Spotlight on members of our community living with neuromuscular conditions: Donal McTernan
International Myotonic Dystrophy Awareness Day is on 15 September. There are two main types of myotonic dystrophy: myotonic dystrophy type 1 (DM1) and myotonic dystrophy type 2 (DM2).
DM1 is further classified based on the age at which symptoms first appear. These include congenital myotonic dystrophy (CDM), juvenile-onset adult (JOA) DM1, and adult-onset DM1. Each form can affect the body differently and may involve different care and monitoring needs.
Myotonic dystrophy is the most common form of adult muscular dystrophy. It is a rare, multi-systemic, inherited disease, caused by a mutation that prevents genes from carrying out functions properly. It affects different body systems and the severity of symptoms and age of onset can vary greatly amongst individuals.
Special thanks to Donal for sharing his story and raising awareness about myotonic dystrophy.
Name:
Donal McTernan.
Age:
55.
County:
Kildare.
Type of neuromuscular condition:
Myotonic dystrophy (congenital).
At what age were you diagnosed?
I was around 24 years old.
What were your first symptoms?
My hand grip, the strength of my handshake. I went to my GP at the time and said, ‘There’s something wrong with my hand’. My GP didn’t think anything was wrong. He had never heard of myotonic dystrophy. Then I went to a consultant neurologist in the Adelaide Hospital. He shook my hand and said, ‘I think I know what this is’. And then he told me what it was. He wanted to know how many brothers and sisters were in our family and he wanted to see them all, and my parents as well. Genetic testing was carried out to confirm the diagnosis of the condition.
Do you have other family members who have the condition?
Three out of six children in our family were diagnosed – one brother, one sister and myself. So that’s 50 per cent. My father was a carrier.
What do you find to be the greatest challenges in living with your condition?
Employment has been one of the greatest challenges because, for a lot of positions in middle management, the first thing that happens in an interview is a handshake. I think, if you come down to the last two or three, some employers may be looking for any kind of weakness. Also, isolation is a challenge. Because of mobility issues, I don’t get out as much. I make sure to meet friends every couple of weeks for a cup of coffee, though.
Is there anything you’d like people not to assume about you because you have the condition?
Exclusion; because of my physical disability, people might not think that you’re able to do something and they might exclude you from their plans. It would be better for people not to assume and ask anyway.
What are your greatest accomplishments?
Career wise, I was part of small team that went to Glasgow to establish Magner’s cider there. And, following its launch in Ireland, I was involved in building the distribution of Lucozade Sport with retailers throughout the country. I used to do a lot of fishing and I qualified for the Leinster final. I can’t do much fishing now because of my balance issues.
How has living with your condition influenced you into becoming the person you are today?
It has been a limiting factor in the last five years. It is what it is, so you have to be as positive as you can. I have it, but it doesn’t have me!
Is there anything you’d like to say or offer as advice to a person recently diagnosed with the condition?
First, to accept your diagnosis. This could take a few years. It’s not going to go away; if you have it, you have it. Focus on something you can do and do well, particularly if you enjoy it, for example, painting, arts and crafts.
What do you want the world to know about your condition?
Most people you mention muscular dystrophy to haven’t a clue about the condition. We need greater awareness about the condition as a whole.
Muscular Dystrophy Ireland supports people living with myotonic dystrophy and many other neuromuscular conditions. If you have any questions, you can contact us on our Information Line on +353 01 6236414 or on http://www.mdi.ie/contact.
You can find out more about myotonic dystrophy here and here.
Disclaimer: The views expressed in the content are solely that of the interviewee and do not necessarily reflect the views of MDI. Furthermore, please note that while MDI shares information about neuromuscular conditions, we do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.