Author Archives for Billie

About Billie

Things published on my blog might not always be pretty as punch, but it's definitely the unvarnished reality of life with MS.

Book lovers, unite!

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I have always imagined that Paradise
will be a kind of library.
(Jorge Luis Borges)

If this yesterday’s long list of Firefox bookmarks was anything to go by, you’d have taken me for a very active library assistant waiting impatiently to sort non-fiction books according to the Dewey Classification again. It left me mesmerising out loud that you can take the girl out of the library, but you can’t take the library out of the girl. After all, I was destined for librarianship in some shape or form from early in life.

And that’s what I ended up doing: studying library sciences. Via word of mouth I then moved to different libraries to update and integrate their manual indexes, lists and catalogues with electronic ones. Often Herculean at best, since each library had thousands of books, CDs, videos, newspapers and other items waiting to be added. Continue reading

Blurred notes to self

10446626_493205107477168_3492364098128049118_nSunday evening, as always a short look forward to the coming week, and a long goodbye to the past three weeks. There’s the usual MS fatigue and some added black-and-white-being-fed-up always having to repeat myself. In other words, today has been, and still is, all about ‘out with the old, in with the new’ but not before letting off some steam.

In a recent post for the blog of the Irish MS society, I used one of my favourite quotes by Lewis Carroll, “I can’t go back to yesterday because I was a different person then.”

I wrote about being a different person pre- and post-diagnosis. Being diagnosed was a super-charged emotional rollercoaster ride, the ride hurdled forward by the passing away of six family members (including my only sibling, Nana and stepdad) the following 3.5 years and by turning single again. Let’s just say that before being able to get up and crawl on my hands and knees, I was knocked sideways again, six times over. Continue reading

Eyes: pure vision

imagesEyes.

We use them to learn, navigate, assess and appreciate. They help our brain understand our environment and sometimes, as peculiar as it sounds, we use them to listen.

Louis Braille, Stevie Wonder, John Milton, Jorge Louis Borges, Galileo Galilei, Eamon de Valera, Johann Sebastian Bach and many others had eyesight issues. Some managed to produce works of pure genius like John Milton did when he wrote his epic Paradise Lost after he became blind at the age of 43 in 1651. He bent a negative event into a positive one, something that many since Milton have done, and done well.

When one or both start being a nuisance, you certainly feel apprehensive. I’ve been wearing glasses since age 6, and contact lenses since age 20. I should be well-used to handling them so, but I am acutely aware of the tricks eyes can, and in fact, do play.

Continue reading

Medical Apps for Clinicians

285x285_Best_MS_Apps_2014_12MS @Point of Care
MS @Point of Care presents valuable information in an easy-to-digest format. MS @Point of Care is a series of chapters and other tools that aid in making informed decisions regarding diagnosis, treatment, and symptom management.
Available on iPhone

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MS Diagnosis and Management
The Multiple Sclerosis – Clinical Care app is designed to be a handy tool for neurologists, resident physicians, and other healthcare providers to aid in the diagnosis and management of MS. Continue reading

10 Useful MS Apps

285x285_Best_MS_Apps_2014_12EDSS Calculator
The Toronto EDSS Calculator helps healthcare professionals and researchers compute the Expanded Disability Severity Score (EDSS) for patients with Multiple Sclerosis. The application facilitates the rapid and accurate calculation of the EDSS using Kurtzke’s algorithm.
Available on Android, iPhone and iPad Continue reading

MS Treatment Apps

SymTrac-free-iPhone-app-helps-sufferers-of-MS-Android-soonAs we become more mobile as  time goes on, we also want more access and availability of our medical history and treatment plans wherever we travel. Pharmaceutical companies spend a lot of money making such apps as inclusive as possible, with some true digital gems.

This post is about MS treatment/wellness apps, whereas part two will be about medical apps in the broader sense of the word. If you find your treatment or country isn’t up-to-date in the list, bear with me/big pharma please, as apps might be in the early stages of development. I will keep on checking for updates though, or if you know when/where I can find links, do give me a shout! Continue reading

MS Quiz

3Feel like a little quiz on MS?

Go here to test your knowledge on what MS is, what it does, and what symptoms can be part of MS.

The quiz is short, so in just 10 questions you can find out if you need to brush up your knowledge somewhat or if you are on top of your game.

Good luck, and don’t forget to share your results!

©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.

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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About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with a MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

© 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.

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