Journey of discovery after a loss to motor neuron disease

When Alisdair Anderson met Ruth Staines in 2015, the pair hit it off immediately. After first becoming friends, over time they became a couple making plans for their future. But despite being only in their 30s, the couple never made it that far.

Last year, Ruth was diagnosed with motor neuron disease, or MND. She died in April 2021.

"Ruthie loved her country and was very proud to be Irish, but she also loved to travel and work in different countries, eventually moving to a town called Nerja in Spain, " says Alisdair, who is originally from Scotland. "Nerja was my second home after my dad and stepmum moved there in the 90s and I was working in a bar there in 2015, where Ruthie had become a regular. I offered to walk her home one night and I must have seemed dodgy as I discovered afterwards that she was living in the next street, but I must have gained her trust as we moved in together a few months later.

“It was as if I had known her my whole life – we shared a lot in common such as leaving home at a young age, travelling and working in different countries and also sharing the same birthday. We also had a passion for dogs and, through a local charity, started fostering abandoned puppies. But we have always been independent people, and both had our own paths, so went our separate ways for a couple of years. But in an incredible twist of fate, we both ended up working next door to each other in Dublin, where our close friendship was rekindled.”

Share your story: Is Covid-19 causing problems in your child’s school?

---

Trouble with your eyes can strain your brain

---

There are a lot of Marys on the road to Kerry

---

Alisdair, who is a chef, says when Ruth was diagnosed, he stopped working to take care of her at their home in Stoneybatter.

"Ruth first developed noticeable symptoms in January 2020, when her left foot started to weaken, causing it to drop," says the 38-year-old. "She was eventually diagnosed on Thursday, May 14th, 2020 by the neurological department at Beaumont Hospital. And while this was shocking and devastating news to all her family, friends and anyone who knew her, she remained strong even in the face of such horrendous news.

"Most of us quickly scrambled to our phones and laptops to start researching motor neuron disease, looking for anything positive, but to be honest the information was confusing as my only knowledge came from a film about Stephen Hawking.

I thought we had at least five or 10 years. I was totally wrong

"In this story the symptoms seemed to move relatively slowly, so it gave some hope that there would be time at least to get most of the bucket list ticked off – Route 66, Tour Australia and skydiving, to name a few. I'd read something terrifying statistics about ALS [amyotrophic lateral sclerosis is the most common form of MND] such as the fact that 50 per cent die in the first year and 75 per cent in the second.

“But I convinced myself that Ruthie didn’t have ALS, she had MND like Stephen Hawking, so I thought we had at least five or 10 years. I was totally wrong because ALS is the same disease as MND, but I was still convinced that she would be around for at least a few years to come, as she was a perfectly healthy and beautiful young woman.”

Drug trial

“Then, not long after the diagnosis, there was an opportunity for Ruth to become part of a drugs trial, so I believed there was hope on the horizon. But something which still haunts me to this day is that there was a 25 per cent chance that the drug could be a placebo and although we never found out if it was or not, I really don’t think it is fair to give a placebo to a terminally ill patient, particularly one so invasive which could only be administered through the spinal cord.”

Sadly, Ruth was taken off the trial at the end of November 2020, and over the course of the next few months Alisdair, along with her family and friends, did their utmost to make her life as comfortable as possible.

“Being taken off the trial was a devastating blow as it was the only thing which could potentially stop the disease from progressing,” he says. “There were some very sad days, but Ruth was always so positive and optimistic and never lost her sense of humour – I believe this is a trait that she and her siblings, Stiofán, Mark and Luke, have in common.

We were also blessed to live in such a great community

“Her close and vast extended family visited regularly and the love and generosity I witnessed was unbelievable. Because of Covid, we were restricted but we made the most of it and made every day into a celebration.

“We were also blessed to live in such a great community, sitting out on the stoop most evenings sharing stories with the neighbours – and in an act of incredible generosity, the staff at the Glimmer Man, Ruth’s favourite bar, had a whip-around and bought her a nippy little electric chair which allowed her to get back in the kitchen, doing the little things we all take for granted. It really did make a massive difference.”

Along with seeing friends and family, the pair also took several trips, including one to the place they first met in Spain.

Then, last April, at just 31 years of age, Ruth died.

Devastated by his loss and wanting to do something to preserve her memory, Alisdair set about organising a fundraiser to both raise money and awareness into the disease which took Ruth's life, but also to complete some of the activities she had always dreamed of doing (See the Irish Motor Neurone Disease Association's website.) So he decided to undertake the mammoth task of cycling from Dublin to Nerja and also to do a skydive in Ruth's memory.

Route to Spain

“After Ruth passed away, I was spending a lot of time alone at home alone apart from our dog Rua, who we adopted from DSPCA last year,” he says. “I didn’t feel ready to go back to work, but didn’t think it was a good idea to stay at home as I wasn’t in a good place mentally or physically.

"Before Covid, I would cycle roughly 20km a day but that had been well over a year ago, so I said I would give myself plenty of time [to get to Spain], go at my own pace and try not to get injured. I bought a map and planned the route, starting from our home in Oxmantown Road then heading down to Baltinglass, where Ruth's brother Mark and her friend Kevin Wall joined me to Rosslare. I was also joined by Malcolm McGrath, a keen cyclist whose wife is suffering from MND.

"From there I took the ferry over to south Wales across the Brecon Beacons and on to Bristol, where her brother Stiofán joined me down to Portsmouth. I then took the ferry down into Normandy in northern France, then headed southwesterly to the Atlantic coastline, where I met up with Stiofán again from La Rochelle to Bordeaux – then up and over the Pyrenees to the Spanish border.

"Once over the border I headed southeast and down past Valencia, Xabia, Benidorm, Almeria and eventually on to Nerja. I left on Friday, May 14th, which was one year to the day of her diagnosis and finally crossed the line in Nerja on July 17th. There was a warm welcome for me as I passed the finish line with lots of old friends and family congratulating me, but it didn't feel right to be congratulated – I didn't feel like I had achieved anything, after all my efforts my angel Ruthie was still gone.

Terrified of heights

"The skydive happened as it had been a big one on Ruth's bucket list, but due to Covid restrictions we were unable to organise that. We are both terrified of heights, but I have no doubt that if I had managed to arrange it, she would have done it. While I was on the cycle, I suggested doing it as the fundraising had slowed down, so I announced that if funds got to €45,000 by June 10th, I would do a skydive (to donate, visit justgiving.com/fundraising/ruth-staines).

"I didn't think it would happen, but the donations came in and there was no getting out of it. I realised that people had paid good money for me to jump out of a plane, so I decided that the skydive would be my final act of the fundraiser. It just so happened that it was going to be the highest jump in Europe at 15,000ft of 4.5km in the sky – it was a terrifying experience and once was definitely enough, but I have no regrets."

After his gruelling cycle and scary skydive, Alisdair, who is still in the throes of raw grief, would advise others to spend as much time as possible with their loved ones and give their all to them in their final days.

“If I could give advice to anyone else going through a similar situation, I’d say, just give the person you love anything and everything they want, no matter what the request is,” he says. “Give them your hands, give them your feet, give them your time and let them borrow them for a while – it’s all you can do.”