Wireless Device Helps (Plano, Tx.) MS Patients Walk

By Arezow Doost
PLANO (CBS 11 / TXA 21) ― Jul 20, 2009

For Dwight Riskey, walking can be a challenge. "I have to tilt my hip and swing my hip so my toe doesn't hit the ground," he said.

"I used to love all sorts of sports," Riskey continued. "I had to give most of those up. Even golf."

About 20 years ago, the 59-year-old was diagnosed with multiple sclerosis after gradually noticing that his right leg was getting weaker. He would fall regularly while walking, and started using a cane. "Eventually, you find yourself not wanting to go to a baseball game because it's too far of walk," Riskey said.

The Plano man started attending to physical therapy at UT Southwestern Medical Center. But in January, Riskey was introduced to a wireless device for patients with neurological damage. And now, he's walking again, without falling.

It is called the Bioness L-300. The wireless device sends electronic signals to stimulate the nerve, turning on Riskey's muscles as he takes each step. "It's got little sticky electros," Riskey said. "This thing receives a signal from a little switch in my shoe."

Click here to continue reading

Read more of the Bioness L300

If not yet registered to receive the "Stu's Views and MS Related News", weekly Multiple Sclerosis e-newsletter, then please Click Here to register.

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A bitter pill: Price of biologic drugs often too high for poor, ill seniors who need them

BY Michael Mcauliff
DAILY NEWS WASHINGTON BUREAU

Sunday, July 19th 2009,

WASHINGTON - DeAnna Platkin couldn't afford the advanced medication for her multiple sclerosis, and she couldn't wait for health care reform.

So the 72-year-old Bensonhurst, Brooklyn, grandmother signed legal papers declaring her husband of 50 years refused to support her.

"My husband is a funny man. He doesn't want help from anyone, and this was hard for him," Platkin said. "It makes him feel like he doesn't want to take care of me."

Platkin's drug, a high-tech biological-class medication called Betaseron, came out 17 years ago, and costs more than $2,000 a month. If it was a regular medicine, there'd be a generic alternative by now.

continue reading this NY Daily News article at the 5th Paragraph

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"My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned...." - (Re-Circulated)

Yes, this article has been mentioned several times. Think of it's importance for you to remember and for all new people to this blog or our other pages, to be seeing it for the first time. It was originally published on April 3, 2008.

(To Review the article, at the bottom of this message is the link to view)

Many, many comments were left to this blog posting and scores of others simply sent email responses directly to me.

My Thanks to all, who have been leaving comments concerning this matter that needs to be circulated and re-circulated time and time again... Reason, there are always new people to read it and there are always those, who consider either not taking an MS medication or those who want to do, as I did and take that medication vacation.

There were follow-up to the original story found here. Each can be found by doing a blog search (using the box in the top left corner of the blog) for "Medication Vacation" ..

It is vital for all to chat with your medical doctor before making any changes to medication dosage.

I hope, that if you know somebody considering a medication vacation for any chronic condition, that you inform them of this blog posting.
----------------
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If you have any questions, suggestions or comments, please write to me at: stuart@msviewsandnews.org

Best Regards,

Stuart - July 20, 2009 8:51 AM


CLICK:
http://wwwmsviewsandrelatednews.blogspot.com/2008/04/my-hiatus-from-my-ms-medication-pros.html

..
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Sixty Degree Weather in July? - an MS Patients' story

written by Erin Teso on her blog: Erin and MS (Or More Sunshine)

I just finished 9 holes of golf today. I wasn't trying to commit myself to it, as I really really messed up my back two weeks ago and have been having a lot of chiropractic work done---including: acupuncture, cupping, massage, manipulation, and I'm now the proud owner of my very own Tens Unit. If you don't know what that is, it's a portable device that sends electrical impulses into muscles. So far it seems to be working. My golf game is also getting better.

All in all, I'm pretty moody. I'm not a happy camper right now, and I'm really not going to go into a laundry list of everything that's bothering me. I'll save that for my therapist or a friend's ear. However, I'm full of various emotions, that I'm really not enjoying right now, and I'm praying to God (yes I pray) that at least ONE good thing happens in the next few weeks (one thing on the list of things I've been praying about).

I want you to leave here with some great information, which I will just give using numbers. I'm really not in the mood today, and I think it's important to get some of this information out.

1. Biogen Idec and Elan have reported that the number of patients on Tysabri is increasing rapidly. We're looking at an increase of 27% over last year. I read this article at CNBC, and I was impressed that it was picked up by a major news channel (outside of the ones we're used to). It looks like more people are going on Tysabri.

2. I went to a Biogen dinner on Wednesday, where Tysabri AND Avonex were both the topics. I had never heard a doctor (outside of my own neurologist) speak so passionately about Tysabri. He was accurate in the information he gave, and he explained how it worked. Yes, he gave us all the PML information we needed, but he really advocated for the drug, in the only way he was able. Doctors have to be careful what they say. I was very impressed by his entire discussion. In a nutshell, he said the same thing I've been saying. Tysabri is the best drug out there. It's slows down the progression better than any other drug out there. The facts are there.

3. I am getting more people on Facebook. My friend Bartira, who is on her 65th Tysabri infusion, just joined the site, and she is already connected with my MS friends from all over the world. I think this is very important, because it brings us all together and gives us people to lean on during rough times.

4. Lastly, I want you to make sure you join this blog---follow it. Stu does a FANTASTIC job gathering all sorts of information from all over the world---giving us all the ammunition we need to know about our disease and the options available to us. You can join his site by clicking here: Stu's Views and News.

Hopefully, the next time I write, I will be able to share some great news and will be much happier than I am now. Right now I don't know if I should start screaming or crying!

.
Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
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Multipl Sclerosis: Community gathers to help local woman seek cutting-edge treatment in Israel

By Larissa Theodore, Times Staff

Published: Saturday, July 18, 2009 11:15 PM EDT

Patti “Trish” Brown was in her late 30s when she first began having symptoms of multiple sclerosis. The Beaver resident remembers bending her head forward and feeling a shock down the length of her spine. She asked two physicians, but neither was concerned. So Brown pushed the symptoms aside until 1998 when she had a major flare.

She and a friend were walking in the Beaver Cemetery when her right foot stopped working.

“I couldn’t take another step,” said Brown, now 53.

Her symptoms only worsened — from severe fatigue to balance and walking problems. One day, numbness crept into her feet and up her legs, and by that afternoon had worked its way up to her chest. Last year, Brown was officially diagnosed with the disease.

>> Continue reading this article


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MS Related: Geez, It's Only July and IT IS HOT !!!!

Whew - It's like an oven here today (in South Florida) and I could not imagine it being any hotter. But I do know it is hotter in other portions of this country and in other places in the world.

There are many people (with and without MS) that are affected by the heat.

To read articles in our library of MS Archives that deal with heat, how heat affects MS and other heat related topics, then click here to continue.

Be empowered by what you know of Multiple Sclerosis, to help you manage this disease.

If not yet registered to receive the "Stu's Views and MS Related News", weekly Multiple Sclerosis e-newsletter, then please Click Here to register. It will take less than 20 seconds.

Gene Regulates Immune Cells' Ability To Harm The Body

July 17, 2009

A recently identified gene allows immune cells to start the self-destructive processes thought to underlie autoimmune diseases such as multiple sclerosis (MS) and rheumatoid arthritis, researchers at Washington University School of Medicine in St. Louis have found.

Researchers showed that mice without the Batf gene lacked a type of inflammatory immune cell and were resistant to a procedure that normally induces an autoimmune condition similar to human MS. They plan to look for other genes and proteins influenced by Batf that could be targets for new treatments for autoimmune diseases.

Click to continue to read from the 3rd Paragraph

......

Surgical device invented in Halifax, Nova Scotia, transplants neural stem cells

Information Provided by Sean in Nova Scotia:

A surgical tool designed and built in Halifax is already being used to help Nova Scotians with neurological disorders and could become the gold standard around the world, says the head of the Brain Repair Centre.

Dr. Ivar Mendez showed off the instrument, called the Halifax Injector, at the Queen Elizabeth II Health Sciences Centre last week.

The device can be programmed by a touch screen to deliver precise quantities of stem cells to very specific areas deep inside the brain.

"This is the instrument that’s going to allow all the neurosurgeons in the future to repair the brain using cellular restoration," Dr. Mendez said. "When the time of stem cells comes and they’re ready for broader applications, the idea is that every operating room in the world will have the Halifax Injector."

The Brain Repair Centre has already pioneered a technique for transplanting stem cells into the brain to treat Parkinson’s disease. Video of a patient before and five years after a transplant shows a dramatic transformation: The man regained control of his hands and was able to walk normally.
Examinations of brain tissue in patients who have had the treatment also show the stem cells caused brain cells to resume producing dopamine and restore connections that were lost as a result of Parkinson’s, said Dr. Mendez.

But without an automated device like the injector it was difficult to precisely deliver the cells to the areas they needed to reach. A surgeon had to manually adjust the mechanisms that drove the needle into the brain, he said.
"We had to build an instrument that will allow us to do this, because there is nothing available," Dr. Mendez said. "To be able to put the right amount of cells in the right area without damaging the brain, and being safe, we created the Halifax Injector."

The device includes a frame that is fitted to the patient’s head and precisely holds the injection system and the micro-motors that drive it. The mechanism is connected to a computer with which a surgeon can program exactly how deeply the needle should enter the brain, how many deposits of stem cells to make, and where, and the volume of the deposits in micro-litres.

Each procedure is practised and mapped out beforehand in virtual reality.
Once the patient is prepared for surgery, the injection can proceed with one touch of a screen.
Dr. Mendez said accurate placement of the stem cells is of paramount importance, and giving surgeons this level of control is a major achievement.

The injector has been in development for at least three years with all of the work, including the machining of the components, done in Halifax.

There are plans to test the instrument at five different universities in the United Kingdom, Sweden, Germany and the United States.

Dr. Mendez said medical technology companies are interested in acquiring the rights to the patented device, and he’s already heard from surgeons wondering about its use in other areas of the body.
Dr. Murray Hong, part of the design team along with Ron Hill, Luis Bustamente and others, said the injector also has the potential to deliver drugs, genes or other compounds that need to be precisely targeted for treatment.

Source: The Chronical Herald.ca © 2008 The Halifax Herald Limited






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Clinical Trial Comparing Treatment of Relapsing-Remitting Multiple Sclerosis (RR-MS) With Two Doses of Glatiramer Acetate (GA).

Until recently I had not heard of or maybe I just had forgotten that this was taking place.

But then Carol, from Canada, asked me what I knew of the efficacy of using Double Doses of Copaxone. I informed her that I did not know about it and she then taught me something new:

To read what she sent me, click this link: Clinical Trial Comparing Treatment of Relapsing-Remitting Multiple Sclerosis (RR-MS) With Two Doses

If YOU, or someone you know is using Copaxone, in this manner, I for one and I am sure there are others, who would like to know the benefits and/or any side effects you might be having.

If there is a medical professional out there who can comment on this, we would be happy to hear from you.

Thank You



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MS Learn online Presents:

Today's new Feature Presentation

Research News
featuring Peter Calabresi, MD

focuses on:

• Oral treatments
• Genetics research
• Stopping MS progression
• Advances in imaging
• Characteristics of MS lesions
• The latest on Tysabri

Click here to view the webcast, or

copy into your browser:

http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/research-news/index.aspx

If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.

Internet Fund raiser for MS Views and News

MS Views and News (MSV&N) is asking those receiving this message to donate just $5.00 each.

This would greatly help to supply MS Views and News with seed money to get some of our pending projects started.

Please click here to help us get started with internet based programs that can benefit everybody affected by MS.

- Thank you -

Appreciatively,

Stuart Schlossman
President



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MS Topics of Interest, including Brain Games and Symptom Management

Now found on the MSV&N Topics of interest Page, you can find the MSmyWayMS Brain Games and other articles that interest many.

Brain Games is for those who need to empower their thinking and memory.

Information relating to Stem cell therapy and Symptom Management can also be found on this page

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Brighter Tomorrow Grant Applications Available

Brighter Tomorrow Grant Applications Available

7/1/2009

Beginning July 1 and continuing until October 1, the MSF will be accepting applications for the Brighter Tomorrow Grant (BTG) Program. Each year, the MSF makes dreams come true for people with MS through this program by providing goods or services—valued at up to $1000 per recipient—to people with MS nationwide.

The goal is to improve the quality of life for people with MS by enhancing their safety, self-sufficiency, comfort or well-being. Past recipients of the grant have received car repairs, ramps, wheelchairs, walkers, eyeglasses, appliances, televisions, furniture, therapeutic equipment, hobby supplies, retreats, and various home modifications.

To qualify, a recipient must be 18 years of age or older and diagnosed with MS, or be the parent of a minor child diagnosed with MS. They must be a legal U.S. resident and must not have any other means of fulfilling their wish. Applicants are asked to provide basic personal and financial information, and to write a brief essay of 100 words or less to describe how the grant would help them.

Requests made to the BTG Program must be for specific goods or services. Applications asking for cash and medications are not considered. Requests for items covered through other MSF grants—such as assistive devices and computers—will be referred to those programs.

Applications will be made available on this website (click Programs and Activities, the Brighter Tomorrow Grant), in MSFocus magazine, or by calling 888-673-6287. Previous recipients of the BTG are ineligible for future BTGs but are welcome to apply for services through other MSF grant programs.

http://www.msfocus.org/news-details.aspx?newsID=13
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Computer Grant Applications Available from the MSF

From the MS Foundation -
Computer grant news article: http://www.msfocus.org/news-details.aspx?newsID=14

Computer Grant Applications Available

7/1/2009

Applications will be accepted from July 1 to October 1 for the MSF’s Computer Grant Program.

There is a world of support and information about MS to be found using a computer, but many people cannot access it. Because a technology gap still exists for people with disabilities, this grant program provides refurbished desktop computers and for people who have MS and have limited or fixed incomes.

To meet approval for this grant, the applicant’s MS diagnosis must be verified. A brief essay from the applicant explaining how a computer will enhance their quality of life is also required.

Internet access and technical support will be the responsibility of the grant recipient. Those who need training will be referred to computer literacy classes in their area.

Refurbished computers come from schools, businesses and office buildings. The program offers only desktop computers of various models. If your computer is broken, the MSF may supply a new tower for use with your existing monitor and accessories.

Applications for this grant are available online (click Programs and Activities, then Computer Grant Program), in MSFocus, or by calling 888-673-6287.

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MS Solutions in Health Care Reform

MS Solutions in Health Care Reform

As the nation discusses health care reform, the Society and our grassroots MS activists remain focused on changes that meet the needs of people living with MS. We are asking to eliminate lifetime caps on benefits and end discrimination against pre-existing conditions. We support long-term care, limiting out-of-pocket costs, and other priorities.
Find out more >>

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My MS my Way>>> MyBrainGames has launched!

We are pleased to share with you MyBrainGames, a free suite of online cognitive games for the MS community.

For several years, game developers and healthcare professionals have been researching the effects of games on people's cognitive abilities. Recognizing the growing interest in cognitive gaming, the MS Technology Collaborative decided it was time we created a game for people with MS in collaboration with people with MS and leading healthcare professionals.

To play the games, click the button below or visit http://www.mymsmyway.com/mybraingames/. Don't forget to register on the game's welcome screen. By doing so, you'll be able to track your scores over time.

Thank you for your continued support. We are excited to offer you this new and unique technology resource.

The MS Technology Collaborative

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The No-No's of taking Medication Vacations (the re-awakening)

BECAUSE so many new people have registered to MS Views and News and/ or are just reading this blog since after the last time this article appeared, I figured it time to rear it's head again, for the benefit of anybody considering a vacation or abandonment of their Medication.. THIS IS A MUST READ article for anybody fitting either of the two mentioned categories.


The No-No's of taking Medication Vacations -
Written by; Stuart Schlossman (Jan. 12, 2009)

As many of you are already aware, I took a medication vacation in early 2008 without the consult of my medical practitioners and without the knowledge of my family.

The results were almost catastrophically negative and there is still some residual damage, which probably will never repair until we (Medical science) finds a way to reverse the damages caused to the Central nervous System and Myelin Sheath.

Since my "error" in judgment ( my experiment ) I have preached the dangers of taking a Hiatus or a vacation from prescribed medication and want to again allow you to read what I did as well as the follow-up stories.

There are thousands of new registrants to my website, and/or who read this blog since I wrote these stories earlier in 2008, and for these people as well as those who have already forgotten, you can read each by clicking on the links shown below in dated order::

My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned....

The follow-up OF (the) "My Hiatus" Story ..

An MS Story - POST HIATUS ( 3rd story in this series)

An MS Patients Update to his Medication Vacation

Read each as you have time, then share with others with MS or with any other serious illness requiring Medication Vigilance.

If you have any questions for me or which to leave a comment, please do so, so that others can understand the need for this posting.


Best,

Stuart Schlossman

If not yet registered to receive the "Stu's Views and MS Related News", weekly Multiple Sclerosis e-newsletter, then please Click Here to register.

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Small Study Recruiting People with MS and Spasticity to Compare IPX056 (Extended-release Baclofen) and Immediate-release Baclofen

Summary: Investigators at seven sites in the United States are recruiting 28 people for a study comparing the effect of the experimental compound IPX056 (extended-release baclofen) to currently available, immediate-release baclofen in relieving spasticity and symptoms related to MS. The study is sponsored by Impax Pharmaceuticals, a division of Impax Laboratories, Inc.

Rationale: Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common and troublesome symptoms of MS. Baclofen acts on the central nervous system to relieve spasms, cramping, and tightness of muscles caused by spasticity. This study is comparing IPX056, a new extended-release form of baclofen, to the currently available immediate-release baclofen tablets. Extended release – in which a drug is released over time – may allow for it to be taken less often. In a previous study that enrolled 173 people with MS, IPX056 significantly reduced spasticity when compared with placebo, according to a company press release dated August 7, 2008. Impax was requested to collect additional data on the safety and effectiveness of IPX056 by the U.S. Food and Drug Administration, according to a December 11, 2008 press release.

To read more and to learn where the study centers are located, click here

If not yet registered to receive the "Stu's Views and MS Related News", weekly Multiple Sclerosis e-newsletter, then please Click Here to register.

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"Stu's Views and MS Related News" allows persons affected by MS to be kept informed and up-to-date

The "Stu's Views and MS Related News" e-Newsletter, is now being received by e-recipients in (5o) Countries.

This is a weekly journal of recently released MS information designed to keep all affected by Multiple Sclerosis, up-to-date with the information that is available.

If you are not yet receiving Stu's Views and MS Related News, please take 20 seconds to complete the registration found here .

It is to your advantage and to the advantage of others close to you, to better understand this disease and by receiving this weekly e-newsletter, you will be kept informed.


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South Florida MS Center Receives A New Name and Address

South Florida -

The MS Center at Doctors Hospital moved to its new location at 4601 Ponce de Leon Blvd., Suite 100 Coral Gables and changed its name to Neuroscience Consultants Comprehensive Multiple Sclerosis Center in affiliation with the National Multiple Sclerosis Society.

“The center features a comprehensive multidisciplinary approach under one roof for MS patients. Healthcare professionals work together to offer prompt consultation and planning,” according to Founding Medical Director, Emeritus, Dr. Howard Zwibel.

The team consists of Carlos Ramirez-Calderon, MD as the Director of Clinical Affairs, Eduardo Ibarra, MD as the Senior Advisor Medical Affairs, Bertha C. Fonseca, MD as the Associate Medical Director and Tao Tong, MD as the Associate Medical Director.

The Neuroradiology team is fully sub-specialized as fellowship trained neuroradiologists certified by the American Board of Radiology in Diagnostic Radiology with added qualifications in Neuroradiology. Each neuroradiologist is a Senior Member of the American Board of Neuroradiology with greater than a decade of clinical experience in interpreting MS imaging.

The Center provides the following disciplines:

· Neurologists specializing in MS

· Physiatrist

· Neuroradiologists

· Neuropsychologists

· MS Nurse Specialist

· Social Worker

· Case Manager

· Physical Therapists

· Occupational Therapists

· Nutritional Evaluations

· Trilingual Staff

• 2 state-of-the-art MRI scanners utilizing dedicated MS protocols

Continue to read, by clicking here


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MS Related: Energy Conservation for those who suffer from fatigue

By Susan Dorne, OT

My last article addressed fatigue and I referred to energy conservation techniques as important methods in managing fatigue. Although I submitted an article January of 2007, I have provided additional information and recommendations in the continuation of what we can do in dealing with the effects of fatigue.

Energy conservation techniques are ways to use energy more wisely, more efficiently. They are important actions to help limit and/or avoid fatigue. It is important to be proactive and incorporate techniques and strategies in your daily lifestyle to help manage the things you want and need to do.

To prioritize, plan ahead, learn your limits, simplify and more, click here to continue

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MS Web Resources available from your One Stop Source for MS information

Links to learn from

The following links are available for your use at the MS Views and News website under the title of Web Resources:

• Alternative Therapies and / or Devices
• Caregiver Information
• Clinical Trials / Drug Studies
• Links to MS Organizations (Globally)
• Medications for Multiple Sclerosis
• Mobility and Accessibility
• MS Facts - In Languages other than English
• Multiple Sclerosis Resource Links
• MS Views and Related News Site Sponsors
• Nutrition
• Pharmaceutical / Patient Resources
• Stem Cell Related Information Links
• Symptoms and Symptom Management
• Websites Not Directly Associated w/ MS
  

Learn more of Multiple Sclerosis when registered at: http://www.msviewsandnews.org.

Once registered, you will receive our weekly ms related e-newsletter, keeping you informed of current MS information.This e-Newsletter is now being received by e-recipients in (50) Countries.

Use our MS Blog: http://wwwmsviewsandrelatednews.blogspot.com/ - to your advantage.

Become A Fan of "MS Views and News" on Facebook: http://www.facebook.com/pages/MS-Views-and-News/102000411026?ref=mf.

-- Have questions or suggestions?
Write to: stuart@msviewsandnews.org
- thank you

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Explaining the Pain - MS related

In our library of MS Archives we have various categories of interest to many regarding various MS symptoms, medications, patient stories and more.

Click here to read various articles on MS Pain



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Relationship between psychosocial factors and onset of multiple sclerosis

summary: MS is a complex disease with a multifactorial origin but of unknown cause. Psychosocial factors are amongst those which have been related to the development of the disease. The authors found a relationship between the presence of negative life events and the development of the disease, by comparing a group of people with MS and a group of healthy controls in a retrospective study. Due to the nature of the study design, these interesting results should be considered cautiously and further investigations in this field need to be carried out.

authors: Liu XJ, Ye HX, Li WP, Dai R, Chen D, Jin M

source: Eur Neurol. 2009 Jul 1;62(3):130-136

weblink: click here

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Functional electrical stimulation-assisted cycling of patients with multiple sclerosis

: biomechanical and functional outcome--a pilot study

Center for Sensorimotor Research, Department of Neurology, Ludwig-Maximillians University, Munich, Germany. jszecsi@nefo.med.uni-muenchen.de

summary: Rehabilitation in MS is essential to improve motor function when there is a certain degree of disability. However, rehabilitation treatment can be difficult if balance is also impaired, unless it is carried out with exercises which do not require a perfect balance, for example, with cycling. It has been shown in other neurological conditions that Functional Electric Stimulation (FES) when used during the process of rehabilitation (FES-supported exercise) can help to obtain better results. For this reason, the authors aimed to investigate whether FES-assisted cycling could help people with MS by performing a cross-over study. They found that the results obtained with FES-cycling therapy were much better than those obtained with cycling alone, not only in terms of subjective measures but also in objective outcomes, including the ability to transfer independently or the level of spasticity. The authors also found that the highest improvements were seen amongst people who had higher levels of disability.

» Read More

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Peer Counseling is available thru the MS Foundation

Peer Counseling

When coping with MS becomes difficult, it sometimes helps to talk to someone who has been there. Whether someone has just been diagnosed with MS or is struggling with new or ongoing symptoms, the MSF’s Volunteer Peer Counselors are here to listen and offer support.

Through our We Care, We Call program, people with MS are able to get a regular “check-in” call from other people with MS. Calls can be requested each week, every few days, or once a month. Requests for calls can be made at 888-673-6287 or support@msfocus.org.

Although women are most commonly diagnosed with MS, men with the condition face unique challenges. The MSF’s Men and MS Program puts callers in touch with MSF Volunteer Peer Counselor Jim Masterson, who has been living with MS for more than 20 years. Jim can be reached by calling 888-MSFOCUS (673-6287), or contacted at msmen@msfocus.org.

If you have a question you would like answered by a peer counselor, call our National Toll-Free Helpline at 888-673-6287 and speak to one of the volunteers. If a peer counselor is not immediately available, they will return your call as soon as possible.

*********************************************************************

The information for this article and most others on this MS Blog is provided by: Stuart Schlossman. If not yet registered to receive the "Stu's Views and MS Related News", weekly Multiple Sclerosis e-newsletter, then please Click Here to register.

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MS Foundation based Support Groups, within the USA

MS Foundation Support Groups

http://www.msfocus.org/support-groups.aspx

MS support groups provide people with MS and their families an opportunity to share their MS experiences with those who can understand and identify with them. Support group meetings are designed to be educational, fun, and positive. The MSF has a network of more than 100 independent support groups nationwide, and each one is unique.

In addition to supporting their members, MSF support groups are frequently active in raising awareness of MS in their communities. Many groups participate in National Multiple Sclerosis Education and Awareness Month each March.

Anyone with MS can start a support group and become a leader. Through the MSF Independent Support Group Program, new support group leaders are trained and receive ongoing support for their meetings. They also learn how to expand their memberships. Having a co-leader without the condition is permitted.

Each support group meeting is a little different – some are educational with speakers, others are more social, and some are a little of both. In addition, many support groups welcome participation from friends and family members.

If you would like to start a support group, or if you would like to add your support group to our directory, contact MSF Support Group Coordinator Helen Mangan at Helen@msfocus.org or call 888-673-6287. If you are looking for an existing support group to join, search our interactive support group directory below. Please call the contact person for the support group you are interested in to confirm date, time, and location.

Click on a state or select one from the options below

Select State:

Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Puerto Rico Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming

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Assistive Technology Program offered from the MS Foundation

Assistive Technology Program

The MSF Assistive Technology (AT) Program strives to educate and assist individuals with MS across the country about the myriad of AT options available and how to access these options. The MSF AT Program may provide an AT product, help locate a product, or help with funding for a wide range of devices that allow individuals with MS to function more independently in activities of daily living, as well as recreational, educational, and vocational activities including:

• Aids for Daily Living
• Communication Devices
• Computers and Computer Aids
• Environmental Control Systems
• Architectural and Vehicle Modifications
• Orthotics
• Seating, Positioning and Mobility Devices
• Aids for Vision and Hearing
• Cooling Aids

The Application Process

Applications for the MSF Assistive Technology Program are available online or via postal mail. Questions will be asked regarding symptoms, level of disability, income, family support, and assistance requirements. This information helps the AT coordinator to assess the physical, social, emotional, and cognitive needs of the patient. Financial status also plays a role in determining eligibility for the MSF Assistive Technology Program.

Upon review, the AT coordinator will determine what AT will be provided through the MSF or if a referral to another resource is needed. All equipment is ordered from a licensed medical equipment supplier. For more information on AT or to access these services, call: (888) MSFOCUS (673-6287).

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MS related : Costa Rica Stem Cell Camp ~ Week I

MS Patient Janice Fuller's recent diary/blog posts of her stem cell treatment in Costa Rica:

Click here to read:
http://adultstemcelltherapy.ning.com/profiles/blogs/costa-rica-stem-cell-camp

• Posted by Janice Fuller on July 13, 2009 at 9:30pm

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Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
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For A Multiple Sclerosis fund raiser 582 drummers set new world record

Published: 7:01PM BST 13 Jul 2009 --- U.K.

Hundreds of musicians have broken a world record for the largest group of drummers playing the same beat at the same time at Birmingham's National Indoor Arena.

A total of 582 drummers - including a number of celebrity musicians - smashed the previous world record of 533 drummers, set in the United States, just before 4pm on Monday.

Craig Glover, an organiser, said: "It's been absolutely fantastic. Everyone has really enjoyed themselves - it was a really good atmosphere. We did a simple rock groove and played for at least 10 minutes."

Continue reading from the Telegraph.Co.UK
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Smoking associated with more rapid progression of Multiple Sclerosis

July 13, 2009

CHICAGO – Patients with multiple sclerosis who smoke appear to experience a more rapid progression of their disease, according to a report in the July issue of Archives of Neurology, one of the JAMA/Archives journals.

Cigarette smokers are at higher risk of developing multiple sclerosis (MS), according to background information in the article. However, the effect of smoking on the progression of MS remains uncertain.

Brian C. Healy, Ph.D., of Brigham and Women's Hospital, Harvard Medical School and Massachusetts General Hospital, Boston, and colleagues studied 1,465 patients with MS who visited a referral center between February 2006 and August 2007. Participants had an average age of 42 and had MS for an average of 9.4 years. Their progression was assessed by clinical characteristics as well as by magnetic resonance imaging (MRI) over an average of 3.29 years.

Continue reading at Eurek Alerts

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National MS Society’s Promise: 2010 Campaign Identifies Key Signals in Myelin Repair

Jul 13, 2009

Team Funded by National MS Society’s Promise: 2010 Campaign Identifies Key Signals in Myelin Repair

A team funded in part by the National MS Society’s Promise: 2010 Campaign has demonstrated that the “Wnt signaling pathway” – a complex network of proteins that interact during brain development – may also play an important role in the failure of nerve-protecting myelin to repair itself in people with MS. Stephen P. J. Fancy, PhD, David Rowitch, MD, PhD (University of California, San Francisco) and colleagues – including Robin J. M. Franklin, PhD, DVM (University of Cambridge) report their findings in Genes and Development (2009 Jul 1;23(13):1571-85).

Drs. Rowitch and Franklin are members of the international Promise: 2010 Nervous System Repair & Protection team led by Professor Charles ffrench-Constant (University of Edinburgh and University of Cambridge, UK), who, along with three other collaborating teams, are laying the groundwork for clinical trials aimed at protecting and restoring function in people with MS.

Continue to read from the 3rd paragraph

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Lauren IS Living with MS

My Tysabri Diary..., ever have one of those days????,

Hi everyone - I had my 36th Tysabri infusion on Wednesday, 7/8. All went well, no problems. I did find out that the young lady that just started Tysabri recently at my infusion center is doing really, really well according to my infusion nurse. Apparently, this particular patient is responding favorably and in a very drastic way to her Tysabri infusions. In particular, prior to her first infusion she was on the verge of progressing to the use of a wheelchair, but now after her third infusion, she no longer even uses a cane!

Click here to continue to read Lauren's story

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Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
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He didn't have Multiple Sclerosis, but he believed in the cause.

My (Stuart's) Tribute to a guy "I" would have liked to have known:

I found this article this morning and knew that this needed to get posted to this blog so that thousands from around the globe can read what this man did to benefit all of us with MS. He deserves to be mentioned. My condolences to the Hahl family.

Tireless fundraiser for MS, and inspiration, dies before 20th bike fundraiser

He didn't have Multiple Sclerosis, but he believed in the cause. When Brian Hahl first rode his bike for MS fundraising, he didn't know anyone with MS. But, now as he was embarking on his 20th bike ride fundraiser, the New Jersey teacher died suddenly of a heart attack.

Hahl, 50, died July 9 of a heart attack as he was preparing for a long bike ride.

His friend, Jim Durham, a 58-year-old man with MS who was encouraged last year to ride 50 miles alongside Hahl last year, said, "He completely inspired me. He urged me to keep going. He pushed me to ride when I said that I couldn't do it, He knew that I could do it, and I'm so grateful to him for that."

Hahl was ready to ride in the MS Milestones for his 20th consecutive race. He helped inspire those with MS who didn't think they could always do it.

Please continue to read by clicking here.

Source for this story: examiner.com - written by: Mike Szymanski


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Springs student wins a college scholarship with heartfelt essay of his dad's MS

ARUN SIVASANKARAN - Forum Publishing Group
July 9, 2009

Kevin Stillerman of Coral Springs was six when his father started showing signs of multiple sclerosis. He was too young to realize it, but the life he knew was about to change forever.

However, it did not take him long to become conscious of the fact that his childhood was different from that of his friends. "When you have a parent with a disability, you sort of have extra responsibilities that others don't have. My dad couldn't play with me like other dads did with their kids, but it didn't affect me too much."

Stillerman, who graduated from Marjory Stoneman Douglas High School earlier this year, was searching online for scholarship opportunities when he saw what the National Multiple Sclerosis Society South Florida chapter had to offer. "The chapter was accepting applications from students who had multiple sclerosis or those who were affected by it due to someone in the family having it. I figured I had a good shot."

>> READ MORE
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MS related: A Memory Fix ? who, what ?

Information provided by Cherie Binns-RN

Source WebMd - Friday June 10, 2009

In This Issue:

• Memory Fix May Be in Your Coffee Cup • Test Your MS Management Skills • 'Memory Loss Is Scaring Me'

Put Your Memory to the Test If you've been forgetting things lately, try WebMD's online memory challenge and collect tips on living with MS. Also See: • How Sleep Helps Your Memory • The Health Benefits of Dreams • MS and Geography: What's the Link?

Memory Fix May Be in Your Coffee Cup Researchers report that caffeine could be a viable "treatment" for people with Alzheimer's disease. Also See: • Let Your Mind Put You to Sleep • Brain Yields Clues to Hypnosis Test Your MS Management Skills Multiple sclerosis can vary a lot from person to person, so managing the disease becomes personal as well. Also See: • When to See a Doctor for MS • Multiple Sclerosis Q&A Want More About MS? Would you like to receive free offers, coupons, and medical insights from MS-friendly sponsors at WebMD? Click Here.

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“Benign” Course of MS Evaluated with MRI

Jul 08, 2009

“Benign” Course of MS Evaluated with MRI and Other Imaging Methods by European Collaborators

A group of experts in MS imaging have published new information on imaging and clinical findings that might help explain why some people experience a mild course of multiple sclerosis, also known as “benign” MS. They recommend that cognitive functions, not just physical functions, be taken into account when labeling a person’s MS as benign. Massimo Filippi, MD (Scientific Institute and University Ospedale San Raffaele, Milan, Italy) and colleagues in the European imaging collaboration known as “MAGNIMS” (Magnetic Resonance Research in MS) report their findings in Neurology 2009;72:1693-1701

>> READ MORE

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