Tag Archives: Awareness

💋 Kiss Goodbye to MS 2017 💋

s3dmvsjpwzpbtbpf2yepqgcsovic3hfh_gblfgsfq4m-300x252I agree it has been fairly quiet here. A lot has happened the past few months which required the usual RRS, the almighty Rest, Relaxation, and Sleep. New things are still taking shape, so do hang around or drop me an email.

💋💋💋 Pucker up in the meantime in February! Go RED to KISS GOODBYE TO MS, the global fundraising campaign, supported by MS Ireland also. Donate €4 to MS research when you text Smooch to 50300 💋💋💋

New posts will appear soon, though, so keep an eye on your email or WordPress account!

Talk soon!

Willeke

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©WVE and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Positive MS News: May 2015

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New additions: news about MS and diet, exercise etc. More will follow soon!

Highlight!

  1. Hawaii Legislature approves medical marijuana dispensaries
  2. Medical marijuana registry in Quebec called world’s first
  3. Texas Senate Approves Medical Marijuana Bill
  4. State health officials unveil new marijuana dispensary rules

Continue reading

Books, Ireland and a few blanks

Yeats Sligo

When asked what a review of my life would look like, I’d inevitably request that poetry be added to Smile, by Charlie Chaplin; classical music to moments of newly found strength and that slapstick moments appear in the Odd News paragraph. Neither would offend my sensibilities, as I can pack a good few things in that large, worn suitcase of a weary dreamer, in my mind that is a lost and found lover of the arts, and of course, of books, libraries and any kind of Psychology. Continue reading

Volunteering, a worthy cause

volunteers

Sometimes things happen in life you never saw coming. And sometimes, you feel utterly defenseless because you simply couldn’t step in to help.

But what if you create something good out of something so bad?

Continue reading

A powerful letter to my MS

Multiple Sclerosis.

You’re here.

Not residing anywhere else but here, inside me.

Nine years and counting. Probably a lot longer if you really want to play dirty.

Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was too tired to go upstairs. Did you now, did you truly think it was slapstick-funny?

Continue reading

International Trigeminal Neuralgia Awareness Day

International Trigeminal Neuralgia Awareness Day on October 7th 2013:

Today is the first Trigeminal Neuralgia Awareness Day, please watch this video
and sign the petition to get the World Health Organisation to add this to their ‘Health Topics’ lists
to get more research and funding into this debilitating symptom:
http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/

http://www.tnnme.com/

© WVE and Ireland, MS and Me, 2011-2013. Unauthorised 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

 

Trigeminal Neuralgia Awareness Day

Tomorrow is the first Trigeminal Neuralgia Awareness Day, focused on bringing awareness about facial pain disorders.

This year I have gone through severe TN attacks myself and I therefore want to spread awareness about Trigeminal Neuralgia, also called “the suicide disease” because of the severity of pain experienced.

Please check out this video and these internet pages:

http://www.tnawarenessday.com/ :

“The presumed cause of TN is a blood vessel pressing on the trigeminal nerve as it exits the brainstem. This compression can wear away the protective coating around the nerve (the myelin sheath). TN symptoms can also occur in people with Multiple Sclerosis (MS), a disease caused by the deterioration of myelin throughout the body, or may be caused by damage to the myelin sheath by compression from a tumour. Continue reading

UNCRPD – Getting Ready to Ratify (1)

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Today I joined a conference on the UN Convention on the Rights for People with Disabilities (UNCRPD) organised by the Disability Federation of Ireland. The CRPD is an international human rights treaty adopted by the United Nations General Assembly on 13th December 2006 and it consists of a body of international experts that monitors implementation of the Convention by the States Parties. Ireland, like the Netherlands and many other countries signed the convention, but has not ratified it yet.

So why the need to have it ratified? “The Convention is necessary in order to have a clear reaffirmation that the rights of persons with disabilities are human rights and to strengthen respect for these rights.  Although existing human rights conventions offer considerable potential to promote and protect the rights of persons with disabilities, it became clear that this potential was not being tapped.”

“Indeed, persons with disabilities continued being denied their human rights and were kept on the margins of society in all parts of the world.   This continued discrimination against persons with disabilities highlighted the need to adopt a legally binding instrument which set out the legal obligations on States to promote and protect the rights of persons with disabilities” Continue reading

MS: lesson in minimalism

Can I let you in on a little secret? It’s something meaningful and I’d like to share it with you.

Before getting all philanthropic and philosophical, having multiple sclerosis is not a nice thing. Or a happy thing. Not when you’ve just been diagnosed. It’s a long road to acceptance.

In between hearing ‘You have MS’ and saying to yourself, ‘You know what, I am OK with that’, you will find yourself falling over (sometimes literally), you will feel awful because of side effects of your medication, and you will sometimes curse at your body’s lack of accomplishments.

Being diagnosed is definitely something you never thought would happen to you. Continue reading

MS: a social disconnect

“Sadly, I am learning that having MS creates a huge disconnect with people. I find myself in a non-self-imposed isolation and I think it is because our disease affects us so – mentally and physically. We have lesions on our brain, which leaves our nerves literally raw and exposed. It affects us daily in how we process not only our own thoughts, actions and emotions, but also those whom we interact with on a regular basis. It greatly affects those around us, as they do not have the knowledge, coping skills or understanding of the intricacies of MS. Nor, do some people want to wrap their brain around it. MS greatly impacts the dynamics of any relationship we have. Living with MS, woefully, is not easy for the patient or our loved ones. I recognize this new paradigm which still confounds, confuses and saddens me.” (By Sydney Renee Walker)

There are many blog posts about multiple sclerosis, and from reading and following some, it is clear that MS is not only something that weighs on its host quite physically, but the burden some MSers carry, is put there not by their illness, but by how people react to them having MS. Continue reading

Reality check!

This picture shows total lack of disregard of what other people have to go through in their lives.

I just saw this picture on a dedicated MS Facebook  page. It says “YOU WILL NEVER KNOW WHAT PAIN IS UNLESS YOU HAVE MS!!”

Well excusezmoi please, but that is just absolutely ridiculous. Life is NOT A CONTEST of who has more pain than the other, it’s not a game of showing people how sick we can be. So forgive me for sticking up for others who are ill (without MS), because statements like this only give people the wrong idea of what having MS is really like. Continue reading

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