MS News: November 2016

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Because of #DonaldTrump’s shock election in the US and his insistence on scrapping Obamacare once in office, I’ve added some sites and articles dealing with insurance etc.

Highlight!

  1. Health Insurance and Medicare
  2. Dumping Obamacare without a better plan is cruel
  3. How Trump Plan To Gut Obamacare Will Take Down Medicare
  4. ‘Trumpcare’ Proposals Could Cripple the Healthcare System
  5. Even If Donald Trump Changed The FDA Drug Approval Process, Patients Wouldn’t Benefit
  6. Repealing Obamacare Would Give A Tax Cut To Millionaires, Like Donald Trump
  7. President Trump Could Derail Obamacare By Dropping Legal Appeal
  8. Insurers use high drug costs to deter some Obamacare patients, economist says
  9. Americans are freaking out about losing Obamacare

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200 days

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200 days.

Being a perfectionist, of course, it had to be precisely 200 days.

Six months and nineteen days between my first multiple sclerosis symptoms and its very diagnosis.

Little did I know that it would eventually transform my life.

It was September 2004, and I had just dropped off my mother at Dublin Airport for her return to Belgium. On the way home, a strange sensation took hold of the left side of my face, as if it had been injected with thick rubber. Thinking nothing of it, I went back to bed to catch up on lost ZZZs.

I slept for hours.

And hours. Continue reading

Then & now

While events on the political world stage the last few months weren’t exactly vivacious or dignified, a lot has happened in and outside my own colourful, little Irish bubble also. I didn’t have a foul-mouthed Donald Trump breaking down my every word, but I equally didn’t have an eloquent Obama and Air Force One to drag me away from crime-ridden, questionable places. “Life,” in a way was, just like Einstein once said, “like riding a bicycle. To keep your balance, you must keep moving.”

Even while moving, however, at times I felt the pedals slip from under my feet, resulting in losing balance mid-air. Ungracefully, so. Continue reading

Trigeminal Neuralgia Awareness Symposium, Dublin

xzsf_vs1504October has finally arrived, which means that the 4th International Trigeminal Neuralgia Awareness Day is almost upon us. On October 7th the Light Up Teal campaign will see buildings across the world light up in a teal hue, with many buildings in Ireland joining the awareness campaign.

So far, confirmation of 34 structures has been received, including the 3 Arena, Convention Center, Mansion House, Cork City Council, National Concert Hall, Christ Church Cathedral, Shannon Airport, NUI Maynooth and Galway Cathedral. Elsewhere, Niagara Falls, the Canada Peace Bridge, Perth Concert Hall, the Trafalgar Sq Fountains, Taipei Tower and The Sichuan Tower to name just a few, will don the same colour also. Continue reading

MS News: September 2016

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Below are some MS-related topics that made the headlines this month. Do come back to check again, though, as the list will be updated every three to five days.

Highlight!

  1. #ECTRIMS2016 – Congress on Latest in MS Research and Treatment Opens Sept. 14
  2. #ECTRIMS2016 – Stay Up to Date with My Pick of Congress Highlights
  3. 25 American Athletes To Watch At The Paralympics
  4. MRI key to distinguishing multiple sclerosis from its many mimics
  5. Trending Topics in Multiple Sclerosis

Pediatric MS

  1. Pediatric multiple sclerosis: meeting the needs of the young patient and the family
  2. Pediatric multiple sclerosis: observational trials show promise for interferon-beta and glatiramer
  3. Pediatric multiple sclerosis associated with cognitive impairment in approximately a third of patients
  4. Legal Planning & Care Planning For Young Multiple Sclerosis Patients Video

Continue reading

Being real!

beingrealImagine, you’re stuck with me in an utterly crazy, hilarious episode of The Big Bang Theory. Let your imagination run riot, especially since this post has some gender reversal role playing added to it.

There is the ditzy Penny-type of person who thinks along the lines of “Not seeing = questioning = perhaps, possibly, maybe believing”. She thinks it’s hard to value the worth of something when it’s not visible, but given time to learn, she might just try and see things your way.

And then there is Leonard, who knows that he’s not on the same score card as some of his contemporaries. He knows that there is truth in the world, and more importantly, inside him. He says, “Stop questioning me. It exists, I have tangible proof, and I will demonstrate it to you until you let go.”

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Conversations with myself

14222347_1101763419917442_6482430576462991914_nNot that long ago I was caught talking to my MS medication – all 28 tablets a day – in the hope they’d finally get their act together and start doing what they’re supposed to. Work. Things. Out.

I believe the phrase was, “If you are my Ross, I will be your Rachel.”

Sure, I’ve thought crazier things than that. If people would know what I’m thinking half the time, they’d take me straight to emergency and say I tore all the ligaments in my head.

Two of the biggest life lessons MS taught me, is that you can just as well have fun, and what you think, you become. A bit of semantics here and there. A touch of rhetoric too. And a tiny bit of Ubuntu if you like. Rather like, “I’m medically fascinating.”

I’m chronically fabulous too.

(Or so I am told)

I step on my own toes and hurt my own ego for the sake of applying a bit of black humour to the conversation to stop the person in front of me worrying about my physical state. So, I’ll be damned before I start taking myself too seriously. Stepping outside the box doesn’t work because I was never in the box, to begin with, and I never will be. Continue reading

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