Brain Awareness Week

Next week is Brain Awareness Week (11th-17th March). This is a global campaign to raise awareness of brain research & all things neurological. Today, Joan Jordan speaks about her experience when first diagnosed with MS & how she’ll be joining the ‘I Love my Brain’ campaign.  

“The human brain weighs 3 pounds (or about 2% of a human's body weight). The blood vessels that are present in the brain are almost 160,000 kilometres in length. There are 100 billion neurons present in the brain. The human brain will grow three times its size in the first year of life. It continues to grow until you’re about 18 years old. It then gets smaller as we get older. This usually happens sometime after middle age.” * Imagine, all this is going on inside my head- on top of Multiple Sclerosis!

I suppose I had a bit of a falling out with my brain when I got diagnosed in 2010. Seeing those lesions on my MRI somehow made me feel that it was not pulling its 3 pounds. When I get my annual scan, I wait anxiously for the results and hope that my neurologist will say the four-letter word I want to hear- NEDA (No Evidence of Disease Activity). 

It’s a stressful time. It’s hard to explain to loved ones how out of control I feel regarding the possibility of progression. I tend to keep it all in and silently obsess between my MRI and neurologist appointments. The only people I feel I can discuss my situation with are other people living with neurological conditions who get where I am coming from. I use support groups, trusted, private, online forums and websites for this. So far, the medication I take daily has halted the progression of my MS and I am very grateful that it is funded by the HSE High Tech Scheme.   

What with now being middle aged, it’s about time I showed my brain some love. Love your Brain is an awareness campaign led by the Neurological Alliance of Ireland to coincide with National Brain Awareness Week March 11th to 17th 2019. The campaign aims to promote greater awareness and understanding of the brain and brain conditions as well as the need for more investment in services, research and prevention. Love Your Brain is supported by over twenty patient organisations and research groups which will be involved in organising events for Brain Awareness Week throughout Ireland. 

A dedicated website includes sections on each of the four elements of the awareness campaign:

  • Understanding your Brain
  • Keeping Your Brain Healthy
  • Living with a Neurological Condition
  • Promoting Brain Research

The website features links to publications, information videos, partner logos and a calendar of events taking place nationwide. One part of the campaign is called “In their own word”. Five individuals will explain why they have chosen one word to sum up what it’s like for them to live with a neurological condition. These videos will feature on social media throughout Brain Awareness Week 2019. I have thought about the word I would choose to describe what it’s like to live with Multiple Sclerosis. The runners-up are “Challenging”, “Stressful”, “Frustrating” and “Unfair”. The award goes to “Unpredictable”. I really felt that I should select a positive word but being honest, I don’t want to paint MS as something I welcome in my life. It’s just there and there is nothing I can do to prevent that fact.

Things I can do (apart from stopping obsessing!) are to watch my diet, be informed on reliable research, get regular exercise, and take care of my mental health. Things that everybody should do but sometimes are a bit harder when you live with a neurological condition, like MS. The unpredictability really challenges me. Because of past relapses, I fixate on what might happen and as a result, miss out on the joys of the present. This year, I want to find out more about what I can do in practical terms to maintain my brain health. I would really appreciate any suggestions on what works for you. 

Last of all, I want to shout out to my 3 pounds and acknowledge all the amazing things it has done for me so far. I have taken my brain for granted in the past. There are things I can do to maintain its health and stay informed about my options. Please support the events taking place nationwide as part of Brain Awareness Week. You can also follow @nai_ireland on social media and use the hashtags, #loveyourbrain2019 and #brainawarenessweek.