MS

Life’s meant to be…

a4006188cbe835b3047be497c9442726What’s life if it’s not meant to be beautiful, or happy?

It’s not about scraping through, it’s not about being just half of who or what you ever thought you’d be as a person. Nonetheless, it’s about rising above pessimism, difficult situations and learning how to be happy in a world full of new normals.

When I was diagnosed in 2005, I felt a burning need to help others in the same kind of situation I found myself in by informing them what MS is, what it feels like and how others can help.

Living in a different country, having to learn about the often difficult Irish healthcare system, creating and sticking to medication schedules and trying to remember hospital appointments, all happened in a blur at times. Looking back now, I wonder how I ever managed. To my surprise I learned in no time, simply because there was no other way I could accomplish what I set out to do before my diagnosis: rise the corporate ladder and enjoy life while doing it.

True, I was diagnosed with relapsing/remitting MS, the second less evil brother of the four types of MS, which means that attacks or exacerbations would come and go in a wave of strong or new symptoms, before returning with new or worsened symptoms. At this stage in my life, it’s hard to see any remission on the horizon, but it could have been much worse, like being diagnosed with progressive MS or ALS as part of Motor Neurone Disease. It could have been a brain tumour, damage in the brain or spinal cord, or even a genetic disorder. Subsequently, yes… it could have been much worse. Continue reading

Positive MS News: March 2015

brain-animation

Yes, here’s the March edition already! I will try and update the post each week as it will be a busy month ahead with Brain Awareness Week in Ireland, National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and the US National Multiple Sclerosis Society’s MS Awareness Week.

The big news this week is/has been all about coffee. According to the American Academy of Neurology, drinking coffee may be associated with a lower risk of developing multiple sclerosis (MS). Coffee intake may protect against MS, supporting the idea that the drug may have protective effects for the brain,” said study author Ellen Mowry, MD, MCR, with Johns Hopkins University School of Medicine in Baltimore and a member of the American Academy of Neurology.

While it will not help us already diagnosed, it helps others see how MS perhaps can be avoided. Either way, I will continue drinking coffee, and feed my Starbucks hunger for more. MS or not, keep enjoying that cuppa!

Highlight!

  1. Can Coffee Reduce Your Risk of MS?
  2. Coffee may protect against MS and 5 other ways it’s saving your life
  3. Daily Coffee Could Lower Your MS Risk
  4. More Support for Coffee’s Neuroprotective Effects

Research news

  1. Clinical associations between gout and multiple sclerosis, Parkinson’s disease and motor neuron disease: record-linkage studies
  2. ‘Miracle’ stem cell therapy reverses multiple sclerosis
  3. Pathological Progression of Multiple Sclerosis Documented For The First Time
  4. Spinal Cord Alteration in Multiple Sclerosis Could Lead to New Therapeutic Target

Clinical trials

Medical treatment news

Business news

MS Organisations

Diet

  1. Anti-Inflammatory Diet for Multiple Sclerosis
  2. 5 Nutrients Low in Women with Multiple Sclerosis
  3. Likelihood of MS, Other Autoimmune Disorders in Women Increased By Mercury in Seafood …
  4. Cinnamon Can Reduce Symptoms of Multiple Sclerosis

General news

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Clinical trials explained

 NordForsk_Clinical Trials_01phases

In the UK, it takes over 12 years to develop a new medicine to the standards of quality, efficacy and safety laid down by legislation. It typically costs £1.15 billion to do all the research and development necessary before a new medicine can be licensed for use.

The majority of medicines under development never make it to the market; following thorough studies, they may be found to have unacceptable side effects, or they don’t work any better than existing treatments.

Timeline of medicine development

For every marketed medicine that makes enough money to pay for its development, about 25,000 chemical compounds were tested, on average 25 of these will have gone into clinical trials and five received approval for marketing.

Our timeline of medicine development shows the stages a medicine has to pass through before it can be approved for marketing.

For more facts and figures about the pharmaceutical industry in the UK visit the Knowledge hub section of this website.
By law, all new medicines must first be tested on animals, in order to ensure patient safety, learn more in the Animals and medicines research section.

Research and development

The pharmaceutical industry globally invests more in research and development  R&D) than any other industry – £13.3 million every day. The pharmaceutical industry employs around 23,000 people in R&D in the UK (OHE calculations based on ONS, ‘Business enterprise research and development’ (2008, 2009, 2010, 2011) accessed March 2013.

For more:
ABPI, Bringing Medicines to Life

Clinical trials and medical research – Phases of trials

CenterWatch

Search Clinical Trials

Patient Notification Service

To be continued

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Positive MS News: February 2015

Image research

Time flies, as we’re once again nearing the end of February. It’s been an attention-grabbing month, with several positive news stories about treatment and also, about a rather interesting collaboration between Google and Biogen Idec.

First of all though, I wanted to add a link displaying how many clinical trials are ongoing as we speak. So dig in, and feel a little bit happier knowing that each day, a lot of people are seeking and working towards better treatment.

Additionally, I added two new categories to the list, news about MS Organisations and Diet also.

Highlight!

  1. Data Visualization Displays 142 Ongoing MS Clinical Trials
  2. MURDOCK study confirms Google partnership
  3. Google, Biogen Seek Reasons for Advance of Multiple Sclerosis
  4. Google Inc (GOOG) And Biogen Idec Inc Join Hands For Multiple Sclerosis Research
  5. Google, Biogen will use wearable sensors to study multiple sclerosis
  6. Google, Biogen Idec Unite to Bring New Research to Multiple Sclerosis

Continue reading

The miseducation of…

2a368fe3a25dc33b8327e836159894ecIt’s all been a bit crazy since that first day of the New Year came peeking from behind that cold, frosty door. It’s now an icy, jaded Saturday morning in the north-west of Dublin, and the RBS Six Nations rugby tournament just started.

Utter bliss so. Red cheeks from absolute delight.

On Monday, I have a new appointment with my neurologist, and with two separate eye doctors in hospital a few days later. Somebody should let me hire a very fancy suite in the hospital, as there’s no point going home and back again twice afterwards, especially since my energy supply is limited.

Am I dreading my neurological check-up? In a way, yes. After 8ish years on my DMD (Disease Modifying Drugs) Copaxone, it just doesn’t work anymore. The four-month relapse last year was proof enough. The idea of relapsing again is a scary one indeed, so I aim to find the right words and ask for an upgrade of my therapy. Continue reading

Positive MS News: January 2015

clinical

The first month of 2015 has come and (almost) gone again. With that, it’s full steam ahead in the field of MS research, clinical trials, business news and interesting, general newsworthy bits and pieces.

This month, the highlight was the news about MS and stem cell treatment, providing a decent outlook for those looking for alternative treatment. I’ll keep following this news throughout the year, and in the meantime, check out the Highlight! section where the news was published, with usual news stories further down this web page. Continue reading

10 Powerful Lessons I’ve Learned in 2014

New Year’s resolutions are about looking forward to 2015, but I want to stand still for a few minutes to look back at 2014. Many positive things happened on the writing front, but sadly, as Isaac Newton’s third law of motion goes, I ended up with a four-month relapse. Action and reaction played out in perfect unison, so.

After a very relaxed Irish Christmas and New Year’s holiday, 2015 is off to a great start. Determined not to let 2014 end in utter silence, the following 10 lessons can perhaps be a guide for this year also.

If people can’t handle you at your worst…
‘Normal’ life without a chronic, neurodegenerative illness can be hectic enough. However, if you have an illness that causes a progressive loss of neurological functions, life becomes truly demanding and gargantuan. So stand up for yourself, and quote Marilyn Monroe if need be, “If you can’t handle me at my worst, then you don’t deserve me at my best.”  I’ve come to live by that maxim, and it’s empowering once you know you deserve better people in your life. Continue reading

Dream, Think, Believe, Dare, Do!

live live imageTo say that life can be funny is, well… funny by any stretch of the imagination. Time is just flying by without it taking notice of those who want to enjoy it that little bit more, or live it that little bit longer. And as I get older, I am trying to cram as many experiences into one day as possible, or even in one year.

There are personal goals that need to be met, articles that need to be shaped into something clear, concise and uplifting, and if possible, new connections to be made. No man’s an island, and as waves come and go, so do we. Continue reading

#FestifyMS your desk Christmas appeal

Image Festify MS Ireland

You might think, “Not another picture about MS!?”

You’re right. It is another picture about MS. This one however, is different.

I hope that after reading this article, you will have learned how the Irish MS society (also called MS Ireland), is able to provide hope where there’s none, not only through utter commitment and hard work, but also with quiet strength. Continue reading

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