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Friday, October 23, 2009

Halloween’s almost here! Costume ideas for wheelchair-users


As a way of coping through the years, or maybe I’m just obsessed, but costuming - all cleverly worn from my wheelchair - has become a big time passion of mine. Over the years I’ve dressed-up from everything from a landlocked mermaid (who had no choice but to use a wheelchair, fins = can’t walk, which was a clever way I worked the wheelchair into the costume) to “Pris” from Blade Runner.

A costume is a great way for wheelchair-users to level the playing field. A costume can help able-bodied folks, who may have been uncomfortable around your disability otherwise, to open up and talk with you. Costumes can even make your disability go away, with people focusing on your costume (and awesomeness!) instead of your disability. I’ve witnessed this several times and it’s awesome!

Continue reading about Wheelchair costumes


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International Travel for Wheelchair users

Easy Stand Blog

Craig and I are lucky to have visited several wonderful international destinations, but our wish list is long and we’re still newbies at accessible international travel ourselves! We’ve been to several cities in Mexico, Scotland and England together, and apart we’ve covered at least another ten countries on top of that. Our expertise and knowledge is mostly in the 50 United States (yes we’ve been to all of them, and love those two off-continent states dearly!), so when discussing international travel we rely on our huge network of friends in the industry that we’ve met over the years, and thankfully this number is great thanks to several expos and networking groups we’ve been a part of.


A Poem from Theresa on the Univited Guest - "M.S."

Dear Stuart, after reading your notes I do believe that you are right. My talk about His Voice his face, I am speaking about my doctor who knew that my aunt had MS and I was deathly afraid of getting it. My father was decidedly upset and I can see the pain in his eyes. After the doctor gave me my diagnosis I went out and bought a bottle of Chivas Regal, drank half a bottle, went outside and shook my cane that God and yelled in the sky stating my anger (Kubler-Ross stages of reaction) -- anger, denial, bargaining, acceptance. I am a person who goes through all of the stages in one night. When I was yelling at God it was to ask the age old question of why me? And if so, to leave my children alone! If I did indeed have MS, I wanted him (God) to give it to me (MS). I do apologize for the use of the word f**. While writing this free verse poem, I relived all of the feelings I had. The bed in question Is a single Clinicron bed that is made of sand with an enormous amount of air circulating throughout. Theresa


I knew, from the very beginning
I knew. The look on his face
The sound of his voice
The different ones
my father's eyes - Chivas regal getting drunk getting - mad yelling at God
He wanting me to see more of them - hospitals doctors nurses therapists
My legs - too heavy to move - falling - tripping - bruises.

the canes - pretty ones - silly ones - practical ones homemade ones - family ones
for balance and so no one thinks I am a drunk.
The walker
no balance
The vertigo
The shame. humiliation. independence. no privacy. questions. Pity and more pity anger denial betrayal sadness disbelief abandonment why why me?
The pills and more pills and shots tests and more tests and opinions and decisions and more tests IVs Medrol ugly ugly ugly lonely lonely lonely
The wheelchair - The electric wheelchair. Blueberry blue
My mom - my mom my mother- her hurting - our pain - my mother - her baby, me
too tired to walk - still working.
My stupid bed easy for caregivers a singular prison just for me
My vision
Hospital - monthly visit - monthly poison - monthly tests -monthly opinions
the special computer - my little world - my ugly world - my private world
My only love - 35 yrs not too late - am I selfish - e-mail - telephone - photographs
Multiple Sclerosis - dirty words Multiple Sclerosis - Primary Progressive dirty words - bad words - Multiple Sclerosis

Theresa Dould Cummings© 10/19/2009

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A European panel has started a review of controversial Multiple Sclerosis drug Tysabri

2nd UPDATE: EU Reviewing Biogen, Elan's Tysabri; Cites PML

Oct 23, 2009

By Thomas Gryta


NEW YORK -(Dow Jones)- A European panel has started a review of controversial Multiple Sclerosis drug Tysabri, sold by Biogen Idec Inc. (BIIB) and Elan PLC ( ELN), citing a much higher number of rare brain infections than previously disclosed.

In a statement, the European Medicines Agency's Committee for Medicinal Products for Human Use, commonly called CHMP, reported that there are 23 cases of progressive multifocal leukoencephalopathy, or PML, since the drug's launch. Previously, there had only been 13 confirmed cases of the infection since the drug re-entered the market in 2006, following an 18-month removal that was prompted by a link to three previous cases of PML.

Continue reading this Tysabri news from

Read also the Bloomberg report found here

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'Medical marijuana' is a Trojan horse

By Charles Lane of the Washington Post

My post about “medical marijuana” stirred a lot of comments, some of them approving, the vast majority hostile and vituperative -- and one or two actually threatening. So, let me try this again. As I wrote, I think decriminalization of marijuana is worth debating. I have no objection to letting AIDS patients and other truly desperately ill people smoke marijuana if it makes them feel better. I have no objection to the administration of THC, pot’s active ingredient, in properly tested and dosed pharmaceuticals. What I do object to, strongly, is the claim that smoked marijuana is some sort of wonder cure with a multiplicity of proven, but officially repressed, therapeutic uses.

Continue reading by clicking here

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

LDN (Low Dose Naltrexone) Awareness Week for those in the UK

Information obtained from John H of the MSRC-UK

LDN Awareness Week

LDN petition to 10 Downing Street

As part of LDN Awareness Week please could you sign the LDN Petition asking the UK Government to use funds from the NHS budget to undergo trials for Low Dose Naltroxene in Multiple Sclerosis

Only proviso is you need to be a UK resident.

Please spread the word through your contacts, friends etc!

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

Thursday, October 22, 2009

'Life-Changing' MS Drug Could Save NHS £300 Million A Year, UK

Article Date: 22 Oct 2009

The lives of 100,000 Multiple Sclerosis sufferers in the UK could be greatly improved while saving the NHS £300 million a year.

The claim comes from the LDN Research Trust ahead of the first International LDN Awareness Week which begins this monday.

Low Dose
Naltrexone, or LDN, is already available on the NHS but not all GPs are prepared to prescribe it to treat MS - Naltrexone has been approved by the Food and Drug Administration (FDA) for treatingalcoholism and drug addiction. LDN uses around 1% of that dose to treat MS.

Free Software Helps People with Limited Dexterity Stay Connected

myMSmyWay logoOctober 2009

Free Software Helps People with Limited Dexterity Stay Connected
By Ellen Kampel & John M. Williams

For some people living with MS, limited dexterity or fatigue can make using a keyboard or mouse difficult, if not impossible. But with a relatively low-cost input device and free software offered by the Sue Center, people living with MS can communicate with one another on the computer without the use of their hands. For more information, read this month's Tech Connect column.

Technology Tip of the Month: Digital Recorder

“I use a digital recorder to jot down notes of things I need to remember. When I get home, I hook it up to my computer to download the notes and play the ones I need to remind myself of.” – Harold D.

Technology tips are submitted by people living with MS.

Do you have a technology tip of your own? If so, we want to hear from you. E-mail your technology tip, first name and last initial to Select tips may be posted on


NARCOMS Newsletter and Survey

The October 2009 NARCOMS newsletter is available for viewing online. It can be printed and viewed by going to There is a ‘Newsletter’ link located at the top of the NARCOMS Homepage. We hope you enjoy this new addition to the registry.

If you have any questions or comments, please don’t hesitate to call us – we are always glad to help. Please add to your address list to ensure that future emails from NARCOMS reach your inbox.

Also - The NARCOMS Fall 2009 Update Survey is currently available at

The Staff at Narcoms wants to thank you for completing the survey at your earliest convenience.


Wednesday, October 21, 2009

*** MEDIA ALERT *** - EMD Serono Launches

-- Web site Connects People Living with Multiple Sclerosis --

Get to Know 5 Real People Living with MS

What: Hear their stories. Learn their challenges. Find out more.

Today, EMD Serono launched a new Web site for people living with multiple sclerosis, “How I Fight MS” ( The new resource allows people living with MS to share in the journey of others as they live victoriously with MS. Meet Kimberly, Jen, Bill, Lisa and Julie – people who have made a decision to live life and not MS – and get an inside look at their lives as they continue their journey.

“How I Fight MS” offers people living with MS the opportunity to connect with those facing similar challenges in their life. With regularly updated features such as video blogs and photos, “How I Fight MS” allows people living with MS to connect on a deeper level with others sharing in their fight against MS.

For the initial launch of “How I Fight MS”, some of the features of the Web site include:

· Weekly video updates

· Blogs

· Photos

· Music playlists

· And more!

For More Information: Check out the Web site at

For any questions related to the Web site, please contact Melissa Hill,, 781-681-2719.


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If you have available time to volunteer for MS Views and News, we seek people who have regular access to a computer and knowledge of the internet. Knowing of Education or Health related Grants or of Family Foundations, is a plus, but not necessary to help us find what we need.
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Please reply to Stuart -
Stuart Schlossman

Narcoms = North American Research Committee on Multiple Sclerosis

Information provided by Vicki Pomeroy in Ga.

Not yet a NARCOMS participant?

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

Tuesday, October 20, 2009

GENETIC Biomarker May Have Potential to Help With Diagnosis, Treatment of Multiple Sclerosis

Genetic Clue May Predict Multiple Sclerosis Severity

By Jennifer Warner
WebMD Health News

Oct. 19, 2009 -- A newly identified biomarker may be linked to the severity of multiple sclerosis and may one day help with diagnosis and treatment of the often frustrating and unpredictable disease.

Click here to continue reading


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Monday, October 19, 2009


If you are looking to learn more about MS therapies, the TYSABRI Teleconference and Webinar series may help you make a more informed decision.

Teleconference Series

Dial in to hear TYSABRI patients share their personal experiences—from the impact that TYSABRI has had on their lives to details about their infusion experience.

Webinar Series

Dial in to hear a physician discuss treatment information, such as the importance of starting treatment early, the benefits and potential risks of treatment, and how treatment can have a positive effect on quality of life, as well as to hear a panel of TYSABRI patients share their personal experiences.

In both the TYSABRI Teleconference and Webinar series, you'll also have the opportunity to submit your own questions anonymously to the panel and have them answered live, all in the comfort of your own home.

Dates and times for the 2009 Teleconference and Webinar series are listed below.

Call 1-866-644-8540 10 minutes prior to the start of each teleconference and webinar to enroll.

For the webinars, you will also log in to view the slide presentation for the program. Go to:, click on "join meeting" and enter the meeting number for the webinar you would like to join.

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Sunday, October 18, 2009

2010 World Stem Cell Summit

Taking place in Detroit Michigan

Click this link to read this article


MS related: Medical marijuana legislation growing throughout country

As more states debate medical marijuana policies, research at LSU Health Sciences Center-New Orleans offers new insights into how marijuana may affect people who suffer with HIV and AIDS.

The study looks at how long-term use of THC, the primary active chemical in marijuana, affects the progression of an animal disease similar to HIV in the immune system as well as appetite and behavior in animals affected with the disease. The animals receive THC injections twice a day for up to a year.

"Early findings suggest that, as far as the immune system is concerned, (THC) does not accelerate disease progression," said Dr. Patricia Molina, a professor and head of the physiology department at LSUHSC-New Orleans.

Click here to read more