Motor Neurone Disease Support
Happy Birthday Stephen Hawking
The Omega MND iPad Appeal
Omega is urgently seeking personal donations, fundraising partners, and sponsorship from successful businesses to buy iPad computers to help MND patients.
Dr Teresa Griffin, Omega Chairperson - who first encouraged the Charity to begin working with families affected by MND is: “Delighted that so many people, including several un-paid caregivers attending Omega support groups, have already offered to get involved”.
The Charity aims to loan Apple iPad tablet computers, supplied with synthesized speech generating software, to at least 10 patients over the next few months. Omega has plans to expand the project later this year.
The computers are a powerful and very cost-effective communication tool. They enable patients who are no longer able to speak to communicate with their families and clinicians. It costs approximately £700 for each package consisting of an Apple iPad 2 with Proloquo2Go software, accessories and support.
The Charity, which works closely with Specialist Nurse Helen Harris, who has a growing waiting list of patients, would welcome your generous support to help us maximise the impact of this important initiative.
.png)
Progress Tracker
Omega's initial target is to supply 10 iPads to MND patients in Shropshire and Montgomeryshire. Watch the iPads stack up as we work towards our goal.
Update - following our successful Salsa Evening in aid of this appeal, we have reached our target of 10 iPads; further details to follow.
Volunteer
In addition to donations and pledges we have also received offers from a growing team of fundraising volunteers. These include Helen Harris, Heather Waters, Nicola Peck, Pearl Allis-Smith and Friends, Phil Harris, and Pam Trewin. Omega volunteers took part in events including a cosmetics party, a popular running event, and a Royal Wedding garden party; together these have paid for our second iPad and made a contribution towards iPad number five.
Contact Us if you would like to volunteer or organise a fundraising event.
Download Omega MND iPad Appeal Briefing
Radio Appeal
Omega is grateful to MND patient James Shaw for sharing his thoughts and experiences; his powerful account (see below) featured in our appeal on the BBC Radio Shropshire Breakfast Show, Saturday June 11th 2011: (click the play button)
Special thanks also to Helen Harris for taking part in this broadcast. So many people have responded to the Appeal; their generous donations will enable us to reach every MND patient in Shropshire and Montgomeryshire who would benefit within a few months.
Leena's Long Mynd Hike
Omega Supporter Leena Cowell took part in the annual 50 mile Long Mynd hike to raise funds for the Omega MND iPad Appeal on October 1st 2011. Leena (pictured, right) works as a receptionist at the Meadows Surgery in Clun, South Shropshire. She completed the Hike in 18 hours and 17 minutes. Omega thanks Leena and those who sponsored her, for their generosity in supporting this campaign.
You can watch videoclips from the hike here.
Living with MND by James Shaw
James Shaw with his wife Alison at Carew Castle, Pembrokeshire, 2010
I’m 59, & was diagnosed with MND in March 2008. Then I was working hard at my job, & swimming 4 or 5 miles a week. When I used a computer, with 2 weak fingers in 1 hand, I thought it was a minor stroke, or cold weather. My doctor said it wasn’t, & advised me to see a neurologist.
Because of the slight symptoms, at our meeting when the neurologist told me that I had MND, I kept smiling, & thinking “I must be dreaming - wake up & go swimming, & then to work.” I was obviously in a state of shock. After a couple of days I faced up to reality & began planning to make the most of life.
With hindsight I’d probably had MND for at least 2 years before diagnosis, but I hadn’t thought the symptoms meant I was ill, e.g. needing help to fasten collar button on new shirt, slowing down at swimming a mile, & falling over on a few country walks. I thought I was just getting older.
Now I can’t walk, stand, lift my arms, eat, or speak. I’m totally dependent on others, but I still enjoy life. I have wonderful care & support from my wife Alison, family, friends, MNDA, & professionals; & it’s great to have MND patients & their families as friends, to share feelings & experience.
I also focus on 3 ideas:
- enjoy today, & don’t worry about tomorrow;
- don’t feel sorry for yourself, but for other people all over the world with problems such as: bad health, poverty, climate change, war, etc
- try to keep the sense of humour going (I learnt that at work!)
In 2010 we did lots of walks with an electric wheelchair, & went to theatres & cinemas. I went up Mount Snowdon on it, with Alison; in the train! My arms are too weak to drive it now, so I haven’t been outside for months.
I spend nearly all my time on the bed with my laptop, with which I keep in touch with family & friends, read books & newspapers, & play scrabble & other games. I can’t use a normal keyboard, but I control the cursor on the screen with head movements to use Grid 2 (onscreen keyboard and speaking machine), & I can just click on a mouse under my fingers.
I use a non-invasive ventilator to help me breathe. At first I only used it at night, with a facial mask, & slept much better. Now I use it all day, with a nasal mask when I’m awake, and feel brighter.
I also use a nebuliser; a Cough Assist Machine which pumps phlegm up to my mouth; & a Suction Machine which hoovers it out of my mouth. This is several times a day & helps me breathe. I drink red grape juice immediately before using the Cough Assist Machine, to loosen phlegm & bring it up more.
As eating became more difficult, I lost 2 & a half stone. Since I gave up eating altogether, I’ve put a lot of healthy weight back on! I had a PEG put in my stomach last year. I have nothing but Fortisips (high calorie drinks) & water through it 3 times a day, & eat nothing else. I measure my daily calories & follow my dietician’s advice.
MND takes us to the same final destination, but by different routes & speeds. We all seem to have different (but similar) symptoms at different times. Last year, I met a patient who could use his arms & legs better than me, but (unlike me then!) couldn’t talk.
Advice from MNDA, carers, doctors, nurses & therapists, has been crucial, especially: “Get help too early, rather than too late.” E.g. adapt home; ask for wheelchairs, & a hoist; & stop walking before I fall over & break a hip or damage my brain. If we don’t ask for it until the moment we need it, we’ll face disasters while we wait for it.
I’m so grateful for the love & support of Alison, & our 3 children (Fiona, Rosie, & William, who ran the Great North Run for MNDA in 2009), & their courage in facing up to the situation.
James Shaw
12/05/2011
James Shaw died on 30th July 2011.
We remain grateful to James and Alison, Will, Rosie and Fiona for their valuable contribution towards our work. Together, they helped members of the Omega Team gain a better understanding of the devastating impact of motor neurone disease; but more importantly they demonstrated how a strong, loving and very capable family can support each other at such a difficult time and yet still manage to reach out to help others.
Appeal Update - BBC Radio Shropshire, 6th August 2011
Click the play button below to listen to an update on the Omega MND iPad Appeal; the audio clip features more information on the life of James Shaw.
Provide Feedback
There is a range of communication devices and software packages in use. To help us give MND patients the very best support available, Omega is interested in receiving feedback from MND patients and their families who are already succesfully using Proloquo2Go software or similar communication software or assistive equipment.
Omega is also producing a beginners guide to using the iPad - get in touch if you would be interested in testing and reviewing the guide.
MND Links
Motor Neurone Disease Association (MNDA)
Email MND Connect, Telephone 08457 626 262
BBC Click Video - featuring assistive technology information
Simon Greenaway
Simon (pictured, right) is an MND patient actively researching assistive communication technologies. His website, Simon Face covers his equipment tests. You can also keep track of developments in this research via Simon's Twitter page.
Steve Jobs 1955 - 2011
Former chief executive and co-founder of Apple, creator of iPad, has died aged 56 after suffering from pancreatic cancer.
A statement released by Apple said: ''Steve's brilliance, passion and energy were the source of countless innovations that enrich and improve all of our lives. The world is immeasurably better because of Steve."
Click here to watch a BBC video clip reviewing Jobs' life and achievements.
Happy Birthday Stephen Hawking
Renowned physicist - and long-term MND sufferer - Professor Stephen Hawking will be 70 in January 2012.
To mark the occasion Cambridge University is hosting a scientific conference, The State of the Universe, at which Professor Hawking will give the keynote address on fundamental physics at the extremes: black holes and the Big Bang.
Professor Hawking has also agreed to give an interview to BBC Radio 4's Today programme, in which he will field questions submitted via email and Twitter. Click here for more information.
