Patricia Sweeney with her daughter Clara, husband Eugene, son James and his girlfriend Eva on a family trip of a lifetime to Taiwan and Japan.
A mother of two who gave up her dream Waterford job says Motor Neurone Disease (MND) has changed her life “enormously”.
Patricia Sweeney was nine years working with the Visiting Teacher Service for the Blind and Visually Impaired in Waterford before “reluctantly” taking early retirement two years ago after being diagnosed with MND.
59-year-old Patricia, who lives with her husband Eugene in Clonmel, can no longer go for walks with her friends or sing with her local choir because of the progressive neurological condition which attacks the nerves in the brain and spinal cord.
“I am no longer independent and rely on Eugene for assistance and need help from family and friends when I am out. I can’t walk independently and rely on a rollator or crutches to walk short distances and a wheelchair for anything longer,” Patricia tells Waterford Live.
“My voice has become unrecognisable from the voice I once had and I have to work hard to make myself understood. Singing is impossible. My hands are now beginning to suffer stiffness and are weaker for certain tasks. Thankfully, I presently have only very mild swallowing difficulties and my breathing is only compromised a little to date. My deterioration is much slower than many others with MND, so I am very lucky,” continues Patricia, who is encouraging the public to become familiar with the devastating condition.
Patricia’s “positive outlook on life” is helping her cope with MND. “Along with this I have the most amazing husband, family and good friends who I know will journey with me in good times and bad, so I am really blessed. They have all rallied round to make life easier, more enjoyable and to make sure I get out as much as possible and that my diary is generally full.
“Thanks to the brilliant organisational skills of my son and his girlfriend, we managed to take the family trip of a lifetime to Taiwan and Japan last October – something I thought would never happen when I was diagnosed in 2016.
“Everything in life now has to be carefully planned, taking my needs into account in terms of transport, accommodation, facilities and accessibility. My husband, son and daughter happily take on these tasks – remember I can’t even ring around to check these things myself because of my speech difficulties. I require assistance for everyday tasks we all take for granted and my husband gave up work to be there for me and also to take on all the household tasks that we previously shared. He also has the wonderful gift of making me laugh, even when things get tough. I am so lucky,” the mother of James and Clara smiles.
Patricia says support from the Irish Motor Neurone Disease Association (IMNDA) has been invaluable. “MND is a lonely diagnosis as it is not all that common and more than likely your GP will not have met another patient with it. Once I made contact with the IMNDA I was no longer alone. They sent out a very comprehensive information pack and arranged a home visit from the motor neurone nurse who was able to answer my questions and advise me on supports I might need. She also arranged for a monitored panic alarm, which I wear all the time at home in case of a fall or any other difficulty. Should you want it the association will also arrange some counselling sessions for you and one member of your family.
“As the disease progresses you have the security of knowing they will provide you with a loan of any specialised equipment you may need and some additional home care. They organise a conference every year where you can listen to very informative talks and get an update on research that is going on. Most importantly, the conference gives you a chance to meet other people with MND. They work tirelessly to support the needs of people with MND, their families and carers and yet they rely on fundraising for 82% of their income as they only receive 18% of their finances from public funding,” Patricia explains.
Patricia attends Beaumont Hospital in Dublin every few months to meet with a neurologist and takes part in MND research. She also undergoes physiotherapy, occupational therapy, and speech and language therapy locally. She is living “from day to day” and doesn’t think too much about the future. “Although no cure has been found to date for the disease they can alleviate the symptoms and make you more comfortable through medication and equipment. I will be assessed soon in the Central Remedial Clinic and I may need to aid my communication in the future as my speech deteriorates,” she adds.