spring2010newsletter-revised_april_-Official_one.pdf (application/pdf Object)

We finally did it.  In January 2010 the MS Society of Canada, Prince George office announced that the Chapter would produce a newsletter and launch it at our MS Wellness Day event held in April.  Chapter members Ann Bozoki and Heather Lamb went to work on getting things started and with input from Joann Smiley (MS Society Prince George Event Coordinator), Ken Biron (Facilitator, PG MS Self Help Group) and Marcy Moore (RN, MS Clinic of UHNBC) provided the content and edited the first Newsletter that the Prince George Chapter produced and proudly hosted on their website.  We hope you will enjoy this first attempt, and please stay tuned for the next one scheduled to launch in October at the MS Society's "VLAP" information session in October.  Enjoy!  To find out what a "VLAP" is, read the newsletter linked below in PDF Format.  If you need the reader to view, click here first.

spring2010newsletter-revised_april_-Official_one.pdf (application/pdf Object)


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Life redefined

On May 3rd 1999 at 6:30 am I woke up blind in one eye.  At the eye doctor, they murmured Optic Neurosis and sent me to the specialist and onto other doctors .  From that day on I have evolved and explored the new chapter in my life.  Somewhere along the way I decided I needed to make the planet accessible and start a goal towards Accessible Food, Shelter and Companionship.

Prince George has several food banks for its' citizens and visitors' use; Most are completely accessible, no cost to the user and everyone can access.  They help in many areas of life and provide a free meal with few questions.  We also have an active Farmers' Market down town for home grown products!

Not only does the "Farmer's Market" have that store front above, they have an open market every Saturday of the snow free months in the courtyard of the Provincial Court building.

In the Shelter part of things, Society had anticipated that I may become temporary homeless in the first decade of this disease.  The first place I discovered on that side of the street was the shelter operated by Active Support Against Poverty, ("Bridget Moran Place")  a street level support center dedicated to housing in Prince George.  There is one more shelter for males only ( Ketso Yoh) operated by the Prince George Native Friendship  Center (NFC).  For males who are in trouble with the law, there is "Activators" which is affiliated with the John Howard Society.  ASAP is the more disabled friendly of the shelters available for guys, plus ASAP is for both genders. 

Not leaving women out, there are a number of emergency shelters for females only.  AWAC is the 24-hour emergency shelter for women and female youth. They provide support, advocacy, and referrals and ask few questions.  The "Phoenix Transition House" is for women and their children in times of crises.  The E. Fry Transition House is run by the Prince George Elizabeth Fry Society as another shelter for at risk women and their children.  A pet program is available. 

At Risk children not accompanied by adults have places as well.  The "Friendship Home"  is run through the PG NFC and provides long-term residential opportunities for at-risk youth, 12-18 years, who are in the care of the Ministry of Children and Family Development.  They also provide clothing, shelter, and access to medical and educational services.  All Shelters provide meals for "residents" and ASAP provides an additional public lunch during the weekends for adults.  Prince George cares for the homeless and at risk population by providing free food and emergency shelter for its' citizens.  MS does live in those situations as well. 

Companionship is another aim of survival and that is usually accomplished by an individual drive.  For those who have problems with companionship, "Peer Support" groups exist for almost every human condition in the city.  Our MS Self Help Group fills the need for companionship for persons affected by Multiple Sclerosis in Prince George.  MS can be a very lonely condition.  No one quite understands our lives and challenges, even other MS affected people sometimes fail to understand us.  We listen though and sometimes that is enough to make us understand ourselves enough to survive, balanced in Food Shelter and Companionship.

DMT study

I just received an Email  from an MS Village contact requesting response from the Canadian MS Community who are currently taking Disease Modifying Treatments (*Specifically Rebif or Copaxone  for 1 to 6 years) for Multiple Sclerosis.  Please read and respond if you fit this criteria.

---

Hello,

I am sending this e-mail from MPI Research on behalf of the MS Village and we are inviting Canadians with multiple sclerosis who take the product Rebif or Copaxone to give their views on current and potential new treatments for MS.

Criteria for this study:

-          Must currently be taking Rebif treatment between 1 - 6 years presently.

-          Must currently be taking Copaxone treatment between 1 - 6 years presently.

This study is strictly a research project and your answers will be kept completely confidential.

 A monetary honorarium will be provided to qualified respondents who complete the survey.

 This survey will take approximately 30 minutes to complete, and will be:

·       Conducted by telephone at a time convenient to you

 If you would be interested in participating, please contact me toll free at 1-866-332-6696 so that I may ask you a few questions to see if this study is of interest to you.

 We are seeking participants asap. Therefore, you can reach me directly between 9:30AM-5:30PM (Eastern Standard Time) Mondays through Fridays.

Sincerely,

Chris Kyte

1-866-332-6696

Chris Kyte

Research Associate

MPI Research

181 Hymus Boulevard, Suite 202

Pointe-Claire, Québec H9R 1E9

May 2010-USA Gets to phone in

I received this through the Second Life Multiple Sclerosis Support Group. The phone information given here is mainly for my USA contacts who read this blog, know me at Facebook. But Wait a minute John in Kamloops! There is a URL listed below that is good for internationally MS affected people (MS Awareness is a global affair). Enjoy!  Updated 19 Feb 2018. Kept for historical purposes


More than 10,000 researchers and practicing neurologists from around the world gathered at the 62nd Annual Meeting of the American Academy of Neurology (AAN) in Toronto April 10-17. Nearly 500 presentations related to research efforts to stop multiple sclerosis, to restore function, and to end MS forever were given. National MS Society grantees were among those presenting novel findings on many different aspects of MS research.
A special research call covering Exciting New MS Research and Drug Developments, including Highlights from the AAN Meetings will be held Thursday, May 20th at noon SLT. During the 60 minute call, Dr. Stephen Krieger and Dr. Patricia O'Looney will be interviewed by EJ Levy, President of MS Hope for a Cure. We will hear about major highlights in MS research from the AAN meetings, including the latest-breaking research and new therapies and treatments in the development pipeline.
Stephen Krieger, MD is an attending physician at the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai Hospital and is Assistant Professor of Neurology. He is the recipient of a 2006 AAN Scholarship and the Sylvia Lawry Fellowship in clinical research from the National MS Society. Dr. Krieger is currently participating in research on a variety of MS clinical trials and is studying clinical research design. Dr. Patricia O'Looney has been with the National MS Society since 1988. She currently serves as Vice President of Biomedical Research, directing and overseeing the administration of the Society's biomedical research funding programs.

This information below is out of date, link does not work.  Historical purposes only

You can join the call by dialing 877.860.4996 and entering conference ID 69470471. No advance registration is necessary. If you are unable to participate, you can access a recording on the national website approximately two weeks following the call at http://www.nationalmssociety.org/research/research-news/ConversationswithMSResearchers/ind ex.aspx. If you prefer a CD or your internet connection does not support the file, you may request a copy of the CD recording by contacting ...

MS Answers- Iron supplements

with the popularity of Dr Zamboni's theory of CCVSI many folks taking iron supplements to aid them in overcoming many other complications in life might be wondering if they could worsen MS symptoms with those supplements. Here is yet another answer from the experts.

DO NOT quit or alter dose of your prescribed medications or DMT's without consulting your Health care provider...

MS Answers: "- Sent using Google Toolbar"

MS Answers: exacerbations or relapses

This is one thing that confuses many newly diagnosed MS patients... Another answer supplied by our partners at MS Answers... Be sure to sign up for these questions and remember that knowledge is power and the secret of overcoming the worst of MS is to know all about it.


MS Answers: "exacerbations or relapses"

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MS Answers

One of the hardest parts of this disease is the cost of the "Disease Modifying Treatments" (DMT's). If your drug costs are unable to be covered by Provencal Government Premium Medical coverage due to your income level being higher then what your Provence gives out monthly, the cost of the medications can be prohibitive. I think the least expensive one sits around $1700 for a month's supply. Even when covered for prescriptions, there are expensive treatments for more advanced stages of MS that are not covered in some provinces.

This answer from our partners at MS Answers will explain how to cover these costs in the absence of prescription coverage (*Canada only). As always, a clear answer can be obtained by discussing this with the MS Clinic staff. Your local MS Nurse or Neurologist will ensure you understand the cost and payment options.

MS Answers: "- Sent using Google Toolbar"