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Saturday, March 3, 2012

The many faces of MS - a Patient's story

The many faces of MS

MARCH 01, 2012

Jackie Zenziper has a husband, a son and a dog named Scarlet Begonias.
And although you wouldn’t know it from looking at her, she also has multiple sclerosis.

Approximately 400,000 Americans have MS, according to the National Multiple Sclerosis Society.  But while it is a relatively common disease, many of us have a poor understanding of it.

“People think it’s like a death sentence, or that you're wheelchair-bound, or that you’re done,” said Zenziper, a digital sales planner who lives in Chicago.  “And none of that’s true.”

Like many MS patients, Zenziper certainly doesn’t fit this profile.  She spends her busy days working fulltime and caring for Gavin, her 4-year-old son.

In many cases, the face of MS is not a 70-year-old man with a cane. It’s actually the 34-year-old woman chasing Scarlet Begonias.

“It’s completely manageable,” she said.  “There’s nothing that says, ‘Your life’s over.’”

“People assume right away when they’re diagnosed that they’re going to be disabled and need a wheelchair,” said Amy Perrin Ross, a nurse practitioner in the neurosciences department at Loyola University Chicago.

With immediate and regular treatment, however, MS patients can actually live long and healthy lives, she said.

Continue reading this story and watching a Video from Jackie by clicking here

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Researcher in Regina to discuss new advances in MRI techniques

REGINA — Dr. Melanie Martin hopes her research on the brain will allow her to make tools doctors can use to diagnose multiple sclerosis and Alzheimer’s disease earlier and with more confidence.

“Ultimately, I hope all the work I’m doing will lead to cures for these diseases,” Martin said.

The associate professor of physics at the University of Winnipeg was in Regina on Friday speaking to undergraduate students at the University of Regina about her cutting-edge work as part of the Canadian Association of Physicists lecture tour.

The physicist described the innovative magnetic resonance imaging (MRI) techniques she’s developing that allow researchers to view the brain in real time.

People with Alzheimer’s disease have beta-amyloid plaques in the brain, Martin said.

Before 2005, no imaging methods detected the plaques so doctors relied on memory tests and checked for traumas or other reasons to explain the dementia.

“They were fairly good at saying, ‘We’ve eliminated everything else and we really think this is Alzheimer’s disease.’ But they were never able to get that confirmation,” Martin said.

Positron emission tomography (PET) scans can confirm Alzheimer’s disease, but it doesn’t provide answers about how to treat it.
“What they’re finding is these plaques are showing up too late — the symptoms are there before the plaques are there,” Martin said. “What we’re trying to do now is find an earlier biomarker — something in the anatomy or in the function that’s going to tell us, ‘This person is going to develop Alzheimer’s disease.’ ”

As a person ages the brain shrinks, but the brain of someone with Alzheimer’s disease shrinks faster. Martin believes an area of the brain that shrinks rapidly with Alzheimer’s disease is the hippocampus, which is responsible for memory.

Using an MRI, she has devised a method to measure the brain shrinkage.

“Then my collaborators would come in with their treatments and since I have the method to measure it, they could throw their treatments at it and I could measure and see if their treatments are doing anything,” Martin said.

Presently, her research focuses on mice.

“What we’re looking for now is a mouse model that has this shrinkage,” she said. “If we can get it in the mouse, then they can try their treatment on the mice and then it can move on to the humans.”

She is also working on correlating changes in the brain’s MRI image with MS symptoms.

“What we see does not seem to correlate with what’s going on with the person,” Martin said. “We can either see lots of changes and see nothing wrong with the person or a clean brain and they are really sick.”

Complicating matters is that MS patients often experience periods of remission.

The brain’s nerves have a protective covering called myelin that acts like insulators on electrical wires. People with MS have damaged myelin so it’s like the brain’s wires are short circuiting resulting in nerve damage.

Three problems could be going on and all three will have a different signature on an MRI, Martin said. The problem is isolating which signature or signatures correlate with a symptom.

“If we could break down what’s happening in the brain and what the symptoms are, maybe that’s where the correlation could be,” she said.

MS is called a white matter disease.

“White matter in the brain is the part that has the myelin, so these methods apply to any other diseases that have white matter damage,” Martin said. “We think schizophrenia might have some white matter damage, so we’re trying to apply these methods to schizophrenia as well.”

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Study Examines MS Patients Who Restrict Activity Due to Fall Concerns

While falls in people with multiple sclerosis (MS) are a main health concern, the percentage of those who restrict their activity because of concerns about falling (CAF) is unknown. A study in the March 2012 issue of Physical Therapy estimates the percentage of people who have MS and report falling, CAF, and activity restrictions related to CAF; examines associations of these factors with fall status; and explores associations of fall status with mobility functions and number of accumulated impairments. 

Patricia Noritake Matsuda, PT, PhD, DPT, from the division of physical therapy in the department of rehabilitation medicine at the University of Washington, Seattle, led the cross-sectional survey. A total of 575 community-dwelling people with MS provided information, including sociodemographics, falls, CAF, activity restrictions related to CAF, mobility function, and accumulated impairments. The researchers used chi-square statistics to explore associations among these factors. 

According to the results, of the participants, 62% reported CAF and about 67% reported activity restrictions related to CAF. For those who did not experience falls, 25.9% reported CAF and 27.7% reported activity restrictions related to CAF. Participants who reported moderate mobility restrictions had the highest percentage of falls, while participants who had severely limited self-mobility reported the lowest percentage. Furthermore, those who reported the highest percentage of two or more falls were those with 10 impairments. 

The researchers conclude that both CAF and activity restrictions related to CAF were common in people with MS. Those who experienced falls and those who did not reported these restrictions, and the association of fall status with mobility function did not appear to be linear. While the researchers found that fall risk increased with declining mobility function, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure. 

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Online Research study will benefit those affected by MS

Find A Cure Panel is looking for US citizens with MS and who are on current medication to participate in a 15 minute anonymous online survey.   
If you successfully complete the survey, FACP will donate $25 to  MS Views and News

To access the survey, please click here: 

You will be asked to register for FACP which takes one minute then taken into the main survey. 

Note that if you previously registered for FACP years ago, you would have received an email invitation in the last day or so.

If you have any questions about participating, please email FACP at:  info@findacurepanel.com



Friday, March 2, 2012

Facilitating One Heck of a Big MS Support Group Keeps Kevin Kelley Active

-  Information found here was provided by the MS Foundation

- Facilitating One Heck of a Big MS Support Group Keeps Kevin Kelley Active

Diagnosed with MS over 11 years ago, Kevin Kelley is now retired from a high-stress job as an Internal Auditor for Brevard County. Rather than letting his MS keep him down, he says, today he wakes up daily and asks himself, "What can I do to make someone's life easier, especially my wife's?  How can I make my home, community and my world better?” 

With his goals in mind, a few years ago he took over the Central Brevard MS Self-Help Group as facilitator. The group is very active, holding year-round awareness events and fundraisers under Kelley’s direction. On May 19, for example, it will be MS Day at the Brevard Manatee Ballpark. Kevin and some members of his support group will set up an information table and sell wide-screen TV raffle tickets right in the breezeway to raise funds. Kelley laughs from past experience, “Even if the table has to be weighted down in 15-mile an hour winds.” Then they pull the winner during the 7th inning, and the ball park makes a grand announcement with full fanfare and the bleachers are awash with MS awareness.

As his group prepares to celebrate its 20th year, Kelley facilitates one of the largest MS support groups in the U.S. As far as membership, Kevin must be doing something right. He shared humbly, “I started attending health fairs and anywhere someone would let me put out a table with information about MS and our group. When I took over the group, we had about 65 members; our group now serves over 330 members and growing.” The people come and learn and share. But, Kevin shared, “One thing I stress in our group is that MS cannot be the cornerstone of your life. [Say to yourself] ‘Yes, MS is an important part of my life, but I cannot let it be the center of my life.’ Don’t let MS be an excuse for not living.”
He also added that being at the group is, “somewhere with others that are going through the same problems. It's great when I can walk into a room and say ‘I'm having a MS day’ and they completely understand.  Each member of our group is important part of our group.”

Kevin also believes his area support group is successful because, as he says, “We are like any other business. And I treat it as such. The difference is we are in the business of helping people with MS.” To keep people involved he has speakers frequently, offering anything from fire safety tips to chiropractic information, each explaining how their topic applies in respect to the patient’s MS.

He also shared a bit of know-how on starting a support group in your area, “Look for resources in your community. Be a wealth of information. Keep every business card that is ever given to you – you never know when that information will be needed. Also, keep your meetings informative and never allow the group to become a pity party.” He wants members to leave empowered and recharged, not sadder than when they arrived.
Central Brevard’s website: http://www.cbmsgroup.org

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Thursday, March 1, 2012

MS Awareness month brings organizations together, benefiting those affected by Multiple Sclerosis

March 1, 2012

MSVN is partnering with the MSF to provide much needed educational information to the Multiple Sclerosis Community

MSF Ready to Kick off Awareness Month Activities
“At Your Best with MS” is the MSF’s theme for the 2012 National Multiple Sclerosis Education and Awareness Month (NMSEAM) in March. The MSF chose this theme to encourage people with MS to do everything they can to maintain the best quality of life possible with the disease. Get involved by participating in these NMSEAM activities:
2012 Awareness Month Initiative: Win a Cruise for Two!

For the MSF’s 2012 Awareness Month Initiative we invite you to “Show us Your Best.” What do you do well?  What skill or talent are you most proud of? Are you a great artist? Awesome dancer? Do you have a knack for motivating others? Maybe you are good at listening and being supportive. Perhaps you are best at planning and setting goals.

So, “Show us Your Best” and tell us how you use “your best” to do one or more of the following: promote MS awareness and education, help others, and raise funds for the MS cause. We would also like to know how using your best skill or talent makes you be “At Your Best with MS.”

As always, we encourage you to be creative in your submission: write a poem, short story, or an essay (no more than 500 words); make a video or record a song; take a photograph or assemble a collage.  Just do your best!

The grand prize winner will be a cruise for two aboard the MSF’s 2013 Cruise for a Cause. Five honorable mentions will be awarded $50 gift cards.

Submissions will be accepted through March 31st.  Be sure to include your name, mailing address, phone number, and email address if you have one. Send your entry to Awareness Initiative, Multiple Sclerosis Foundation, 6520 N. Andrews Ave., Ft. Lauderdale, FL 33309. Or email them to awareness@msfocus.org.

Teleconferences Make MS Experts Accessible
MS Treatments and Symptom Management
Daniel Kantor, M.D., Neurologist
Tuesday, March 13th, 2012
9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST
Sponsored by an educational grant from TEVA Neuroscience

MS in the World of Work
Phillip D. Rumrill, Ph.D., CRC
Wednesday, March 21st, 2012
9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST

Urinary Tract Issues and Sexual Dysfunction in MS
S. Ali Khan, Professor of Urology
Wednesday, March 28th, 2012
9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST

 To register call Gloria at 1-888-673-6287, Ext. 126

Become a MSF Ambassador

MSF ambassadors, located in communities across the country, are important members of our MSF team. As representatives of the Foundation, they help spread MS awareness as well as information about MSF programs and services. If you are interested in joining the next class of MSF ambassadors, or in learning more about what is involved, you will find guidelines and an application in the Winter 2012 issue of the MSFocus (available soon.) Or find one online at  http://www.msfocus.org/Ambassador-Application.pdf


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Parasitic worms could offer new treatment hope for MS patients

Yes - this topic was reported about a year ago, but now it's back in the headlines:

March 1, 2012
Parasitic worms could offer a new treatment hope for patients suffering from theautoimmune disease multiple sclerosis, scientists believe.

Academics at The University of Nottingham have begun recruiting people suffering from the neurological condition on to a trial that will see them infected with a low, harmless dose of the helminth parasite Necator americanus - or hookworm.

The scientists are hoping to prove that the presence of hookworms in the body switches off the mechanism by which the body's immune system becomes overactive - the main cause of MS - and can reduce both the severity of symptoms and the number of relapses experienced by the patients.

The study is being led by Cris Constantinescu, Professor of Neurology in the University's School of Clinical Sciences and a leading MS expert, and David Pritchard, Professor of Parasite Immunology in the University's School of Pharmacy, who has spent decades studying the biology of the hookworm.

Professor Pritchard said: "This study appears counter-intuitive - we are introducing a parasite which is by definition harmful, to act as a stimulus to moderate disease. As a safeguard the hookworms are being used in carefully controlled and monitored conditions, and if successful could herald a much-needed therapy for MS patients.

"Currently, there are many MS patients for whom conventional medicines are ineffective or are associated with unwanted side effects. Hookworms have an innate ability to moderate the immune system to allow them to survive in the body for years. This moderation may have a bystander effect on the progression of MS."

The study team is in the process of recruiting more than 70 patients from the Nottingham and Derby areas who suffer from the most common type of the disease, relapsing remitting MS (RRMS), in which patients symptoms such as vision problems, dizziness and fatigue, appear and then fade away either partially or completely, and secondary progressive MS with superimposed relapses.
Half of the patients on the trial, funded with -400,000 from the MS Society, will receive a low dose of the hookworms -25 of the microscopic larvae - on a plaster applied to the arm, while the other half will receive a placebo plaster.

Once the larvae come into contact with the skin they work their way through into the blood stream until they reach the lungs where they are coughed up and swallowed to get to their final destination, the gut, where they survive by latching on to the gut lining and feeding on the host's blood. The worms do not multiply in the host but reproduce by producing fertile eggs, which are expelled in faecal matter. These hatch into infective larvae outside the body, and are used to infect patients.

The patients on the study will be given regular blood tests to check they are not anaemic - a sign that the dose of hookworms could be too high for that individual. Prior safety studies indicate that this is unlikely to happen, and de-worming will take place if it does.


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