Motor Neurone Disease Family Support Programme

 Omega MND iPad Appeal

Omega is seeking personal donations, fundraising partners and sponsorship from successful business to buy iPad computers and speech synthesizing software to help MND patients.  Dr Teresa Griffin, who first encouraged the Charity to work with family affected by MND, is "delighted that so many people, including several unpaid 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.

The Effects of Motor Neurone Disease (MND)

The condition:

  • 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.

Omega care for life has built a team which has provided support, not always available through 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.
  • Providing 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.
  • Sharing essential information with families and health professionals.

Development Co-ordinator, Gavin Martin, has overseen Omega’s Motor Neurone Disease Family Support Programme since 2011, receiving client referrals from local clinicians, preparing new and returned equipment for next client use, and handling project administration.


Volunteer for MND


In addition to making donations and practical help, a growing number of Omega supporters have organised and got involved in fundraising events in aid of the Omega MND iPad Appeal. These have included a cosmetics party, a running event, a Royal Wedding garden party, Salsa night and many more.  If you would like to consider organising your own event, download the Omega MND iPad Appeal Briefing and get in touch to talk about how we can support your project.

Leena CowellLeena 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 completed the hike, which took place on October 1st 2011, in 18 hours and 17 minutes. View video clips of the hike on YouTube. Leena has since been involved in other fundraising activity.

 

 

Phil and Lara Jones, family, friends, supporters and customers of the Stiperstones Inn have regularly raised money to sustain the work we do, not least from the successful annual Dash or Dawdle.

 

 

In April 2018, clinical lead Speech and Language Therapist Amanda Sharp ran the London Marathon on our behalf and raised over £1,000.

 

 

 

James Shaw: Living with MND

James Shaw: Living with MNDOur friend and supporter James Shaw (pictured below with his wife Alison) lived with MND for more than 3 years; he died on 30th July 2011. We are grateful to James and 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, and was diagnosed with MND in March 2008. Then I was working hard at my job, and 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 and 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, and thinking 'I must be dreaming - wake up and go swimming, and then to work'. I was obviously in a state of shock. After a couple of days I faced up to reality and 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, and 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 and support from my wife Alison, family, friends, MNDA, and professionals; and it’s great to have MND patients and their families as friends, to share feelings and experience.

I also focus on 3 ideas: enjoy today, and 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, and went to theatres and 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 and friends, read books and newspapers, and play scrabble and 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), and 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, and 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; and a Suction Machine which hoovers it out of my mouth. This is several times a day and helps me breathe. I drink red grape juice immediately before using the Cough Assist Machine, to loosen phlegm and bring it up more.

As eating became more difficult, I lost 2 and 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) and water through it 3 times a day, and eat nothing else. I measure my daily calories and follow my dietician’s advice.

MND takes us to the same final destination, but by different routes and speeds. We all seem to have different (but similar) symptoms at different times. Last year, I met a patient who could use his arms and legs better than me, but (unlike me then!) couldn’t talk.

Advice from MNDA, carers, doctors, nurses and therapists, has been crucial, especially: 'Get help too early, rather than too late' e.g. adapt home; ask for wheelchairs, and a hoist; and stop walking before I fall over and 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 and support of Alison, and our 3 children (Fiona, Rosie, and William, who ran the Great North Run for MNDA in 2009), and their courage in facing up to the situation."

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 successfully 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 bought from Omega for £5, but is free to MND patients and other Omega clients. Contact Us to order a copy.

Links

Motor Neurone Disease Association (MNDA)

Proloquo2Go on Facebook

Simon Face
Simon Greenaway is an MND patient actively researching assistive communication technologies. His website, Simon Face, covers his equipment tests. He also has a Twitter page.

Studying in UK as a Disabled Student
In UK, there’s no reason for disabled students not to pursue higher education. Despite still being very challenging to study as a disabled person, significant improvements are done and nowadays university is equally accessible to everyone.

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
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

Forum Post: Text to Speech, on the iPad (Free app)

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.

Neil Platt: life with MND

MND Scotland - Time to benefit people with MND MND Scotland - Time to benefit people with MND