Friday, May 28, 2010

The Show Must Go On

A film by Kristie Salemo Kent about living with MS

Tuesday, May 25, 2010

Wednesday, May 19, 2010

Doing well in Poland and on her way home.
We stayed in the best hotel I've ever stayed at in Bratislava! It was set up amazingly for a disabled person.
read more 

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Monday, May 17, 2010

2010 MS Research Teleconference
with Dr. Ruth Ann Marrie,
Director of the Winnipeg MS clinic

The Multiple Sclerosis Society of Canada is proud to announce the eighth annual MS Research Teleconference taking place on Thursday, May 27, from 6 to 8 p.m., Eastern Time.
register online
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reBlog from MS Doesn’t Make Us Immune

As if having MS weren’t enough, we all need to be aware that it doesn’t protect us from other serious conditions as well.  So if you’re having unexplained symptoms, it’s always best to have them checked out.

You should read the whole, MS Doesn’t Make Us Immune, May 2010

CU's 'brain bank' could lead to finding MS cure | Washington Examiner

CU's 'brain bank' could lead to finding MS cure | Washington Examiner
Cameras scan this repository at the University of Colorado medical campus, protecting the valuables frozen inside: pieces of prostate cancer, fetal stem cells and slices of human brain damaged by multiple sclerosis.

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Saturday, May 15, 2010

More news from Poland
Knowing what I know now a week later, I don't think it is wise doing the touristy things after.
read update
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Friday, May 14, 2010

New MS treatment more hype than help?
Many Canadians have become instant believers as they hear an unending supply of stories touting success rates of 90 per cent. The very name of the technique ( "the liberation treatment") has added fuel to the media's convincing expectations that MS victims can be set free from a progressively debilitating disease. To top it all off...Read more

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10th International Health Care Conference
Transformative Changes to Health Care - A Pressing Need for Action
June 28 - 29th, 2010

Delta Grand Okanagan Resort and Conference Centre
Kelowna, BC, Canada 

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Thursday, May 13, 2010

Posted using ShareThis
Immune system 'reboot' aids MS patient

Windsor-born Aaron Prentice, 35, says he's doing well after undergoing experimental bone marrow stem cell transplant treatment for multiple sclerosis. Prentice was the last of 24 MS patients to take part in the trial procedure, which was only available in Ottawa. A benefit dinner for Prentice is being held in Windsor on May 23. Photograph by: Handout, The Windsor Star

For Windsor-born Aaron Prentice, 35, it's still early, and there are many months of monitoring to come, but he feels fortunate to be a part of the study, which involves transplanting bone marrow stem cells in people with MS to see...Read more:

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Wednesday, May 12, 2010

Glasgow Health Solutions
The background of why our company, clinic and laboratory are taking forward screening and treatment of CCSVI may be of interest to many of you.
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MS Autoimmune disease?

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Something to think about...Your diet!
Attacking Autoimmune Diseases?

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Make Your Own Cooling Products

Make Your Own Cooling Products for MS Heat Intolerance

By Julie Stachowiak, Ph.D., Guide
I was losing my audience to complain about the heat to--mostly because they were all outside “enjoying the weather” while I was afraid to even open the door and let in one muggy blast of air.
For those of you with multiple sclerosis who also suffer from heat intolerance, you know what it is like: Everything slows waaaaaay down in the heat, while a parade of MS symptoms marches through your body. Then, you get cool again and things come back into focus.
I had to take action so that I could walk outside to keep up the conversation about how much I suffered in the summer. I donned a neck cooler, armed myself with a damp washcloth and a blue ice pack wrapped in a towel. I actually spent a very comfortable hour out in the heat and now have visions of enjoying picnics and parks--all in the shade, of course.

To stay cool, try these at-home tips:

Neck Coolers: By far my favorite solution is making your own neck coolers by following the instructions found on eHow website . A small amount of water-absorbing crystals actually used to keep plants moist get sewn into strips of fabric. After the cooler is finished, you soak it in water for up to 60 minutes until the crystals turn into gel and then store it in the refrigerator. The neat thing about these is that you can “regenerate” them by soaking them for just a couple of minutes and popping them back on--even while you are outside. My mother-in-law has made over 100 of these to send to our troops as well as me (although mine have a pink floral print rather than desert camo).
Blue Ice Packs: One reader uses the blue ice packs (sold at any housewares store) designed to be keep food in picnic baskets or coolers chilled. She reports: “They are sold in packages of two and I freeze them overnight. I wrap one ice pack in a towel and lean against it in a chair; it immediately lowers my body temperature, and then I can do something.”
Washcloths: Try this simple trick: Take ordinary washcloths, wet them, wring out the excess water and put each one in an individual, resealable sandwich bag. Store several of these in the freezer to grab as you are going out the door. A wet washcloth held up to the face or draped along the back of your neck can keep you going for a while, even after it isn’t cold anymore.
Spray Bottles: Evian makes pressurized bottles of water in different sizes specifically for spraying on the face. One reader suggests storing these in the fridge for a quick way to cool down. You can also try spritzing yourself with water using a clean bottle designed for misting plants.
Cooling Vests: For those of you who are serious about being outside for long periods in the summer, you may want to investigate making your own cooling vest. These vests can keep you very comfortable for several hours, even while being pretty active in hot weather. It seems that you can sign up for a free course on making a cooling vest, or you can buy the manual from for a reasonable price.
Of course, there is a large variety of personal cooling products available for purchase, including different types of vests, neck bands and hats. Some of them are outlined in my review of Top 10 Multiple Sclerosis Cooling Products.
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The Talk Show with
Bryan Allen with MP Kirsty Duncan talks about MS and "Liberation"

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MS Research Accomplishments During Past 10 Years

MS research continues to advance knowledge of the disease and treatment for people with MS. There is much greater understanding of this unpredictable, often disabling disease. Many of those accomplishments have taken place in the past 10 years thanks to the support of the Multiple Sclerosis Society of Canada and its sister national MS societies around the world, many governments and private industry. Here are some key advances:
  • There are treatments for some types of multiple sclerosis.
    • They are useful in relapsing MS
    • Their impact on development of disability still not clear

  • Researchers have developed "windows" into the disease through technology.
    • MRI scanning assists doctors in diagnosing MS more quickly
    • Canadians are leaders in MRI and other magnetic resonance technology to measure disease activity within the central nervous system

  • We have evidence myelin can and does regrow spontaneously which indicates repair is possible.
    • Myelin repair and regrowth takes place in the early stages of MS
    • Studies are underway using the body's own cells to repair myelin

  • Investigators have a better understanding of the nature of MS which means some types of MS can be more effectively managed. This is because of :
    • Studies of MS tissue (pathology)
    • Studies of the immune system (immunology)
    • Studies of the way MS naturally progresses without treatment (natural history studies)

  • Scientists have identified key molecules responsible for initiating the abnormal immune system response in MS.

    • Identifying the "culprits" will lead to better therapies

  • There is understanding that both genetic and environmental factors are important in the cause of MS.
    • More than one gene is involved
    • The excess of MS in some families is due to genetic factors
    • A major genetic study is taking place in Canada

  • Studies have found that MS is a costly disease.
    • The cost of MS is higher than many other diseases because it lasts a lifetime
    • Most of the cost of MS is borne by people with MS and their families
    • The cost of the disease is greater the more disabled a person becomes
 Toll free to reach the nearest regional office: 1 800 268-7582
Multiple Sclerosis Society of Canada
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Diane Update
there's 4 of us on this journey, to prague, so we jamede into a rental car. and suzzie, oure GPS guide got us to our doorstep-within walking distance to pretty much everywhere, only...every road is cobbled. i jiggled over them all the first day, butttt, i' here to read more

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Sunday, May 9, 2010

More news from Diane in Poland

Day 4 & 5

Can you believe a neurologist came and saw all of us at the hotel 2 days after our procedure?
I think each person had a different interview. With me, he seemed a little skeptical but was adamant that CCSVI needed to be studied. We had quite a discussion on every MS person getting the treatment and then they can study it to death. He didn't agree or disagree. He seems to be doing his own study now as he was the same person who saw us all before the procedure. He wanted percentages of any changes. I told him my head was...

Click here to read more
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Saturday, May 8, 2010

Bone Marrow Stem Cells Show Exciting Potential For Multiple Sclerosis Treatment

A groundbreaking trial to test bone marrow stem cell therapy with a small group of patients with multiple sclerosis (MS) has been shown to article
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Innate Therapeutics Receives Funding For Clinical Trial Of Progressive Multiple Sclerosis Therapeutic
Innate Therapeutics today announced funding support from Fast Forward, LLC, a not-for-profit organization established by the U.S. National Multiple Sclerosis Society and EMD Serono, an affiliate of Merck KGaA, Darmstadt, Germany. The award of funds will help support the conduct of a Phase 2A clinical trial in patients with progressive forms of MS using MIS416, a naturally occurring agent derived from bacteria.
Click here to read more

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New announcements on stem cells spark hope for people with MS

06 May 2010

Two new announcements have demonstrated the progress being made in using stem cell transplantation to treat MS.

Guidelines for Researchers

The first is the publication of an international consensus on the future of stem cell transplantation research for people with MS, paving the way for more co-ordinated global research efforts and potentially better, and quicker, patient access to stem cell clinical trials.

The guidelines, which have been written and approved by some of the most well respected international MS researchers, as well as MS Societies from around the world and people affected by MS, spell out hope for the future of MS stem cell research and debunk myths about overseas stem cell clinics claiming to cure the condition.
Click here to read article

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The Canadian Press
5/8/2010 7:55 AM
MS patients hold rallies to push for access to unproven
vein-opening procedure

People with multiple sclerosis and their supporters rallied in cities across Canada on Wednesday,
pressing for more funding and research for an unproven treatment for the disease.
The activists, many of whom were in wheelchairs, want researchers to speed up work on the theory
that narrowed neck veins cause blood-borne iron deposits to build up and damage brain cells, and that unblocking the veins will help people with MS.
The notion that chronic cerebrospinal venous insufficiency — or CCSVI, as it's called — causes or
contributes to MS has been put forward by an Italian doctor, Paolo Zamboni. But many neurologists
and others in the medical community are cautious and say that much more study is needed to see if it even plays a role in the disease.
The Multiple Sclerosis Society of Canada has called on the federal government to provide $10 million that would be earmarked for CCSVI research.
About 50 people attended a rally in Toronto outside the Ontario legislature. Among them was Daphne Mansfield, of Brampton, whose husband suffers from MS.
“What brings me here today is my husband, Luciano Vascotto. He’s had MS for 20 years and we have been trying all different things to see if we can get him walking again," she said.
"His left side is gone completely, so we’re hoping one day he’ll be able to have this surgery they are saying could help to unclog the veins, and hopefully he’ll be able to have some use of his left side again.”
In Halifax, about 30 people gathered at the legislature to call on the Nova Scotia government to approve the procedure and provide funding for those seeking testing and treatment.
Christopher Alkenbrack, a 42-year-old former teacher from Wolfville, N.S., said governments should start offering help now, even though the treatment is still in the experimental stage.
"I'm not in a wheelchair yet, but I could be soon if I don't get this procedure done," he said, leaning
heavily on a pair of crutches. "They need to act immediately."
Alkenbrack, who was diagnosed when he was 24, said he was forced to quit his job as a principal in
Quebec six years ago and his health is in decline.
He recently cashed in his RRSPs and is planning to travel to Poland on May 15, where he will receive the treatment. He expects the trip will cost him $15,000.
Nova Scotia Health Minister Maureen MacDonald said the province needs to be sure the risks and the benefits of the treatment are clearly established.
"It's still a very experimental therapy that requires more research," she told the legislature. "We need further research to determine what the impact of this treatment will be."
In Edmonton, Mike Phillips was among roughly 50 people — some carrying placards and banners
who gathered in front of the Alberta legislature.
His 23-year-old daughter Crystal recently lost the sight in her left eye because of a major MS relapse and she has started an awareness campaign of her own. Crystal, her family and friends have been wearing a decorated eye patch over their left eye.
"She came up with this idea with a group of her friends that are supporting her so that we can help
raise funds to help those people who can't help themselves and aren't able to go outside the country to get this type of help," Phillips explained.
"I think it's really important that Canada takes an immediate approach to allowing people with MS to at least be tested and then to get the medical people up to speed with these other countries so they can do this procedure."
His family plans to go to India with Crystal and "it's going to cost anywhere from $20,000 to $25,000."
An estimated 55,000 to 75,000 Canadians have MS, which causes symptoms that can include trouble with balance and walking, partial blindness and extreme fatigue.
Zamboni's theory counters the long-held belief that multiple sclerosis is an autoimmune disease, caused by the immune system attacking the myelin sheath that covers nerve tissue. It's not known what triggers that process.
Mansfield said those living with a person who has MS see "the little bits that are taken from them day by day."
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Friday, May 7, 2010

Diane in Poland for her Liberation
Day -1

Here we are in Katowice, 1 day before my MRV and Eye Exam appointments and 2 days before the big procedure! 

Get all of Diane's updates here

We wish Diane all the best in her Journey

Thursday, May 6, 2010

reBlog from The Wheelchair Kamikaze: Wheelchair Kamikaze

I found this fascinating quote today:

I've been invited to be a guest on "Global CCSVI Radio", a one-hour streaming Internet radio show that will be presented this Saturday, May 8, at 8 PM, New York time. As the name of the show indicates, we'll be discussing CCSVI and my experiences with the Liberation Procedure.The Wheelchair Kamikaze, Wheelchair Kamikaze, May 2010

You should read the whole article.

Wednesday, May 5, 2010

MS Society lobbies government for $10 million for funding into CCSVI and MS research

Ottawa, May 5, 2010 – The Multiple Sclerosis Society of Canada is calling on the government to provide $10 million for research into chronic cerebrospinal venous insufficiency (CCSVI) and MS.
Click here read more
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Monday, May 3, 2010

May is MS Awareness Month. Support the fight to end MS and donate today at

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reBlog from When and How to Tell Your Child You Have MS

I found this fascinating quote today:

Children do notice behaviors.  They are smart, and they often see more than we think they do.  They also have active imaginations, and the truth may be less scary to them than what they have conjured up to explain behaviors they don’t understand.  Your child may not come straight out and ask what’s wrong; it’s up to you to be sensitive to your child’s level of, When and How to Tell Your Child You Have MS, May 2010

You should read the whole article.

Saturday, May 1, 2010

Move Sumthin

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