MS

Making sense of MS

attitudeNo matter when you were diagnosed with multiple sclerosis, or any other chronic illness, there are times you’re confronted with your own self just that little bit too much. And what you see, is not what you signed up for.

Leaving the standard, first impulse “Why me?” question and the “It’s not fair, either!” shouting aside, you suddenly can’t recall answers on things you were so sure of before MS entered your life.

“Will I be able to go on holidays in a few months?”

“How will I find my way to yet another bland treatment room in yet another hospital department?”

“Will I be able to keep my job, my relationship afloat or stay in control of my life?”

If or when your symptoms subside, you feel relief, hope. When MS turns around and suddenly thumps you on the nose with a new symptom, emotional pain might be twice as hard. You went through it once before already, remember, so why having to go through it again? ‘Unfair’ is a word that will show its blooded nose every so often. Continue reading

Positive MS News: July 2014

A lot of news on the research front in July, which can only be good. It’s a joy, relief as well as hope that one of those research projects or trials might lead to longer periods of remission, and perhaps a return to lesser disability for those with primary and secondary forms of multiple sclerosis. So let’s keep fingers, toes, eye lashes and anything else crossed that can be crossed. A lot of people with severe MS deserve at least that. Remember, 2.3 million people with MS globally is staggering. It doesn’t have to be that way, though.

CFT0728_01435936667Research results

  1. Human Stem Cells Effectively Treat Multiple Sclerosis in Mice Models
    HCPLive – Embryonic stem cells are a potentially viable treatment option for multiple sclerosis (MS), according to research published online in Stem Cell Reports.
  2. Innovative research tool pinpoints potential therapies for multiple sclerosis
    Medical Xpress – Demyelination by MS. The CD68 colored tissue shows several macrophages in the area of the lesion. Original scale 1:100.
  3. Melanocortin Receptor Agonist can Treat Multiple Sclerosis
    HCPLive – FRIDAY, July 11, 2014 (HealthDay News) — Melanocortin receptor type 3 (MC3) has protective properties for joint and periodontal tissues.
  4. Researchers discover neuroprotective role of immune cell
    Medical Xpress – A type of immune cell widely believed to exacerbate chronic adult brain diseases, such as Alzheimer’s disease and multiple sclerosis (MS).
  5. UCSF scientists identify drugs that could help MS patients
    SFGate – In patients with multiple sclerosis, the immune system attacks myelin, the insulation that surrounds the wire-like connections between nerve cells.
  6. Scientists 1 step closer to cell therapy for multiple sclerosis patients
    Medical Xpress – In multiple sclerosis, the protective covering of axons, called myelin, becomes damaged and lost.

Continue reading

Wonder Woman Syndrome

pace-yourself2I’ve done it again. Minus the suit, mind you.

Rhetoric aside, picking my battles wisely is not something I do easily. Not only that, changing your lifestyle and striving for quality of life is not as easy as it sounds. It’s as much a mental, emotional and physical struggle to sustain quality of life. Continue reading

Kids? Not right now, please…

Children and multiple sclerosis? Although life was good in my last relationship, I secretly decided that having children would probably not be on my list of things to do. Not because of the lack of love, but because I didn’t want to pass on my illness to my future son or daughter. When we eventually talked about possibly mixing my illness with his screaming babies and hectic lifestyle, I realised that in quiet, I made the right decision.

Being broody comes with being female, and despite my decision, I still get broody sometimes. If it wasn’t for MS, I absolutely would’ve wanted children. One of the few nice things about being chronically ill and being childless is however, when looking after children of friends and family, you can give their children back at night. I get to go back to my own cool, dark bedroom in my quiet house, and I have my broodiness resolved for a while. Continue reading

The social swing of life

social-mediaLife isn’t viewed through our own two eyes anymore. We now let a smartphone be the first witness of things happening around us. We learn about other people’s lives, not by talking to, or observing them from a sun-drenched patio with a cool drink in front of us. Instead, we check out our friends’ Facebook pages and read their blogs. Direct communication seems a thing of the past. Continue reading

National Annual Awards 2014

It’s the season of nominations, so why add your vote in MS Ireland’s MS Person of the Year, MS Carer/Helper of the Year or MS Volunteer of the Year for the National Annual Awards 2014?

As you already know, I applaud Multiple Sclerosis Ireland for the hard work they put into helping those with MS, and fight for those who care for them. The society has received many mentions in my blog here, and for good reason. From the day of my diagnosis, now 9 year ago, I have had the best people listening to my initial denial to now being supported in raising my voice for other people with MS today.

Many people have had the chance of being part of a very vibrant volunteer network, or have been helped by them. For those volunteers, carers, helpers or a person with MS, the National Annual Awards have been created: “Our annual National Awards recognise those who through their dedication and selflessness play a significant role in the lives of others and the progress of the Society.”

So, if you’re a member of a Branch, an individual member or staff, and you know a member who you feel deserve recognition, please nominate your special person in one of the three categories:

The closing date for nominations is Friday, August 1st 2014.

For more details about the awards, contact Alice McKeon on alicem@ms-society.ie or on (01) 6781608 or drop in to your local Regional Office to pick up a form.

The 2014 awards will be presented at the Annual General Meeting in September.

© WVE and Ireland, MS and Me, 2011-2014. 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.

Positive MS News: June 2014

clinical

Research results

  1. Fatigue in Multiple Sclerosis Linked to Regional Brain Damage
    Multiple Sclerosis News Today – Fatigue, a common symptom of multiple sclerosis, could be a result of regional damage in the brain.
  2. Multiple sclerosis Reactivation of Epstein–Barr or herpes viruses not associated with MS relapse
    Nature.com – Infection with the Epstein–Barr virus or human herpesvirus 6 is associated with the initial onset of multiple sclerosis (MS)
  3. SLU researchers see possible answer to chemo pain in a multiple sclerosis drug
    Science Codex – A medication called FTY720 (Gilenya) is FDA-approved as a therapy for multiple sclerosis.
  4. Researchers publish one of the longest longitudinal studies of cognition in multiple sclerosis
    Medical Xpress – The article, “Cognitive impairment in multiple sclerosis: An 18-year follow-up study,” was epublished by Multiple Sclerosis and Related Disorders.
  5. Roche Turns to MS Research on Agreement with Versant Ventures
    Multiple Sclerosis News Today - will be dedicated mostly to the development of therapies for multiple sclerosis. Inception 5′s research will focus on multiple molecular targets.
  6. Embryonic Stem Cells Will Offer Treatment For Multiple Sclerosis: Study
    Counsel & Heal – Researchers have identified a novel approach to treating multiple sclerosis using human embryonic stem cells.
  7. Parasitic worm in pigs could help relieve symptoms of arthritis, multiple sclerosis, diabetes and
    Herald Sun - but it does not harm humans, and there is even evidence it can lessen symptoms in people with multiple sclerosis and inflammatory bowel disease.
  8. Researchers Report Alternate Explanation Discovery Of How And Why CCSVI Treatment Works In
    Multiple Sclerosis News Today - effects of “chronic cerebro-spinal venous insufficiency” (CCSVI or CCVI) treatment for Multiple Sclerosis (MS) and certain other disease conditions.
  9. Pregnancy Hormone Drastically Cuts Relapse Rates in Women with MS
    Healthline – Women with multiple sclerosis (MS) have long claimed that their disease seems to go into remission when they’re pregnant, and that they feel better.
  10. Human embryonic stem cells perform well in multiple sclerosis mouse study
    BioNews – ‘The cells not only reduced the clinical symptoms of multiple sclerosis but prevented demyelination, which disrupts the ability of the nervous system.

Continue reading

Game, set, relapse!

“Dwell on the beauty of life.
Watch the stars, and see
yourself running with them.”
(Marcus Aurelius, Meditations)

There’s no hiding when a MS relapse is in town. It arrived on my doorstep about 5 days ago, warts and all, and I’m still trying to hide. I could give you the nitty gritty technical bit of it, but I fear it wouldn’t read like a Booker prize novel. And that, is something I aspire to one day, just not today. Continue reading

Not my face!

162974080234952360_x4ok1y8s_fSomeone once said “Babe, you may have MS, but you’re still sexy. Never forget that.”

Shortly after my diagnosis, my then-boyfriend uttered those very words. He must have seen me look at myself in a critical manner one too many times since returning home from a two-week stint in hospital, wondering if ‘MS’ really was written on my face.

Even though I don’t usually give in to superficial words like this, and don’t necessarily follow fashion to a T, hearing his words did wonders for my mind. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself. Nine years ago, his words became a quick-fix mantra to pick myself up when I needed a boost. Continue reading

Positive MS News: May 2014

funds-from-nih-promote-large-cost-effective-clinical-studies-33717.html

With a 14-day delay in posting some positive news about MS, I’d like to offer my apologies and no, I absolutely haven’t forgotten about you. As many people with MS know, May is about the busiest month for those who advocate and volunteer. World MS Day is the main day of the year for MSers, but before and after… sigh… there’s a lot to be said, done and needless to say… lots of sleep to be had. So without further ado, here is some news that might make your lips curl and your mind coo! Continue reading

FEATURED: Irish public transport: access all areas?

The-new-footbridge-was-built-in-2004Ah, public transport in Ireland… Two-track train stations without elevators or escalators. Buses with seats for elderly or disabled people. Crutches or walking sticks you want to throw from the train or bus right into the Irish Sea.

We’ve all been there, needing escalators instead of high, rusty, wobbly, wet and windy staircases over train tracks. Sure, public transport in Ireland is slowly moving into the 21st century, with new footbridges being built with elevators inside them, but still… not fast enough because people with physical disabilities need more. Continue reading

Medical Website Links

linksCentre for Mindfulness Research and Practice UK

eMedicine Health, experts for everyday emergencies

Everyday Health

Johns Hopkins Medicine

Mayo Clinic

Mindfulness – Your Present Moment

WebMD

Weight Watchers

© WVE and Ireland, MS and Me, 2011-2014. 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.

Disability Links

 

linksfffConvention on the Rights of Persons with Disabilities (SCRPD)

Disability and the United Nations

European Network on Independent Living (ENIL)

Universal Declaration of Human Rights

© WVE and Ireland, MS and Me, 2011-2014. 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.

Neurology Links

enlacesJournal of Neurology & Neurosurgery

Journalwatch Neurology

Netmed Neurology

Neuronetwork Ireland

Neuroscience Ireland

© WVE and Ireland, MS and Me, 2011-2014. 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.

MS Organisations

imagesOn European level

European Committee for Treatment and Research in Multiple Sclerosis

European Multiple Sclerosis Platform

MS Trust

Multiple Sclerosis International Federation

MS Societies around the World

MS Society Ireland Continue reading

Giving up is not an option

“We are all different – but we share the same human spirit.
Perhaps it’s human nature that we adapt – and survive.”
(Stephen Hawking)

Just realised a startling… well… realisation. In three years of online writing, I’ve never as much wrote one blog post about the possibility of ending up in a wheelchair. Is it denial? Simply focusing on being positive? I don’t know what the heck it is, either way, writing about it is way, way overdue.

Of course, when you hear ‘multiple sclerosis,’ you straightaway think of being confined to a wheelchair for the rest of your life.

Others think of you ending up in a wheelchair for the rest of your life.

Suddenly you see wheelchairs everywhere. Continue reading

EMSP Spring Conference 2014, Dublin

emspThis year is the European Year of the Brain, and 2014 also marks the 25th birthday of the EMSP, the European MS Platform.

Unequivocally and visibly astonished, that’s what I am right this minute. The quality of yet another MS organisation and the hard work they do, makes me want to jump up and down. Digging deeper into the work of the EMSP because of their upcoming two-day conference in Dublin, I can only say one thing: ‘People with MS are in very, very good hands, with people with- or without MS standing up for them wherever they are.’

Continue reading

Strength = choice

An invisible illness isn’t a choice.
My visible hope is.

strength

© WVE and Ireland, MS and Me, 2011-2014. 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.

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