How Expensive is MS?

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I am so spoiled, so incredibly lucky. I am involved a clinical trial for MS and that means I don’t have to pay for my medication. At the beginning of the trial, I asked one of my nurses how much something like this would cost, if I had to pay out-of-pocket, if I wasn’t involved in the study. She told me about $80,000.00 and I thought my eyes were going to pop out of my head. I’ve lived in houses that cost less than that!

My heart breaks for Jason Da Silva, and once again I don’t understand the American Health Care system. Why do they feel so threatened by a system like we have in Canada? What’s so awful about allowing people access to free (or at least subsidized) medical care? Why do so many American people and corporations seem to think Obama is the devil for wanting to create a system like ours, in the US? If you have any ideas, tell me, because I’d sure like to understand.

Project for Awesome – Youtube-er against MS

Caution: Fluffee drops the F-bomb in this video so if you are offended by the F-word DON’T WATCH the video. Just go to the link I’ve posted below to donate to the MS Society of Canada directly if you want to help support their efforts against MS.

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I love “Project for Awesome!” Fluffee is a bit of a goof but he does a good job of laying out how MS can affect people’s lives. I wonder if he’s sold his piece of chair yet? Or the beanie lol?

If you want to donate directly to the MS Society of Canada, click the link below to be taken directly to their donation page. It’ll pop up in a new window. Spend some time checking out the rest of their awesome site while you’re there, too!

Click here to donate to the MS Society of Canada directly

New Breakthrough In MS Medication!

Woot! I thought this was pretty cool. I found this article on “Medical News Today” and I wanted everyone to see it even if I can only show the first two paragraphs here:

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First Oral Treatment For People With Multiple Sclerosis Approved In Canada

Main Category: Multiple Sclerosis
Also Included In: Regulatory Affairs / Drug Approvals
Article Date: 11 Mar 2011 – 2:00 PST

Novartis Pharmaceuticals Canada Inc. announced that its new MS treatment, Gilenya™ (fingolimod), has received Notice of Compliance in Canada. Gilenya™ (fingolimod) is the first disease modifying oral therapy developed for the relapsing-remitting form of multiple sclerosis (MS) which is the most common type of the disease in adults. Unlike current therapies which all require daily or regular injections or infusions, Gilenya offers simple once daily oral dosing (0.5 mg) in a capsule, providing an efficacious and convenient treatment method for a complex and lifelong illness. Gilenya is approved for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them.

“The approval of Gilenya is a significant milestone for the Canadian MS community,” says Dr. Daniel Selchen, a neurologist from Toronto, Ontario. “Oral therapies have been greatly anticipated by both patients and physicians who are eager for alternatives to injection and infusion therapies. With its excellent clinical trial efficacy data, along with convenience, Gilenya is welcome news for those seeking a new option to manage their disease.”

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Please read the whole article by clicking HERE – it’ll open in a new window for you.

I’ve never had a problem with needles (thank goodness) but I have friends who pass out if they catch a glimpse of a puncture on TV. An oral medication would bypass the whole group of self-injection issues pretty handily, I think. There are (as usual) side effects, and the drug isn’t appropriate for everyone, but wouldn’t it be amazing to just be able to take a pill instead of dealing with injections or infusions?

It’s not a cure for MS, but it apparently does slow progression. It lowers the white blood cells, so does that make it an “immuno-modifier” or an “immuno-supressant?” In either case, you’d have to be careful when around other infectious people (like we’re not already!) and you’d have to decide with your doctors if this is the right treatment for you. I wonder why would it only be approved “for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them?” It seems like a simpler treatment than most of the others I’ve heard about.

What do you think? Does this seem like a good idea to you? Is it something you’ll ask your doctor about? Is anyone involved in the Clinical Trial for this medication, or has anyone been put on it through their doctor? I’d love to hear what your experiences are.

MS and Cognitive Impairment

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In this video I talk about the cognitive impairment associated with my MS, and how it’s helped me take myself less seriously while (weirdly) improving my methods of goal setting. Watch it and let me know what you think by clicking the “comments” link below.

How to Live Abundantly with MS

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The more research I do into MS the more personal Heroes I find. How amazing to know that there are so many people out there who do not consider themselves “victims” of a disease, who don’t lose hope, who still love themselves and their lives even when facing issues that might emotionally cripple other people. The author of this article is “planning her next remission” while lying in bed during a relapse. How amazing is she?! Read what she has to say and let me know what you think by hitting the “comment” link below.

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Living Life Fully and Abundantly with MS

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Diet and MS

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I was doing some research on how diet can affect MS, and I came across this article that pretty much describes why I started wondering whether or not the food that I eat could affect my energy levels. It stands to reason that it would, I think. Take a look at this article and tell me what you think, about the concept of disease management through diet, by clicking the “comment” link below.

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Multiple Sclerosis Diet Therapy – Does Diet Really Make a Difference?

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Don’t Be An MS Fatigue Martyr!

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This article made me snicker, not because of the content but because of the ATTITUDE!

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Your Battle Plan for MS Fatigue

Fatigue is probably one of the most complained about Multiple Sclerosis symptoms. We’re not talking about some ordinary fatigue here; but fatigue that incapacitates you physically, mentally, psychologically and emotionally as well. As if having Multiple Sclerosis wasn’t depressing enough, the degree to which your already low reserve of energy and strength is sapped is sufficient to halt any and all activities and often does.

Did you have a plan to do this or that? Well guess what? There’s a very good chance it may not happen. At least not when you had originally planned. Of course, if you’re the one with Multiple Sclerosis, we’re preaching to the choir here. You already know how it can profoundly affect your daily activities, but you should also be encouraged to know that you can do something about it. If you want to counteract the way fatigue impacts your daily life, read on. Continue reading