Motor Neurone Disease
Effects of Motor Neurone Disease (MND)
• Leads to a complete inability to perform tasks involving muscle activity such as walking, swallowing, breathing or speaking;
• Is usually well advanced by the time diagnosis is made;
• Generally progresses rapidly;
• Is rare and invariably fatal.
Over the last three years, Omega care for life has built a team which has provided support, not directly available through other statutory and non-statutory agencies, to improve the lives of families affected by MND in North Shropshire and North Montgomeryshire. We achieve this with a range of measures including:
• Identifying and quickly assessing unmet need;
• Rapid release of equipment and speech synthesising software;
• Flexible help for families to move on at their own pace following bereavement, reducing the need for health service support for those left behind,
• Building trust and collaborating with health professionals and voluntary sector organisations, including hospices, thus meeting the clinical and care needs of our target group;
• Sharing essential information with families and health professionals.
In addition to donations and pledges, a growing number of Omega supporters have organised fundraising events themselves, in aid of the Appeal, including a cosmetics party, a popular running event, a Royal Wedding garden party, Salsa night and many more.
Leena Cowell (pictured right), receptionist at the Meadows Surgery in Clun, took part in the annual 50 mile Long Mynd hike in aid of the Appeal. She complete the hike, which took place on October 1st 2011, in 18 hours and 17 minutes. View videoclips of the hike on Youtube
If you would like to consider running your own event, Download the Omega MND iPad Appeal Briefing, and get in touch to talk about how we can support your project.
James Shaw: Living with MND
Our friend and supporter James Shaw (pictured right with his wife Alison) lived with MND for more than 3 years; he died on 30th July 2011. We are grateful to James & Alison (as well as Will, Rosie and Fiona) for their valuable contribution to our work, helping the Omega Team gain a better understanding of Motor Neurone Disease.
Together, 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. James, a strong advocate of assistive technology, wrote the following piece shortly before he died.
"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; and 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.
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; Contact Us
Omega iPad User Guide
Omega has produced a beginners guide to using the Apple iPad tablet computer. The guide can be purchased from Omega for £5, but is free to MND patients and other Omega beneficiaries; Contact Us to order a copy.
Therapy Box Business specialising in communication and therapy apps for people of all ages and abilities. The apps are compatible with iDevices including iPod touch, iPad and iPhones. The business also provides iPad Bundles, communication accessories and training for UK customers.
Communication Matters is a UK-wide organisation committed to supporting people of all ages who find communication difficult because they have little or no clear speech.
BATA - British Assistive Technology Association Raising the awareness of assisted technology
FAST - Foundation For Assistive Technology works with the AT community to support innovation in product development and good practice in service provision
Letter to MND Association, in praise of iPad "Speak it" App
Simon Face for People With MND - The aim of simonface is to help people with Motor Neurone Disease quickly find the right assistive technology they need to empower them to communicate when they are losing, or have lost, the use of their voice and hands.
Omega is seeking personal donations, fundraising partners, and sponsorship from successful businesses to buy iPad computers and speech synthesizing software to help MND patients. Dr Teresa Griffin, 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”.
Initially, Omega aimed to raise enough money to supply 10 iPad bundles to MND sufferers in Shropshire and Montgomeryshire. We reached this target in early 2012 and are now working on plans to expand the project.
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 retired 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.
How to Donate