Long walk, amazing story

Timing is Everything. That short statement could easily be attributed to my Camino Trek between 14th and 19th October 2018 last.

It all began when I received the Spring 2018 Parkinson’s magazine containing the first advertisement for the Camino walk due to take place in October 2018. I immediately contacted Sabrina in head office for a brochure. When it arrived it was read and reread as I toyed with the idea of walking it myself. However at that time it seemed a step too far for a person in their 14th year living with Parkinson’s. I set about finding participants from within Cork Parkinson’s Association.

With a little encouragement we recruited 4 family members of People with Parkinson’s. Unfortunately 3 of this quartet had to drop out for health, fitness and personal reasons. My wife had good reason to question my ability to walk 100km in a foreign land. A conversation-inducing question at the family dinner table, (who thinks Dad could walk the Camino) elicited a 3 word 6 letter response: No, No, No. After that resounding vote of no confidence from the people I love, I thought they were probably right even though I didn’t like to admit it.

Looking back on 2018, there were a number of events which equipped me/encouraged me and ultimately convinced me to embark on the Camino Trek. In early April I was offered a place on a Parkinson’s SelfManagement Course, excellently presented by 2 HSE Occupational Therapists. A lot of useful snippets of information were gleaned from this course. A local Pharmacist corrected one or two misconceptions I had and also encouraged me to get my meds in blister packs to ensure correct timing of utilisation. After all, timing is everything…..

In May I was contacted by Teresa, a HSE Physiotherapist who had completed a LSVT BIG training course and offered me the option of undertaking the LSVT BIG programme. We agreed to set it up for September. I went on a sun holiday in June and found that the warm weather helped me to be ‘on’, most of the time. I was able to walk comfortably at the same pace as my wife and children. When I returned home, Ireland was basking in sunshine which went on and on. Enter West Cork Anne, a good friend, very practical and very positive, and a Camino Veteran. ”I really believe you could do it, Ted” she said. Timing is everything …. a shot across the bows at just the right time.

Enter Pope Francis. What has Pope Francis got to do with a mere mortal like me going to walk the Camino? Well, this mere mortal as a member of the local Parish Assembly was entrusted with the honour of representing the parish at the Festival of Families Event in Croke Park during the Pope’s visit. I personally look back upon the Pope’s visit as an uplifting experience. In advance I considered it to be a benchmark of my fitness and stamina. If I could survive the anticipated amount of walking, standing, hardship, could I consider myself a genuine Camino pilgrim?

And I did survive it. I walked about 24 kilometres over the 2 days of the Pope’s visit, all at a fairly fast pace. As well as my intuitive feelings. I decided I needed more reassurance. I had got that reassurance and even though my wife and family were naturally concerned about my welfare they could sense my desire, my ambition, my growing confidence and my determination and supported my decision to go on the Camino. On 11th of September 2018 (9/11), I confirmed my booking for the Trek less than 5 weeks before departure. A final warm up was a trip to the first day of the Annual Ploughing Championships being held in Tullamore. It was a very enjoyable day and I used the opportunity to visit 2 Camino companies and I posed the question ”do you think I could walk the Camino?“ Again they replied in the positive.

I set up an online donation to help look after the financial aspect of the trip. I was delighted by the response I received from old UCD Agricultural Science classmates, from friends, from work colleagues and from within Cork Parkinson’s and the encouragement and good wishes I received definitely helped me when I struggled on the route although they added a little more expectation.

The timing of my decision to go on the trek coincided with the intensive LSVT BIG programme which gave me huge confidence that, against all odds, I would Walk the Camino. While it was inevitable that I would tire as the week went on, at least if I was fresh at the start, I would give it my best shot. My preparations included a moderate amount of walking covering distances varying from 4kms to 12kms but as my Parkinson’s meds would be the petrol in my engine, as long as my arms and legs were flexible I would be happy. Other preparations included selecting 2 pairs of walking shoes, getting appropriate creams and bandages, selecting 2 nordic poles for the trek which proved to be absolutely essential, purchasing a poncho at the Ploughing Championships, visiting my chiropodist the day before departing to ensure my feet were in the best condition possible and, consuming regular portions of my wife’s fabulous brown bread to help my constitution. And another “secret weapon” – a small portion of Coconut Oil.

And so the day dawned. A 6.45 am departure from home required a very short interval for meds to click in. My Camino trek started with a crawl from bed to toilet to kitchen. If my wife had seen the efforts this crawl involved she would have been justified in cancelling my Camino trek for the good of my health. With a few minutes to spare my meds started to work and I was on track. A quick goodbye to my wonderful children, Declan and Caoimhe, who were charged with management of my small farm enterprise in my absence and I was off with my wife Bernadette, who took on the entire management of the family unit, to meet my fellow traveller Kate and travel onwards to the bus for Dublin. While Kate rested on the journey, my brain was active. John Lonergan ex-Governor of Mountjoy had spoken at a meeting in Kinsale 36 hours before my departure and I decided to email him.

“Morning John, I was at your talk on Thursday night which was excellent. I am now on a bus to Dublin to catch a plane to SANTIAGO to walk 100km on the Camino in aid of Parkinson’s Research. So what you might say? Well I’m living with Parkinson’s for 14 years, I need medication to get out of bed, I need medication at 5 other times every day, I qualify for a parking permit and I hope to walk 100Km over the next week. Would you be interested in a small bet? In the unlikely event that I complete the walk will you make a small donation (€10+) to my fundraising page www. idonate.ie/TedtoCamino and in the likely event that I fail to walk it, I will buy your book! Regards Ted“

“Good morning Ted, well done, hope you have a most enjoyable walk and trip. I will indeed make a donation to your fundraising page, no problem. Sorry I missed talking with you on Thursday night. Very best wishes for now. John.“

And so we arrived at Dublin Airport. Paula Gilmore and myself embraced warmly and she introduced us to our travelling companions. Mary O, Mary M, Miriam and David L, Ann D, Fiona, Nicola K, Yvonne S, Kate W and Louise. As we waited at the Departure gate I almost had to pinch myself to see if this was really happening. Then the call to the gate was announced. There was no going back now!

In Santiago Airport we were met by our guide, Emmanuel and ferried by minibus to Sarria. We were struck by how long it took to reach our destination. The following morning, at 8a.m I headed for breakfast which was in a coffee shop 500 metres from the accommodation or Pension. I set out in semi darkness. My brain froze and I came to a halt. Half joking/half serious I said to Paula that I would pass her out on the walk later on in the day. I ran out of the freeze and reached the door of the coffee shop. Again I froze badly which was exactly what I didn’t want to happen. Some of the group looked frightened at my disability. I wondered should I have come on this trip at all. I need food to get me moving every morning and a pre-breakfast stroll is a luxury that has long since dropped off my radar. I used a bit of mindfulness to get out of that freeze. Paula assured me that every other morning breakfast would be nearby, which it was. I had put the relic of St. James, which a kind lady gave me a loan of for the trip, safely in my rucksack. We set off for Portumarin firstly getting our pilgrim passports stamped in the church in Sarria. Almost immediately on departure it started to rain and my poncho was pressed into action.

Along the route we saw hundreds of pilgrims at various stages of the journey and we were struck by the number of young people among them. The first thing I noticed was the willingness of my fellow pilgrims to assist me wherever necessary. The first morning was probably the wettest we encountered. When we arrived at our lunchtime venue, Cafe Seneda, we were drenched. The cafe owner promised a sandwich which would be the best we ever had and it certainly lived up to our expectations. 3 members of the group headed off and I set off to catch up with them. However, I didn’t catch up and after a kilometre or so I realised I had wandered off the Camino. I used Google Maps to confirm that I was going in the right direction and I marched on. I used this time to send a few short texts. “Greetings from wet Portomarin, Santiago de Compstella, Northern Spain on the first day of my Camino 100km Trek”. Within minutes the weather changed and I felt a bit of humour wouldn’t go astray so another text said “Correction, the rain in Spain has gone to the Plain and the Sun is now shining on the Camino! “ After about an hour “off Camino” I rejoined the Camino route and walked on to Portomarin. Amazingly I hadn’t met any other member of the Parkinson’s walking party for the previous 3 hours. Those who arrived ahead of me cheered on my arrival at our night’s accommodation.

A very enjoyable evening followed with a nice meal and we continued to gel as a group. I slept well, medicated around 7am and I was second down for breakfast fully mobile. I was confident that I could last the pace for the day ahead. A kilometre or two into the walk, we started a long up-hill walk and almost simultaneously heavy rain arrived. Nicola had prepared a sandwich at breakfast time and she gave me half. The lunch time stop was in a very quiet location with beautiful soup being served. The walk on day 2 seemed a little shorter and within sight of our destination we stopped at a cafe for refreshments. Nicola shared her bowl of soup with me as it was huge. As we relaxed in the afternoon sun we were joined by 3 girls from Dublin. We swapped suggestions on exercises to keep us walking. On to our accommodation for the night which was superb. After a beautiful meal I sang but nobody else followed!

Day 3 we departed the guesthouse which was shrouded by early morning mist. We were now slowly becoming experienced endurance athletes. I was a special category athlete requiring medicine, food, water and determination in generous quantities. We stopped for lunch where I had the most enjoyable bacon, egg and chips and Mary M told us about her friend who was related to Jedward. Yes, they seem to be as mad in real life as when they perform. Energised by this high calorie meal we continued to our next stop off, a small hotel. I stopped for water a kilometre from the night’s accommodation and I struggled to get going. I ran out of my difficulty and reached the hotel more off than on. I posed for an action photo outside the hotel and then struggled to my bedroom. The group had now gelled and my comment the previous night that I felt we were all making 11 new friends was being validated. I had breakfast with this member the following morning with a limited conversation. Conversation was more forthcoming that evening when I said “At breakfast this morning I was thinking you have a great appetite!” Day 4 had been a very enjoyable experience starting with a walk with two others where we spoke As Gaeilge.

Almost without realising it, I now had 80km walked and I was within sight of completing the 100km goal. However, I struggled badly from the evening meal to my bedroom and there were real concerns within the group as to whether I could continue any further. I slept well and on waking I WhatsApped the group for someone to bring some water to Ted, the 100km Man! I knew why I was struggling, I had Parkinson’s after all. I had no intention of pulling out now and spending the rest of my life regretting it.

I was gung-ho starting off, however, a steep uphill climb caused me to struggle. A natural stone paving walkway followed and suddenly my left foot started to lock. I could stand but I couldn’t walk. I thought about all who had wished me luck on the trip. If I ever needed luck I needed it now. I started counting in English and Irish in an effort to get moving without success. Kate, whose assistance was crucial throughout, started counting in French. We started singing. We sang 4 or 5 songs to no avail. However, with my next singing effort I struck gold. Ar nAthair got me moving and mentally I breathed a sigh of relief. I walked on, had a few ‘feet up on a chair’ stops at a couple of cafes and reached a cafe for lunch, Nicola and Kate and I had a very welcome lunch. Nicola needed assistance to eat half her burger so I obliged once again.

This lunch really energised me and even though Nicola and Kate set off at a reasonable pace, I felt it wasn’t fast enough. I had developed a number of walking styles, the fastest of which was what I might describe as a lower limb speed walk which I reserved for when my medication was working best. I took off and over perhaps 2km I barely hit the ground. I passed out walkers who were walking at a brisk pace and also passed out the strong walkers who were overtaking the brisk paced walkers. I would conservatively estimate that I overtook in the region of 200 people. For a brief 8 to 10 minute period I have no doubt I was the fastest person walking (excluding runners) on the entire Camino.

I was delighted to push aside memories of the episode earlier in the morning when for 5 or 6 minutes I was probably the slowest person on the entire Camino apart from people who were actually stationary. As I approached a vehicular crossing my balloon burst when Emmanuel came into my wide range view. How did he do that I asked myself. I discovered later he actually had to run to catch up with me. At least he now knew that I could move well, most of the time.

Many times during my preparations for the Camino I had wondered what would it be like to reach the 100km mark. It was appropriate that Paula Gilmore was my companion at the time I realised my dream. The moment crept up on us as we chatted about anything under the sun. I asked Emmanuel, the guide, how far more to the 100km mark. He said congratulations you are there just now. I raised up my arms in celebration. The truth is I could do no more. I was physically drained and walking on adrenalin. I couldn’t jump up and down with excitement as newly crowned GAA All-Ireland champions might do. It didn’t matter that I used the wall of our guest house to support myself as the celebratory picture was being taken. I had reached my goal. I had walked the Camino. I was going home full of pride, full of passion, full of satisfaction that no one can ever take this from me. I may appear frail on the outside but inside so strong, inside so strong. I moved slowly to my bedroom in what was a beautiful guesthouse. I was just drifting off to sleep when an extremely loud fire alarm broke the silence. Soon Paula was at the door to tell me that it was a false alarm and asking if I was ok. I shared with her the theory that if you tell a Person with Parkinson’s there’s a fire they will be able to run. Jokingly Paula said there is a fire. I was so tired I could not have run out of the building even if I was paid to.

Timing is Everything as I said before. Now it was time to inform my family of my achievement.

My wife, Bernie, and daughter, Caoimhe were thrilled at my news, as was Declan who sent me the most beautiful WhatsApp message “I am so proud of you, Dad, well done on walking it all, ring me later..” WOW it’s not every day a parent gets such praise or indeed encouragement to phone their teenage offspring, it certainly was a Moment in Time for me.

Cheers rang out when I arrived at the dinner table that evening. Though I walked an additional 5k to the city boundaries the following morning, reaching the 100k mark was my dream come true. I was honoured to attend the pilgrim Mass in the beautiful Santiago De Compostella Cathedral. I sent a picture home with the message: Greetings from Hotel Luz, Santiago De Compostella, After 106km my Camino trek is complete, Veni, Vidi, Vici. Time to put the feet up. The following 24 hours were for relaxation and recovery and Paula, Nicola and Kate helped as I re-adjusted to a slower pace of life. I was happy to come to Spain and even happier to leave Spain. Pilgrimage complete. Homeward bound. On arrival home my wife commented “you look better than I expected.” I slept well that night. I had to be pulled out of my bed the following morning but I thought to myself very few people are pulled out of bed in a state of euphoria! Two hours later I went for a family walk. After a short distance my wife told me to stop galloping!

It was the experience of a lifetime. Many times over the past 13.5 years of my Parkinson’s journey, I have been unable to walk even one metre. To walk 106000 metres was God’s blessing on me. If you have a dream, an ambition, a bucket list of 1 before 100, or 40 before 40, go for it, Every step is a Victory.