Can you just give me a pill?

The dreaded needle of today’s treatments may have an easier-to-swallow alternative.

An international study of oral cladribine has been expanded to sites in the United States. Cladribine inhibits immune reactions. The third phase is one of the largest MS trials ever.

A second oral possibility is Teriflunomide which modulates T-cells. A small trial included a handful of secondary progressive MSers among the 179 participants. A larger study is underway.

technorati tags: ms, multiplesclerosis, healthcare, research, mspill, msoraltherapy

Protect the MS Centers of Excellence

The National MS Society sent out a message asking us to call our senators for support of a bill to protect the MS Center of Excellence.

Here is a copy of the message:

Protect the MS Centers of Excellence

The Veterans Affairs – Multiple Sclerosis Centers of Excellence (MSCoE) have made significant contributions in the fight against MS. Since 2003, the MSCoE have provided leadersip in research, education and clinical care that benefit all Americans impacted by MS.

The MSCoE, established by the VA, are located in Baltimore (East), and Seattle/Portland (West). The benefit of the MSCoE reaches throughout the country by providing service to 38 VA clinics in the United States.

Unfortunately, the existence of the MSCoEs is in jeopardy because of competing demands for funding within the VA.

S. 1537, introduced by Sen. Akaka, would help protect the MSCoE by formally establishing the Centers through Congressional action. The bill has been introduced in the Senate Veterans’ Affairs Committee and is expected to be considered by the full Senate as early as June.

The MSCoE support a range of programs including . . .

• Basic research into the causes of MS
• Clinical research into the treatment of MS
• Behavioral research about effective education strategies for MS patients and providers
• Population level research into the needs of MS patients and the effectiveness of the care delivery system
• Development of a national educational program which has significantly enhanced education related to MS patients who are veterans, caregivers and providers
• Development of a national program to enhance the clinical care of veterans with MS by providing improved access to subspecialty care

The support of regional MS clinics that direct the care for nearly one-third of veterans systems users with MS

Contact your senators and ask them to co-sponsor S. 1537 and protect the MSCoE and the work they do to help end the devastating effects of MS.

TAKE ACTION

Gotta Go? Well, it Depends

Embarrassed? Feel as if you regressed? Feel like a baby? Anna, a young woman with MS, expressed those feelings in an article about her experiences with incontinence.

Incontinence is a symptom that affects 80% of MSers, and it’s embarrassing. You don't want to confess your problem and you don't want to be "caught" in public, so it certainly contributes to isolation.

There are different types or levels of incontinence, from “urgency” where your body tells you it’s time to go and it means NOW, to the total disruption of the nerve signals that tell you it’s time to go.

WebMD has an excellent article that discusses the types of problems, various ways of handling the problem and treatments.

To enter the Depends sweepstakes, click here.

technorati tags: multipleschlerosis, ms, healthcare, incontinence, webmd, vickisblog

Cooking in my Scooter

There was a time I was a pretty good cook, but then I was diagnosed with MS. My balance was gone, my strength was waning, my energy was declining, my coordination uncertain at best. I could no longer handle a multi-stepped process that included precise measuring, mixing, stirring, slicing, chopping, and lifting while standing over a hot burner or leaning into a hot oven. The time and energy it took to prepare a fantastic meal meant I didn't have the energy to enjoy it. The kitchen is no longer a favorite room -- I am finished as a cook.

But, wait. Maybe there is another way. Simplify – Simplify. I have had to simplify other areas of my life to make them work, so maybe if I approach cooking from a different perspective, this will work, too.

I spent time trying one thing and then another, tweaking, practicing and practicing some more. Eureka -- I can still cook. It's not the same, but it works. I have developed a regimen so even I can prepare a meal that Garry and I enjoy. I know there are others who are ready to give up and quit cooking, so I will share what I have learned. Here is the Introduction and Table of Contents:

Cooking from a Wheelchair

I sit in a wheelchair ALL the time and I don’t have a cook, but I still have to eat. I’m guessing you do, too.

This book is about good meals that are easy to prepare, even from a chair. Using pre-packaged mixes and even canned foods, and adding your own special touches, you can prepare a nice meal without too much time or effort. This is more about what to cook as it is about how to cook. There are a few detailed recipes, but mostly easy options and tips. Some days, when you have no time or energy but still have to eat, you will find this little book comes in handy – even if you are not disabled!

Each disabled person has limitations, and yours may be different than mine. Adjust these suggestions to your particular abilities. I do not have strength, neither my right hand nor right arm works very well, I have poor balance, and I cook from a chair. Being seated provides a unique perspective in the kitchen. Sometimes I ask for help, like taking a hot bowl out of the microwave, but I can prepare most of these meals by myself. This little book shares my experiences.

The mission of this little book is to give you ideas and confidence in your ability to turn the ideas into your meals. I hope you find this useful.

Table of Contents

Getting Ready

Getting your Kitchen Ready

Getting Yourself Ready

Getting your Menus Ready

Ready, Set, Go -- Recipes

Appendix –

Ways Others Can Help

Grocery Shopping

Tips and Techniques

Special Treats

Another section will be coming later.

technorati tags: multiplesclerosis, ms, disabled, wheelchair, cooking, easycooking, ,

Thank you, Teri Garr

Teri Garr, award-winning actress, announced in 2002 that she had been diagnosed with MS. The MS Foundation presented Teri with the National Beacon Award in appreciation for her commitment to promoting awareness of multiple sclerosis.

The award was presented on the 5^th annual Cruise for a Cause. The five-day cruise was attended by 400 MSers, MS specialists and MS nurses for education, support, and empowerment.

Thank you, Teri.

technorati tags: Ms, multiplesclerosis, healthcare, award, terigarr,

Dealing with Symptoms

Many MSers have symptoms that are not necessarily caused by the MS. But whether the symptom exacerbates the MS or the MS exacerbates the symptom, MS often has its own special twist. Let’s look at a few symptoms that are not exclusive to MS, but seem to be worse when combined with MS.

Fatigue
Fatigue occurs in people who don’t have MS, so be aware that your fatigue may be attributable to factors other than MS -- for example, aging, menopause, anemia and depression. However, MS lassitude is distinguishable. Fatigue is a most frequent cause of MSers leaving the workforce. The National MS Society lists options to deal with and help manage fatigue.

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

Spasticity
You know you are having a spasm when your muscles tighten and make movement, especially of the arms or legs, difficult or uncontrollable. Here is a site dedicated to understanding spasticity regardless of the cause. It includes a gallery of 12 people, chosen for a calendar, who tell their stories. Three of these are MSers, Deanne, David, and Barbara.

technorati tags: Multipleschlerosis, ms, healthcare, spasticity, spastic, heatsensitive, temperaturesensitive, uhthoffssign, mslassitude, fatigue

MS and Cognitive Problems

There were many studies and papers this month focusing on cognitive difficulties associated with MS. I make a point of reading these, probably because the possiblity of cognitive impairment scare me so much. My father had Parkinson’s Disease with some symptoms similar to my MS. I watched him evolve from a strong, independent man to a totally dependent patient. He was unaware of almost everything around him and no longer knew my mother with whom he lived for fifty years.

Here are several recent studies and papers focusing on cognitive problems associated with MS:

• Authors discuss a potential treatment for cognitive disorders in MS patients.
• Evaluating recommendations for approaching cognitive impairment in early MS.
• New emerging imaging techniques for patients with MS who experience cognitive dysfunction.
• Four-year follow-up study on cognitive functions in newly diagnosed with MS.
• Review of studies on cognitive deterioration in MS.

For more recent research news visit the MS International Federation or for the latest on Tysabri visit the National MS Society.

technorati tags: ms, multiplesclerosis, cognitive, impairment, MSresearch

Golf Anyone?

More than 50 Michigan courses are hosting the “MS Longest Day of Golf,” a fundraiser that raised $235,000 last year. This is the 16th year for the event and they hope to raise $250,000 for MS.

For a pledge of $125, green fees are waived. Register and check for participating courses at the National MS Society web site.

MS Sucks

I found a web site named Multiple Sclerosis Sucks. And let’s face it – MS does suck. The site is subtitled How to Suffer From a Chronic and Incurable Disease Without Appearing to be a Total Loser.

This is a well-organized site made up of tongue-in-cheek articles ranging from general information about MS, to a long path to diagnosis to categories describing people’s responses to MS. He has a recipe suggesting how to show others what MS feels like, using ingredients such as small pantyhose, duct tape, and a really tough guy.

Take a look.