Tag Archives: Multiple Sclerosis

#strongerthanms with MS Ireland

World MS Day image 2015“So, how’s the book?”

I don’t lack ambition to keep on writing, but I have an over-abundance of low energy levels, so I must ask people to use their patience… patiently when dealing with me.

Like all cowards, the illness I write about lurks in the dark within my central nervous system, and it sometimes rises to the surface in unflattering ways. My body does a good job in concealing it for now, but every so often I worry about it rising to the surface and staying there… permanently. Continue reading

World MS Day 2015 Around the World

MS Day 2015For the second year in a row, Access is the main topic of World MS Day.For a quick look at what Accessibility meant to me in 2014, please click here.

Access means a lot of things, so do volunteer in if you want to help others achieve every day issues. Don’t forget to tag your events with #strongerthanMS and @WorldMSDay.

Access

Our campaign theme for 2015 is access: access to diagnosis, treatment and support; access to buildings, travel and leisure facilities; and access to education, training and employment.

What does access mean?

When we talk about equality of access for people with MS we mean access to a social, political and economic life. Equality of access doesn’t just mean physical access to buildings, but access to the same tools, services and facilities that people who do not have MS enjoy.

Why access?

The barriers to access faced by people with MS vary depending on where they are and what their symptoms are. We would like to reflect this variety by sharing different people’s experiences of access barriers around the world. We hope this will help people understand the complex nature of MS and help unite the global MS movement.

Examples of access issues

  • Facilities
    There’s only one MRI scanner in your country and it’s a 10 hour drive away.
  • Treatment
    A treatment is available for your condition but it’s too expensive.
  • Medicine
    The medicine you need isn’t available in your country, even though it is in other places.
  • Social life
    When you meet new people it’s hard to decide how to tell them about your MS.
  • Family life
    You worry that your partner will leave you when your MS symptoms become less manageable.
  • Jobs
    You want to work but your boss doesn’t understand MS or how to help you.
  • Relationships
    Because of your MS you worry about finding a partner who will understand you.
  • Public transport
    The buses in your area don’t have ramps or spaces for wheelchairs.
  • Children
    You worry that your children will lose out on opportunities because they’re caring for you.
  • Work
    Disability legislation in your country doesn’t include MS.
  • Understanding
    Your children don’t understand why some days you can’t run around the park with them.
  • Buildings
    Your have to go up a flight of stairs to see your local doctor and there’s no lift.
  • Information
    You’ve been diagnosed with MS but you have no information about treatment or support in your own language.
  • Specialist doctors
    There’s a shortage of neurologists in your area, you have to wait six months to see one.
  • Getting around
    There are days when you can’t walk without help, but your government doesn’t give walking aids away and you can’t afford to buy one.
  • Education
    You want to go to college but you don’t think you can work while you study to support yourself.

For updates on what is happening around the world, please click here.​___________________________________________________________________________________________________

Hope cures old wounds

10505565_271992656337777_3335423019850516985_n‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the better jokes I can actually remember, as I simply don’t do long ones.

MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline: “the illness is mine, but the tragedy theirs” when asked how the family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.

Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life at times resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.

And boy, does it go on. Continue reading

MRI scans, hope or defeat

MS images

A war zone. It sounded like a war zone. Sound effects of an AK47 gun amid MRI vibrations and banging noises usually taking place on construction sites. Tinnitus adding an overlay I can miss like never before.

Magnetic resonance imaging is a godsend to ill people. In regards to MS, it gives a clear view on what is physically going wrong inside the brain, spinal cord and optic nerves. Add some contrast fluid, and yours can lit up like a Christmas tree, just like mine did this morning. Or so I was told.

Sudden, loud sounds twitches my head involuntarily. The upstairs part of my body locked in a mask, I now realise how Leo felt when he played The Man in the Iron Mask. Continue reading

World MS Day 2015

WMSD2015

For more on World MS Day 2015, check these links:

Twitter – Tweet @WorldMSDay and/or use #strongerthanMS

Facebook – World Multiple Sclerosis (MS) Day

Instagram – worldmsday

YouTube – World MS Day

Pinterest – World MS Day

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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/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©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: April 2015

kinex-clinical-trialsResearch news

  1. Miconazole and clobetasol may be effective as multiple sclerosis therapies
  2. Drug Derived From Sea Anemone Shows Promise Against Psoriasis, MS
  3. Novel Drug From Nature Shows Early Promise
  4. ‘Brainbow’ illuminates cellular connections
  5. MS Association of America releases 2015 multiple sclerosis research update
  6. B Vitamin Promising in Progressive Multiple Sclerosis
  7. Phenytoin protects against optical damage in multiple sclerosis
  8. Could Eczema Cream Be Used for Treating Multiple Sclerosis?
  9. URMC Start-up Takes Aim at Memory and Cognitive Problems
  10. Controversial stem cell treatment for multiple sclerosis
  11. Key Cytokine Discovery May Shape Future MS Treatment
  12. The UpBeat: One of the ‘super heroes’ encouraged by promising MS research
  13. Drugs that activate brain stem cells may reverse multiple sclerosis
  14. Novel Mechanism May Prevent Onset of MS in Immune Cells
  15. French firm announces multiple sclerosis drug breakthrough
  16. A Missing Subset in ME/CFS and Fibromyalgia Revealed? Take the Disease Course Survey
  17. Stem Cell Transplant Reduces Multiple Sclerosis Disease Activity
  18. Seizure Medication Reduced Optic Neuritis In Multiple Sclerosis
  19. Tisch MS Research Center Of New York Reports Early Improvement In Stem Cell Trial
  20. Public Release: 22-Apr-2015 Researchers discover new drugs to combat the root cause of multiple …
  21. Progressive MS Pipeline Slowly Filling With New, Experimental Therapies
  22. Important Multiple Sclerosis Research Grants Announced
  23. Promising New Therapy for Multiple Sclerosis Based on Placenta Cells

Continue reading

The difference between ALS and MS

 ALS

AMYOTROPHIC LATERAL SCLEROSIS (ALS)

ALS is a form of motor neuron disease. It involves the loss of the actual motor nerve cells. The nerves affected are in the spinal cord and those that travel to the voluntary muscles, so there are symptoms of both central and peripheral involvement, with weakness and wasting in arms, legs, and mouth/throat (bulbar). ALS is a rapidly progressive and fatal neuromuscular disease.

MULTIPLE SCLEROSIS (MS)

Multiple sclerosis (MS) is an unpredictable – at times disabling – disease of the central nervous system: which consists of the brain and the spinal cord. The disease attacks the protective myelin covering of the central nervous system, causing inflammation and often destroying the myelin in patches. The severity of MS, rate of progression, and specific symptoms cannot be predicted at the time of diagnosis. Continue reading

10 years: a lot to be thankful for

Inspirational Quotes 4

Ten years ago today, and 2.5 years after moving to Ireland, I was diagnosed with MS, an incurable, neurodegenerative illness that would change my life in ways I never imagined. Needless to say, it was an unwelcome event. Little did I know, however, that it would eventually lead to a life well lived.

There was no manual that showed me how to adapt, accept and live with a chronic illness. MS, associated with 50+ different symptoms, impacts each patient differently. There are numerous symptoms I might never have at all, and that in itself gives hope. Continue reading

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