Something You Might Like to Know

Hi
I want to update all of you followers of Emma’s blog. Physically she has left us but she lives on in our hearts and minds in many different ways. This blog lives on, for example, as a testament to her spirit. Recently I was informed of something regarding Emma’s writing that, I think, might be very relevant to all of you who have accessed shapeshiftingemma and have scrolled down through these pages. It turns out that the features editor of the Evening Echo (a very popular local paper for those who don’t know it) was intending to ask her to write a regular column. To me this is a great accolade to her work. She began her blog in torturous conditions piecing together the letters of every word with the movement of her eyes. All she had was a hunger to write. Little by little her writing gained recognition. This developed to the point where she had many thousands of followers, where newspapers featured her work in their pages and where a 5 part radio program was produced based on the words of her blog. Thus to arrive at a place where an editor wanted her to write a regular column in his newspaper was an incredible achievement. Were she to have known this she could have been so proud of what she had done. For this reason I am letting you, the readers, know about it. You have valued her writing and appreciated her words and would know what this recognition would mean to her. Let’s all savour its significance in Emma’s (ongoing!) tale.

Kind regards to you…

Jonnie

By the way here is a link to the radio program that was made by Jo Pickup:
https://3c-lxa.mail.com/mail/client/dereferrer?redirectUrl=http%3A%2F%2Fwww.ucc.ie%2Fen%2F983fm%2Fdocumentaries%2Fshapeshiftingemma

And here is a link to an article in the Evening Echo promoting that program:
http://www.eveningecho.ie/cork-news/brave-emmas-words-live-on-through-inspirational-documentary/

A Brief Reminder

http://replayapp.com/v/qajwbLzgnD/

Very Sad News

I am so sorry to have to let you all know that lovely, amazing, beautiful Emma lost her battle with MND last Friday morning, the 27th of February. We are all grieving her loss here and can’t believe that she has left us.
Her funeral arrangements are on RIP.ie
Sincere thanks to all who have followed her blog. I know that it has been an inspiration to so many.
Kind regards
Jonnie

Interesting and hopeful discussion on MND from recent rte radio program

https://player.fm/series/rt-today-with-sean-orourke/medical-research

Press release

IMNDA came up with great idea of doing a sponsored silence in the month of February. Anyone who is interested can do it.

Imagine not being able to say ‘I Love You’ this Valentine’s Day
Emma Can’t

February is the month of love where couples from across the world openly celebrate their affection for each other. But imagine not being able to say ‘I Love You’ this Valentine’s Day. Most people with Motor Neurone Disease (MND) can’t. Between 80-95% of people living with MND will experience some loss of speech before they die.
Emma Fitzpatrick is 47 years old from Kinsale, Co Cork. She was diagnosed with MND in 2010. Since her diagnosis, Emma can no longer walk and is confined to a wheelchair. She can no longer speak and communicates mainly with theuse of Eyegaze technology.
“This most cruel disease has taken with it the use of my upper and lower limbs. It has also taken my voice,” Emma Fitzpatrick. Emma met her husband Jonnie on the eve of Valentine’s Day 16 years ago. This year she will not be able to say the words ‘I love you’ to him or her two children, Kitty and Rowan.
This February we’re asking you to take on a sponsored silence to experience what it would be like to not be able to speak. Stay silent for 30 minutes at work, school or even at home alone. During this time of reflection think ‘if today were the last day you could use your voice, what would you say?’Share your last words with us on Facebook and twitter (@IMNDA) by using #Voice4MND.
All you have to do is pick a day, time and location where you will take on your sponsored silence. Sponsor cards are available from our office, just email fundraising@imnda.ie or you can text MND to 50300 to donate €2 (100% of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278), then tell us what would be the last thing you would say if you knew you would lose your voice #Voice4MND.
Nominate friends and families to join you. Sometimes silence can speak volumes. Take on our challenge today. Don’t let Emma suffer in silence; don’t let her live without a voice.
The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND Nurse. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 86% of its income.
ENDS
For more information please contact Derbhla Wynne or Maeve Leahy
(01) 873 0422 email pr@imnda.ie
Notes to Editor:
Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently over 320 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.

A happy new year!

The days of January are passing by so quickly. I must admit I’m pleased the constant demands of Christmas are over replaced by fresh energy of this new year.
Lovely to get invites to friends, we spent the evening of 23rd being seranaded by musicians under twinkling lights.
Gorgeous!
Once I got over the fact that I couldn’t indulge in sparkling wine and crispy treats I was fine.
I was contacted recently by somebody Natasja [one of my carers] knows through her daughter ‘s school. This woman called Jo wants to make a radio program on my blog. An actress with a similar accent will read out extracts from it and interspersed with interviews of family and friends. I’m really excited about being part of this production. The kids are too and are due to be interviewed by Jo over the coming days.
I feel strong and positive for this new year.

Song I love

Sparkle’s back!

Went to hear Declan O’Rourke sing on Friday night two weeks ago in the Spaniard pub/venue again. My soul needed soothing as I’ve been feeling devastatingly low recently and his music put my sparkle back. I’m aware that I live in constant discomfort of some kind, be It physical or spiritual. Ease comes only when I’m sleeping. The news about Thich Nhat Hahn upset me. He’s in hospital with a brain haemorrhage. It’s so unfortunate for him and his community but perhaps they have another wiser take on it.
Declan sang his heart out for us with an acoustic guitar. One woman standing behind me decided to sing along too. Annoying and drunk she ruined some of my favourite songs including Galileo and Time Machine screeching out her version! Sadly for me, I wasn’t able to turn around and throw her a filthy look, it’s physically impossible. Poor Lucy admitted defeat saying, “there’s no way I’m taking her on! “. She’s right too and I wasn’t in the position to attempt to start spelling out, “throw her a dirty look for me! “.
Uplifted and revived by the musical experience overall we made our way home under a star filled sky echoing the pleasure I felt inside. Jonnie and I stayed up till two in the morning chatting about how we could adapt or change the relentless routine I live under. The very non – spontaneous regime that’s crushing my spirit. It felt so good to be talking about it. The following morning we went for a walk around our neighbourhood after my shower instead of going back to lie on my bed. Simple changes to make huge differences! I haven’t looked back since and my sparkle ‘s still here a week later! I remember being in a similar situation some years back living and working in Cork. Life appeared so dull and uninteresting. Reading something from one of John O’Donohue’s books really helped me. It was something about finding ways of seeing usual things differently. I remember walking a different way to work afterwards and cooking different foods.
I’m so pleased to feel well again. I love December! We went out again Friday night even after a shopping trip to Wilton. My precious energy is flowing thankfully.
Unable to eat hard foods I’m eating a lot of soup. Lucy kindly cooked a recipe she found involving minced lamb and fresh plump vine tomatoes. Absolutely delicious.
Martha has been busy with the kids making Christmas decorations. I love our front door!

Freak- heart

I was taken by ambulance Tuesday afternoon to Cork University Hospital with a heart racing at one hundred and seventy. That was before I was wheeled onto it. It has stayed normal between seventy and one hundred since then.
I’d been awake since half seven Tuesday morning with a heart thumping so fast I thought it would jump straight out of my chest. My doctor strongly recommended hospital and I shuddered at the thought.
Luckily Lucy and Tomas are back from France for a few months and are more than happy to stay with the kids. Jonnie stayed the two nights with me as I was released Thursday! They don’t know why my heart was racing and after countless scans and twenty four hour observation, they let me go as all is normal again thankfully.
Some nurses and doctors in the hospital don’t seem to know how to speak to me. They have a few different approaches;
1. They address Justine one of my carers instead of me.
2. They address me as if I’m retarded. [excuse non pc word, it’s anger talking]
3. They shout at me as if my ears have been affected too by my illness.
4. They address me with overwhelming pity saying “creatur”ie. you poor unfortunate darling. And they often do this silly looking wave goodbye like you might do to a child.
What I want is to be treated like a normal human being. I believe its my right. It’s such a horrendous illness and it’s hard enough to bear without being treated like some kind of freak.