CM – Motor neuron disease: « A year ago I did 140 kg bench press – now I can no longer lift my grandchildren »

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Father of three Ger Tracey received the devastating diagnosis of MND at the end of last year. He shares his story to help others who have been newly diagnosed and in hopes of raising money to help fight the disease

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Arlene Harris

The past year has taken its toll on all of us, but imagine if you had to deal with losing a parent and then being diagnosed with a life-limiting condition in addition to being locked out. This is exactly what happened to Ger Tracey, who was diagnosed with motor neuron disease (MND) in October 2020 after a routine visit to his family doctor.

Ger, who has three grown children and « seven and a half grandchildren » – like one on the way is – hopes his story will help people realize how suddenly life can be changed by a disease like MND.

He speaks out to encourage us all to do our part in supporting the Irish Motor Neurone Disease Association (IMNDA), which is hosting its annual fundraiser today June 21st. Ger, who lives in Offaly, has always been fit and healthy, and he says his diagnosis came « out of the blue ». He asks people to be aware of the symptoms.

« Last summer I noticed that my breathing was a little difficult on the daily walk, » he says. “I don’t smoke and have spent a lot of time in the gym so it was a bit of a surprise for me. « But my family has a history of heart problems, so I thought it might be related.

 » Then I noticed a problem with my hands that made the pinching motion a little weird – I was having trouble with the Put the key in the door and close my jacket. But here too there is a history of arthritis in my family, so I put it down to it and didn’t do much about both problems.

« My mom was sick at the time and then she died, so there was a lot going on and I went first to the doctor in October when I had my annual check-up. I didn’t even really think much about the two issues, and I only mentioned it casually to the GP, so she decided to investigate and said she’d like to send me to Tullamore for some tests.

« I wasn’t worried at all but when I left she said ‘Go home now and don’t worry’ – and that was the first time I ever suspected something was wrong. ”The following week Ger received a call the hospital to schedule an appointment, and within a few days he received the shocking diagnosis. « I was there for a day of testing on Wednesday and should come back the next day for an emergency MRI, » he says. « The doctor booked me in for another test Friday morning and told me that he would wait for me after that and that I should bring my fiancé Laura with me.

 » As soon as he said I knew something was wrong. I asked a young doctor what he thought was wrong with me and he said the doctor was worried about my « motors » as well as the neurons, but he would talk to me about it on Friday. When I heard that I did, of course, what I shouldn’t have done – and immediately Googled it.

« When Laura and I walked in on Friday, the doctor was initially talking about the bush and we just asked, if it was MND and he said ‘yes’. I asked if it was incurable and he said again that it was him.  » I’m very sorry, but that was it. We were both devastated. I’ve always been fit and healthy and even though I thought something could have gone seriously wrong, I never thought it would get that bad. « 

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Once diagnosed, the father of three, who had worked in the plastics industry for the past four decades, was referred to a specialist and although he has been given medication, there is not much that can be done to stop the disease from progressing. “I went to see Professor Hardiman at Beaumont Hospital and she and her team were just brilliant,” he says.

“They didn’t make my situation better and pretend it was less devastating, but they told me no two People are the same when it comes to how it affects them. While I might see someone in a wheelchair who can’t walk, speak, or swallow, that doesn’t necessarily mean I’ll be the same. It could be me, but maybe it’s not – as it’s not the same process for everyone.

« I’m on a tablet now, but I’m not exactly sure what it does, except maybe my life to extend a couple of months. And at night I’m also on a ventilator, which has done my breathing really well, which seems to be the biggest problem at the moment.

« I’ve refused since my diagnosis, even if only I noticed – that’s how I am for example still on my walks, but much more slowly and under more pressure on hilly terrain. I can’t lift anything either, which is a shame because about a year ago I bench pressed 140 kg, but now I can’t pick up my grandchildren. ”

Although his life has changed dramatically and will continue to do so , Ger stays positive and encourages others recently diagnosed to try the same. “My advice to anyone who has just been told they have MND is to turn off the internet and put the phone down first,” he says. “Don’t do a Google search, just pay attention to what the experts tell you.

“ You should also accept any help offered, be it from the medical world or from friends and family. I used to be so frustrated and upset that I couldn’t close my jacket, now I’m just asking for help. With that in mind, staying positive is so important and mental health is huge on this thing. You can either let yourself go to a terrible place or go out and enjoy life.

« Neither of us get out alive and while I have MND someone who is fit and healthy can walk before me – we know it just not, so don’t let the disease rule your life, go out and enjoy everything for the moment. And I would love if people could check out the amazing work IMNDA does – I had never heard of them and I can tell you that they are the most incredible group of people who are doing so much for all of us with MND. So if you can support in any way it would make a huge difference. ”

There are currently more than 400 people with MND in Ireland and an IMNDA spokesperson said the charity is in dire need of public donations. « MND is often referred to as the 1,000-day disease because most people die within 1,000 days of symptoms appearing, » she said.

« At IMNDA, we strive to ensure that everyone has the care and attention He is receiving the support he needs to live as an active, independent citizen in his community.

“We are a small organization that relies heavily on fundraising to continue providing vital services to the MND community across Ireland . Over 80 percent of our income comes from fundraising and donations and we do not receive any government subsidies for the posts of our four nurses.

“So we have to continuously draw attention to MND in order to be able to provide our services. For this reason we are asking people again this year to organize Virtual Drink Tea events and help us raise awareness and funds to help people with MND get the support they deserve. ”

One Tea can be donated on imnda.ie or by SMS to MND at 50300 – SMS cost € 2 and IMNDA at least € 1.80. To organize a drink tea event, either register at imnda.ie or send an email to [email protected]

Motor neuron disease (MND) is a progressive neurological disorder that attacks the motor neurons or nerves in the brain and spinal cord. This means that the messages gradually stop reaching your muscles, leading to weakness and exhaustion.

MND can affect your walking, speaking, eating, drinking, and breathing. However, not all symptoms will necessarily affect everyone, and they are unlikely to appear all at the same time or in any particular order.

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