‘Nothing to fear only fear itself!’

Having been diagnosed with Motor Neurone Disease 12 months ago, Crossdoney woman Marilyn O'Connor felt that the type of care she was getting needed to change.

Last year, she hosted a Valentine's Ball fundraiser for Irish Motor Neurone Disease Association (IMNDA) and is set to repeat it.

“I was attending a Dublin hospital and, as wonderful as the staff and everyone up there were, I still felt very disillusioned. Walking down the corridor to the waiting room was like walking down a tunnel of black hopelessness. I was sitting in the waiting room, in pure despair, and coming out with no conclusion, or resolutions, and feeling worse than I did before I went in,” she recalls.

MND is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting. Around one person in 30,000 develops MND each year. In Ireland, this amounts to around 150 new diagnoses every year.

After much research and consideration, Marilyn decided to take charge of her own care.

“I've always been a great believer in alternative medicine. I was attending outpatients every six weeks. I was being seen by a physio, having my bloods done, speech and language, etc. I wasn't hearing anything I didn't already know. I wasn't feeling any better. If anything, I was feeling worse,” she recalls of her thought process.

Believing she had got as much help as she could get from conventional medicine, Marilyn decided to pursue a different path.

“I began to look into Ayurveda Medicine. It's based on a selection of herbs, vitamins, diet, and healing massages. I found a practitioner in Dublin who gave me herbs and vitamins. I started to feel better,” said Marilyn while demonstrating increased mobility in her arms, which she believes is a result of the treatment.

“My body is stronger and my general health has improved,” she adds.

Her Ayurveda Medicine practitioner recommended Marilyn go to India for intense treatment. “I flew to New Dehli and made my way to Rishikesh in northern India. When I got there, my room was up two flights of stairs. I had to be carried up and down on a chair. But, by the third day, I could walk it, aided, but on my own two feet,” says Marilyn.

The treatment there involved different massages, using herbs and oils. “For example, I bathed in milk with special herbs. I had a better journey back (home) afterward and feel amazing as a result.”

The trip cost €3,500 including flights, treatments, meals and accommodation.

The treatment claims to be beneficial for a range of conditions, not just MND.

“I'm continuing with the medicine and hope to go back,” says Marilyn.

“I'm not worried about anything. I can see beauty everywhere I look. I always loved nature but, since I got sick, I appreciate it a million times more. We're all connected to nature and it is very healing, the little things give us the most joy. If I went to a restaurant and paid €100, I might say that was nice, but it wouldn't give me as much joy as sitting here watching the sun set, once it's not raining,” says Marilyn with a laugh.

Adding a note of caution to those seeking alternative medicines or treatments, Marilyn urges others to watch out for those who make promises that are to good to be true.

“I was looking at one in Thailand, that promised amazing treatment but it wasn't what it seemed.

A family member who works in the medical field looked into their credentials and we decided it didn't add up. They were able to reply to my messages instantly, regardless of the time difference and I thought, if something genuinely was world class, then they wouldn't be as quick to respond.

“One of them who was going to do my stem cell treatment was an Ophthalmologist and had no qualifications for the area. They were looking to charge €60,000. It's shocking that people can prey on vulnerable people,” says Marilyn.

“I'm not a laughing Pollyanna,” she adds, referencing the titular character of a 1913 novel, who remembers pleasant items more accurately than unpleasant ones.

“It's [MND] extremely debilitating, I need 24-hour care. I feel guilty for feeling like such a burden on people, even though I'm told that I'm not. I went from being very independent, to very dependent on people,” reveals Marilyn of her daily struggles.

“I'm better than I expected to be. It [the disease] progressed very rapidly until February.

“My family and family friends have been very good. For me I have a long way to go I believe there's nothing to fear, only fear itself. MND is horrible it has no boundaries. It will take me eventually. I won't let it take me as a victim. We'll be on par. It's going to get worse before I go, but it won't take my mind, my fight, or my peace, calmness, and acceptance,” says a determined Marilyn.

She also hopes to run a her Valentine's Day 'Dance While You Can Ball', in February 2024, having raised €16,000 for IMNDA earlier this year, while also raising funds for a cancer charity.

“I lost my husband to cancer nine years ago and no family in Ireland hasn’t been touched by it. I want to raise twice as much next so it has to be bigger and better than before.”