific diseases. Multiple Sclerosis is one. You must register before participating, you must register. Don't worry if you don't know the lingo, a helpful list of abbreviations is provided.

Give it a try and enjoy.

technorati tags: ms, multiplesclerosis, msmessageboard, msforum, personalessays, poetry, invisiblediseases,

Gifts for the MSer

It is almost Christmas, and a new question comes to mind. What do you get for an MSer at Christmas? Teddy bears are nice, but sometimes you might want something more specific.

Here are 10 Great Gift Ideas for MSers.
Happy Shopping!

technorati tags: ms, multiplesclerosis, christmasgifts, msgiftchoices

Eat your Fruits and Especially Vegetables

Fruits and vegetables have many benefits for your health, we all know that, but now a Rush University Medical Center study has identified another benefit of eating vegetables.

The 6-year study compared people who eat one serving with those who eat three servings of vegetables. This study found eating more vegetables results in slowing cognitive decline, by about 5 years. Although the study was conducted with participants over 65, but controlled for lifestyle variables such as exercise, age, sex, and race, and concluded vegetables were the deciding factor in stronger cognitive skills.

Vegetables, especially green, leafy ones, are rich in antioxidant compounds like vitamin E, flavonoids and cartenoids. So remember when your mother told you to eat your vegetables? If you eat your vegetables, you would remember.

technorati tags: rushuniversitymedicalcenter, research, healthcare, ms, multiplesclerosis, cognitiveskills, memoryloss, flavonoids, cartenoids, vitamine, downthemspath

International Day of Disabled Persons

This is our day!

The International Day of Disabled Persons, established by the World Programme of Action concerning Disabled Persons increases awareness of disability issues and promotes integration , equal opportunity and participation of disabled persons in society. Sounds good to me.

The theme for 2006 is 'E-Accessibility,' allowing everyone the opportunity to reach their full potential. Read links to the news and learning materials, and other links including the European Social Charter, effectively a civil rights declaration signed in 1961 to encourage securing social rights and trying to improve the standard of living for Europe.

technorati tags: downthemspath, ms, multiplesclerosis, internationaldayofdisabledpersons, worldprogrammeofaction, e-accessibility, europeansocialcharter, equalopportunity

What about T'ai Chi and MS?

Earlier this month, I wrote a post about Yoga and MS. A favorite reader left a comment recommending Tai Chi as well and left a site as reference.

Now I see the MS Foundation agrees.

T'ai Chi translated means "great ultimate energy." The slow meditative movements are designed from martial arts and the natural movements of birds and animals. A small group of older women (average age 71) found regular practice of t'ai chi resulted in significant improvements in lower-extremity strength, balance, and flexibility. The study focused on women, but it works for men too.

There are plenty of recommendations for T'ai Chi, and I need the flexibility. I will try it. What about you?

technorati tags: msfoundation, taichi, t'aichi, yoga, msf, downthemspath, balance, strength, flexibility

Wheelchair Performance Art

There was a time I was a dancer. Not a professional and not an award winner, but a dancer. I liked the way it felt to partner with someone to music. I liked the kicks and turns and plies of performance art. But I lost my balance, an important element in the art of dance, then I lost my ambulation. My shoulders and hands (or at least one hand) could keep a beat, but I lost my dancing.

But wait. The Dancing Queen shows us that it can be done, complete with pictures. She talks about her frustration that she cannot do it like "that other girl," but then she can do it, and she can make the dance her own. Dance is, after all, more than foot patterns and gyrations.

Performance art, just like other aspects of life, can be adapted. Pick a piece and make it your own.

technorati tags: ms, multiplesclerosis, WheelchairPerformanceArt, dance,

Hope from Research

Scientists in New York's Downstate and Maimonides Medical Centre have developed a substance that halts MS progression in mice. HALTS MS progression. In mice, but that's a step in the right direction.

The agent is made using a calcium-dependent enzyme called a calpain inhibitor. The researchers found MS was inhibited in the mice whether given orally or by injection. They also said the agent showed promise for both acute and chronic MS. Oral or injection, acute and chronic. This sounds like a research program that offers hope to MSers.

Here is an article in Zeenews.com, and another in EurekAlert identifying the researchers.

Alzheimer’s, Huntington’s and Parkinson’s may also benefit from this research.

technorati tags: ms, multiplesclerosis, research, acutems, chronicms, alzheimers, huntington, parkinsons

Stem Cells -- How Do They Help with MS?

We hear about the possibility that stem cell research could benefit MS, but exactly what does that mean? Would stem cell research pinpoint the cause? Find a cure? Lead to a better treatment?

Here is a study that relates stem cell research with the destruction and repair of myelin. The auto-immune inflammation must be suppressed and growth inhibitors must be blocked before the myelin can regenerate itself.

Now, here's where the stem cells come in. Transplanting stem cells gives the myelin regrowth a jump start. Please realize that this is my interpretation of a medically technical article full of big words like oligodendrocytes that I don't normally use in everyday conversation. But I think that's what it said. First the destruction has to be stopped, then the stem cell transplant can start the repair.

technorati tags: ms, multiplesclerosis, msresearch, stemcell, stemcellressearch, myelin

University of Maryland Medical Center

The University of Maryland Medical Center has an informative web site, allowing the reader to enter a topic, such as MS. It lists valuable links, including symptoms common in the early stages, as well as symptoms that show up as time passes, and possible triggers for exacerbations. If you are in the area, you can learn how to become a UMMC patient and select from their list of specializing doctors. If you do not live in Maryland, you may still benefit from browsing their links.

Check other diseases and conditions for an equally comprehensive list of links. I looked at Osteoporosis and found sites I had not seen before.

Good work UMMC!

technorati tags: ms, multiplesclerosis, ummc, downthemspath, healthcare, universityofmaryland, medicalcenter, symptoms, osteoporosis

Relax -- Enjoy Thanksgiving

Thanksgiving dinner is more than just another meal.

Cooking all day, serving, then cleaning up. Or, you may be coordinating the order. There are guests who don't always leave after dinner. There is family. . . everywhere. Or maybe this year is a quiet meal, shared with a spouse or one friend. Or maybe just you.

Thanksgiving is a danger warning, whether there is too much activity or not enough. Beware.

Remember that stress can exacerbate MS symptoms. Relax, and enjoy.

technorati tags: ms, multiplesclerosis, stress, exacerbation, stressmanagement, downthemspath

Advocacy Works

A new Medicare policy restricting the criteria for the mobility device doctors could prescribe has been overturned.

NMSS details how MSers and other advocates helped overturn the unfair policy. Once again physicians can prescribe wheelchairs or scooters based on functional needs instead of relying on an arbitrary test (stand, pivot, transfer) that is not necessarily appropriate.

Great work. Keep it up!

technorati tags: ms, multiplesclerosis, medicarepolicy, standpivottransfer, advocacy,

Please Sign the Petition

NMSS is behind a petition drive to increase federal funding MS research. The MS Society is asking for 200,000 signatures.

If you have MS, or if you know someone who does, click here to read the information and include your name. It takes only a moment. Then email the URL to your friends and family who would like to support the effort to find a cause, improve treatment, and miraculously find a cure.

Thank you.

technorati tags: ms, multiplesclerosis, mspetition, research, healthcare

Open Enrollment

From November 15 to December 31 is open enrollment for Plan D.

Earlier this year many of us signed up for Medicare Plan D to take advantage of prescription benefits. There were so many advertisements luring us, but they were confusing and difficult to compare.

Happy with your plan? Lucky you!

Ready to change plans? Armed with several months of experience, it should be easier to review the various plans. NMSS has tips on choosing a plan and applying for financial assistance.

technorati tags: ms, multiplesclerosis, pland, healthcare

Is this all?

You have MS. Are you still at risk for cancer? For a stroke? Isn't the MS enough?

Well, yes, it is enough, but there is no guarantee you won't also develop another chronic disease. Many blogs and stories I read include tales about a second, or even third medical problem in addition to MS. Life isn't fair.

No, life is not fair and contracting one condition does not reduce the chance of contracting another. I have secondary MS, which is not fair in itself. I also have severe osteoporosis. Not fair again. We all have to take care of ourselves, and that responsibility does not end when one disease is diagnosed.

You have MS. How do you find out if you are at risk, and what do you do to reduce that risk?

The Harvard Center for Cancer Prevention has developed a quick -- less than 5 minutes -- questionnaire to help determine your risk. It also gives tips for strengthening your health chances based on your results. Test for osteoporosis, cancer, diabetes, heart disease, and stroke. I did. It was fun, the results were correct and informative.

technorati tags: ms, multiplesclerosis, cancerrisk, healthcare

Thanks Shemar

Shemar Moore started as a fashion model, but soon became known to television audiences. Monday, Moore appeared on Ellen, where he talked about his family, especially his mother who has MS. He is currently one of the FBI profilers on Criminal Minds.

Shemar told about his ride in the MS Bike Tour.

He didn't ride alone. In fact, Shemar was joined by some of the cast and crew, including
Mandy Patinkin and Thomas Gibson.

Actors often describe their relationships while working on a television series as "like a family." How nice the Criminal Minds family joined Shemar in riding 100 miles for his mother.

technorati tags: shemarmoore, ellendegeneres, thomasgibson, mandypitinkin, msbiketour, criminalminds

What about Yoga?

MS challenges us in all facets of life, and exercising is no exception. But aerobics may not be the best program for the MSer. Yoga, however, is an excellent aid to symptom management, for the mildly disabled AND the non-ambulatory according to the American Yoga Association.

Martha Patt received the Champion of Courage grant to produce a DVD aimed at helping MSers incorporate yoga into their daily lives. Patt was diagnosed in 1984, practices yoga daily, and teaches yoga for the NMSS. She says it helps with her leg pains and anxiety. She was named a Betaseron Champion of Courage in 2004. The DVD was scheduled for production in the falloff 2005. Interested? Email Martha at yoga4ms@aol.com for more information.

Yoga is also recommended for caregivers.

Sue Lee grew up with yoga -- both grandfathers practiced and her mother taught before she began teaching. Her husband was diagnosed in the late 70's. She developed a form of yoga specifically for MSers. Find her videos here.

technorati tags: ms, multiplesclerosis, exercising, marthapatt, suelee, championofcourage

The Election Is Over -- What Now?

Some of the new representatives will be in their home districts until the 110th Congress is seated. Take advantage of this time to inform them about issues important to the MS community. Here are some issues that should interest them:

• Stem cell research passed both the House and Senate earlier this year. Maybe now the re-introduced measure can survive a veto.
• There is talk about stricter oversight of Plan D, specifically concerning costs.
• Research funding is always important, especially addressing NIH re-authorization passed by the House but not the Senate.
• A bill has been introduced that will allow the FDA to allow low-cost generics for drugs produced from living organisms.

For details about these issues, visit the NMSS.

technorati tags: ms, multiplesclerosis, research, congress, advocacy, stemcellresearch, genericdrugs, pland,

Still Working with MS?

Chronic illnesses, including MS, often cause people to quit the job market prematurely. Rehabilitation was often focused on re-entering the work force. However, the recent focus is more often aimed at job retention.

Here is a study about the trend of intervention to train people to request accommodations or improve psychosocial skills, determining which methods produce the most positive results.

There is evidence that training to request accommodations and to build self-confidence in dealing with work-related problems is effective. Evidence was weak because of the short follow-up, but the conclusion was that more rigorous study is required. The need is for participants, both as patients and as physicians.

When my doctor recommended that I retire, she also cautioned me. I struggled with the decision and I know it was right for me. It is difficult. Be careful.

technorati tags: ms, multiplesclerosis, earlyretirement, workingwithms, downthemspath

To the Slopes

November. Time for sweaters, fireplaces, planning for the holidays and your ski trip. Yes, ski trip.

The Adaptive Sports Association (ASA), a non-profit organization that works to enhance the lives of the disabled, offers the New Dimension Scholarship for snow skiing. The ASA has been serving hysically and cognitively disabled people for over 20 years helping them enjoy sports with adaptive equipment.

The ski scholarship includes roundtrip transportation to Durango, Colorado, 5 nights lodging and meals, accessible ground transportation, and 4 days instruction. Thanks to an MSF grant, ASA will host more MSers.

Skiing and snowboarding are popular activities with the disabled. Wonder how it works? Visit this site for ways to adapt.

Apply by Dec. 15. Good luck!

technorati tags: ms, multiplesclerosis, adaptivesnowskiing, adaptiveskiingscholarship, freetrip

Everyday Warriors

President Bush proclaimed November as National Family Caregiver's Month, honoring over 50 million Americans providing care for loved ones. Caregivers need care, too, and the Internet has information and support for family members providing special care.

Family Caregiver Alliance a public voice for families caring for family members with chronic diseases, offers programs to support and sustain families nationwide.

Ability Hub has a section specifically for emotional and spiritual support of caregivers, or as they say, everyday warriors.

CareGivers-USA is a nationwide directory of caregiver support services, all free and confidential. National Family Caregiver's Association suggests ten ways to show appreciation for services valued over $3 billion.

My caregiver is Garry, and I don't know what I would do without him. I hope I don't have to find out.

technorati tags: ms, multiplesclerosis, downthemspath, caregiver

How do you feel?

Here it is -- almost Thanksgiving, with Christmas not far behind. The Christmas Season is a time of celebration and happiness, but it is also a time for intense depression and disappointment. MS tends to cause your feelings to dip toward depression, but here's an idea. Write about it.

MSF and Hunter House are hosting a "Focus On Your Feelings" Holiday Giveaway. In 200 words or less, tell about the emotional impact of MS on your life. Choose your format or style, prose or poetry, and talk about depression, denial, acceptance; tell your story. Ten winners will be published on both the MSF and Hunter House web sites, and they will receive an autographed copy of MS and Your Feelings by Allison Shadday. Ms. Shadday, an MSer herself, counsels MSers as well as writes.

Send entries by Dec. 1st to editor@msfocus.org and include "Focus on your Feelings" Holiday Giveaway in the subject line. Please include your name, the date you were diagnosed, your age, city, state, telephone number or email address. Winners will be contacted by Dec. 15.

Good luck!

technorati tags: Ms, multiplesclerosis, holidaygiveaway, writingcontest, storycontest, msf, hunterhouse, focusonyourfeelings, downthemspath

MS and the Healthy Place

Here's a good site to visit. Healthy Place is a community that provides information, support, and the opportunity to share experiences. This page has a link to Health U's interactive lecture series about MS. Registration is required, but it is free. You must watch the series in order without skipping, but you can review one you have already seen.

There are other links to articles on all types of topics, including medication options and alternatives, cognitive impairment, bee sting therapy, fatigue, the possible relationship between MS and epstein barr syndrome and many others.

The sidebar also includes links to chat rooms, bulletin boards, and diaries.

Check out this site. There's something for everybody.

technorati tags: Ms, multiplesclerosis, interactivemslectureseries, msmedicationoptions, msmedicationalternatives, cognitiveimpairment, beestingtherapy, fatigue, epsteinbarrsyndrome, chatrooms, bulletinboards, msdiaries, downthemspath

MS and Research around the Globe

MS is global. The MS International Federation has launched an Arabic-language site with basic information, contact details, and other resources in the language. This is the first in a series of language sites in the MSIF World of MS.

Does your family seemed plagued by autoimmune diseases? Here is a descriptive study of this susceptibility within MSer families, and the possibilty of a link to a specific gene.

One study is examining the value of nurses specializing in MS cases. Further research will study if specific interventions are more beneficial for specializing nurses.

For more new research news, visit the MS International Federation.

technorati tags: ms, multiplesclerosis, msresearch, msif, arabiclanguage, healthcare, downthemspath

MS Myths

We don't know the cause, there is no cure, and your symptoms are different than mine. After an often long and difficult path to diagnosis, the statement that you have MS is often greeted with the question "What is MS?" Friends and family don't know either.

Everyone seems to have assumptions, but are they correct?

The National MS Society lists nine common myths about MS, then dispels our misconceptions. This is a good article whether you are newly diagnosed or have been living with MS for awhile.

technorati tags: ms, multiplesclerosis, mythsaboutms, newlydiagnosed, livingwithms, downthemspath

My Caretaker

My favorite upright Garry is my caretaker. I do not pay him, but I would and it would be worth it.

Sometimes when I am twisted, he untwists me. He gives me morning shots, brings my pills with ice water, takes me to the doctor, does numerous things to make my life easier than it would be without him. I don't want him to think I take him for granted. I know he is here and he will help me with big things, with small things, with whatever I need and a few extras.

I appreciate you, Garry, not only for the things you do for me, but the gentle, loving way you do them. You say you are honored, but you honor me.

technorati tags: caretaker, ms, multiplesclerosis, healthcare, helpinghand, dependence

MS and Breast Cancer

This is Breast Cancer Awareness month. I wrote a post on Vicki's Blog saying early detection saves lives and a cure will be found through research. MSers understand these premises. Early treatment has significant results and research will find a cause, better treatment, and, yes, ultimately a cure. Add a pink ribbon next to your prism ribbon of hope.

MS is a devastating chronic disease, but it is not a guarantee against cancer. Do the right thing and get a mammogram. But prepare yourself and realize that as in everyday life, MS adds an extra challenge.

If you are in a chair the mammography equipment can be adjusted for height, but the chair, especially if it is a scooter, adds awkwardness to an already awkward position. Balance problems may result in the need for repeated attempts before a good image is captured. Now, the other breast! Repeat height adjustment, awkward positioning, be still for the imaging.

A mammogram may be inconvenient and not much fun, but it is important. Get one.

technorati tags: ms, multiplesclerosis, breastcancerawareness, mammogram, downthemspath

Let's Plan a Dinner

MSIF invites us to host an MS Global Dinner Party on (or around) Saturday, February 24, 2007.

This dinner party is to help promote awareness and support the work of MS societies around the globe. You choose the type of event you want to host -- what about a barbecue, a picnic, a games evening, or an intimate family dinner. Your national MS society may already be involved.

Read about previous global dinner parties. There are pictures and stories about events around the world, including Kenya, Australia, and Switzerland. This year, Canada hosted the most different parties.

For more information about being involved in an official MS Global Dinner Party, click here.

Be a host and join the global MS movement, then send your story and pictures. There is plenty of time -- start to plan for dinner in February 2007.

technorati tags: ms, multiplesclerosis, msglobaldinnerparty, msif

Get Ready to Vote

Step 1: Register

There is still time, but not much. If you are not yet registered, NMMS will be glad to help. Hurry! Apply for a mail-in ballot if you might have a problem getting to the polls. I always do.

Step 2: Get Ready

NMSS has information on current issues and on how incumbents voted on bills supported by NMMS.

Step 3: Vote

Mail your ballot or go to the polls. Early voting begins pretty soon – next week in Texas.

Make your voice heard. Vote!

technorati tags: ms, multiplesclerosis, election, vote, registertovote,

Atlas of MS

The Multiple Sclerosis International Federation (MSIF) has developed a database of accessibility of resources for diagnosis and treatment of MS globally. The Atlas of MS website was launched August 14, and by September 14 more than 10,000 queries were made by people from 90 countries. Wow.

blue=complete red=in progress

Some popular queries concern the availability of travel insurance for MSers, treatment information in Europe, and the number of MRI machines. The database currently has information on 60 countries, but the data gathering is continuing. Register with your MS role, your country, and your email address to access the information.

technorati tags: ms, multiplesclerosis, msif, atlasofms, globalmsinformation

Be All You Can Be

You do not have to join the Army to live by the motto.

Helen Keller (1880-1968) said it earlier:

"I am only one. But still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do."

Good advice.

technorati tags: ms, multiplesclerosis, positivethinking, armymotto, helenkeller

Clinical Trial

Preliminary findings by Swiss researchers have shown a once-daily oral treatment is effective in MSers, reducing relapses by more than 50%. The medication, fingolimod, prevents lymphocytes from attacking myelin.

Another phase study is recruiting across Europe, Canada, and elsewhere. If you are interested in participating, visit Novartis Clinical Trials. Be aware there are side effects including a transient reduction in heart rate after the first dose, shortness of breath, upper respiratory infections, headache and gastrointestinal problems.

If the study is successful, the oral medication could be available in three to four years.

technorati tags: ms, multiplesclerosis, clinicaltrial, research, fingolimod

$4 B or $7 B? -- Take Action Now

The Senate passed a bill to increase health, education, and training by $7 billion. Representative Mike Castle of Delaware secured a commitment from the House of Representatives to match that for FY 2007. However, the latest version of the House bill is less by almost half -- only $4 billion. Rep. Castle is working to regain the earlier commitment. Read what the National MS Society says about the Appropriations Bill.

Please urge your representative to sign the "Live Up to Your Agreement" letter being circulated by Rep. Castle. Act before FY 2006 ends on September 30.

technorati tags: ms, multiplesclerosis, houseofrepresentatives,

Resistance Exercise Anyone?

Does your doctor or physical therapist recommend exercises that you do over and over? Sometimes you think they are a waste of time, that nothing will come from all those repetitions, but don't give up yet.

A recent study found that a resistance exercise program showed significant improvement after ten weeks.

Improvement was measured in strength and endurance. No adverse effects were found, and the influence of MS on physical function actually decreased.

Okay, back to exercising. 1, 2, 3 . . .

technorati tags: Ms, multiplesclerosis, msexercise, msif, progressiveresistanceexercise, healthmaintenance, ,

Does it hurt?

When I was first diagnosed, everything I read said there is no pain with MS. But I did have pain, some intermittent, but pain just the same. Why wasn't there information about it?

Now, it is generally accepted that pain is no stranger to MS. The National MS Society talks about living with MS, and specifically living with MS and the pain that comes with it.

The article covers medicines used for MS pain, other treatments that help manage pain, current research dealing directly with pain. There are eleven types named and described, including types of pain and discomfort associated with common treatments.

So if you hurt, it may be associated with your MS, but it can be treated.

technorati tags: Ms, multiplesclerosis, mspain, msdiscomfort, paintreatment, painresearch, mssociety, ,

More Research

In the MSIF report on research updates there are several studies discussing statins as a treatment option in MS. A subscription for professionals is required to read these papers, so I did some research on my own.

About 25 million Americans already take statins to lower their cholesterol, but indications are favorable for MS treatment. More studies are in process. There were so many articles, but some were dated as early as March.

Understanding MS, a site I have recommended before, has a good article.

And here is an article from the National MS Society.

Here's one of particular interest to me. Statins may be helpful to MS and osteoporosis -- and alzheimer's, too, though I have not been diagnosed with that one.

technorati tags: Ms, multiplesclerosis, msresearch, statin, mstreatment,

Research News

It is not an easy task to compare MS experiences in researching disease patterns, so extensive clinical trials are required. Before the MRI, scientists could not even see an MS lesion, but research of the lesions is making strides.

I regularly read research summaries in an effort to keep up with progress made in understanding MS, and just as regularly I do not understand what I am reading. And here’s a particularly difficult one, but it is interesting just the same.

This is a study of a muscle protein significant in both MS and muscular dystrophy. There is a deficit of the protein in MD. In MS these leaky brain vessels show a disturbance in the blood-brain barrier, creating MS lesions. The study increased understanding of the muscle protein dysferlin.

technorati tags: Ms, multiplesclerosis, dysferlin, blood-brainbarrier, lesion,

Off Balance

Some Examples

• My friend Sue and I were walking out of the office at the end of a workday when I fell, tripping Sue on the way down
• One day I got out of the car and fell on the parking lot asphalt. I walked into the meeting late and with a giant run in my hose and drying blood from the scrape on my leg
• Once I was walking in a mall and suddenly collapsed -- didn't fall forward or sideways, just collapsed straight down

My doctor did not know why I was falling. I was not tripping, just falling. He suggested a cane.

I bought a cane, but it took awhile before it became a habit. Sometimes I would get out of the car and walk ten paces or more before I realized I had left my cane in the car. Dilemma: How to get the cane without falling down on my way back to the car

I walked with a cane for a long time before I knew why. Months later when I was diagnosed with MS, I learned the cane is a common tool for MSers. The cane was for balance for those of us with sudden falls. Others used a cane because they walked with the gait of a person who had too much alcohol.

A common MS symptom is a problem with balance or dizziness. I did not know that, but I certainly know it now. Even though I no longer walk, I still experience balance problems. A cane is no longer my tool of choice. Instead I keep one hand on the steering handle of my Amigo.

technorati tags: ms, multiplesclerosis, balance, dizziness, msdiagnosis, amigo,

The World According to MS

Kathleen Wilson wanted to develop a room that was positive, hopeful, informative and fun, and the result is MS World.

This is an online support group with a mission to end the isolation often created by those of us with a chronic condition. There are message boards, email groups, and chat rooms moderated by trained MSers. But there is also art -- paintings, photographs, trading cards -- created by MSers. There are articles written by MSers. I enjoyed "Chauffeurs and Chefs" by Kelly Tomlinson.

Enjoy the gallery and library, listen to a guest speaker and subscribe to the newsletter MS Living. And while you are there, join in a chat. MS World is where MSers help MSers.

MS Center of Excellence Update

The MS Centers of Excellence are closer to long-term funding protection. The Senate passed legislation to formally establish the centers in a unanimous vote in August.

Now, on to the House.

The House of Representatives is currently considering a similar bill. The Public Policy Office is optimistic the final bill will pass this fall.

Read what the NMSS says.

technorati tags: ms, multiplesclerosis, multiplesclerosiscenterofexcellence, senate, houseofrepresentative

Want to be a Pedal Partner?

Tyler Hamilton, a professional bicycle racer and an Olympic gold medalist, unites cyclists from around the world to raise awareness and funds for MS. This year MSIF is collaborating with Global 2006 from September 15 - 22 in Switzerland, Italy and France to support MS research.

Each participant will be cycling for an MSer "pedal partner." If you are interested in being a pedal partner, contact Michelle Leighton.

The Tyler Hamilton Foundation is dedicated to promoting health and personal empowerment through cycling.

technorati tags: ms, multiplesclerosis, msif, global2006, activemser, tylerhamilton, cyclist, bicycleracing