Walk Where You Can…a virtual Walk from Ballina to the IMNDA Office in Dublin… 230kms in May in memory of Eugene Loftus by Marie Loftus.
On Dec 3rd 2014, my husband Euge was diagnosed with MND. He had noticed a slight change in the muscle between his thumb and forefinger on his right hand. His hand got stiff easily and did not have quite the same strength. Initially he thought it may be Carpal Tunnel syndrome. His diagnosis was quite mind-blowing for us as a family. Always active and healthy, this fact was incomprehensible but he was still well. I was hoping the “second opinion” with Prof. Orla Hardiman, recommended by the consultant in Galway, would change this and maybe find some minor issue instead. The appointment in March 2015 in Beaumont, at the multidisciplinary clinic with Prof Hardiman, confirmed the diagnosis. We met 2 research students that day who invited Euge to take part in their studies and he was involved in a number of research studies during the last 5 years.
A new reality lay in wait. How to tell people? Do we tell people? It was only really when I heard Euge say to his best friends “I have come to accept it” that I realised this was not going away.
As we absorbed this new reality we took a positive approach and decided to live life to the full and to do as much as we could for as long as possible. On Nov 6th 2015 Eugene was delighted to welcome Drama groups and a wonderful audience to enjoy the 1st One Act Drama Festival in Ballina Arts Centre. As Euge’s needs changed we told family and friends- all of whom became an amazing support team for us during this incredible journey. We eventually registered with The Irish Motor Neurone Disease Association (IMNDA) and it was then we discovered this wonderful Association which has its finger on the pulse and knows exactly what areas of support are needed to help those living with MND.
In June 2019 Tea for MND, which is an annual event all over Ireland, was held here in Euge’s garden and raised €8,680. A really wonderful day happened with the help of friends and family where folks came and spent a few hours chatting, having tea and cake and having a word with Euge who loved meeting people. From the huge response the Association get they are able to provide extra home help/care hours to those living with MND. This service was such a practical support as it meant I could leave Euge in capable caring hands, go and do shopping, get out for a walk, meet friends on certain days of the week.
Euge continued to enjoy visits from family and friends with deep discussions around GAA and his beloved Mayo football team, history, politics, nature, music…the list is endless.
In August 2019 his motorised wheelchair arrived giving him independence and access to the farm, the garden and to shopping trips and outings to the seaside and the town where he grew up. He would roll and I would stroll! Euge continued to find the positive on a daily basis and because of the support we got from family and friends and the IMNDA, he remained at home throughout.
An email came this April from IMNDA announcing Walk Where you Can as a fundraiser initiative, and I let this thought percolate for a few days wondering how was the best way to go about it. Then I thought “What if I walked to the IMNDA Office?” which Google informed me was 230kms from home to Merchants Quay in Dublin. Lockdown was in place with a 2km limit for exercise so this would be a virtual walk to Merchant’s Quay in Dublin. Decision made, at 4.30pm on May 1st, I set up the Just Giving page which links directly to the IMNDA account where online donations go directly. I announced on my Facebook page my intention to walk 230kms (locally within the limits) during the month of May.
On May 1st at 6.30pm I decided to just to take the lid off the walk, so to speak, since it was so late. This first walk was along the perimeter of the field here where Euge left his mark on the land. The distance was 2.84kms …how was I going to do the next 227.16kms?
“Hope starts with one step. Change happens with many.” This is a phrase used by IMNDA and it stuck with me…I wanted to give back to this wonderful organisation who had supported us through Euge’s journey with MND. This Association provided us with vital support and meant that he was at home throughout that time. This would have been very difficult without the help of the visiting specialist nurse, Eithne Cawley-an angel- who liaised with local services advised and encouraged us always. The IMNDA funded the equipment requested by the OT. I am so aware of the cost of the practical equipment that gave Euge comfort on his journey with MND-the chair lift for the stairs, the various mattresses that had to be installed when his comfort was paramount, the motorized wheelchair, the amplifier which aided his speech to be heard when there was a group visiting. They also gave support to me as Euge’s primary care giver.
I decided to document my daily walks in words with photos which I posted on my Facebook page. This also afforded me the opportunity to highlight the work done and the support given to us by IMNDA. The weather was beautiful with blue skies and sunshine many of days in May. Ordinance Survey Maps which covered this area were my bible in planning each day’s walk and slowly as I highlighted the roads walked, and a spiderweb appeared of places I had been. What amazed me was the beauty I found on my own doorstep. Watching the flora and fauna, seeing the mountains in the distance and on certain walks getting a glimpse of the sea was a treasured delight. Each new route was an adventure. But the most amazing thing of all was watching the funds flow in. The JustGiving page sets an automatic goal of €250 and, I thought “sure every Euro helps.” By Day 9 the fund stood at €2,300 and I had walked 50kms! I woke, each morning, thinking about the walk planned for that day. The 5km limit was a joy for me as I discovered more routes locally and extended my daily kms some of which were loop walks and others were there and retrace walks.
After a week I found I could do 2 walks on some days to increase the daily kms as I knew my daily average needed to be at least 7.7kms. On Day 10 the weather changed again. The north wind came back and I needed to dress for winter walking complete with gloves!
On Day 16 I passed the 100kms mark. I celebrated with an espresso and a tasty snack from Boho Barista at the Quay. I wondered if my runners (quite a few years old now) would bear me along for another 130kms. I am happy to report they did remarkably well.
By Day 18 I had passed the halfway mark. I had walked 118 kms and the fund was now at an amazing €3890. I was truly humbled by the generosity of those who donated. Each evening after I posted my daily report and photos, I received messages of support which motivated me to complete every step of the 230kms by May 31st. I walked every day bar May 8th which was a rest day. The least I walked in any day was 2.84kms and the most was 14.33kms. I walked solo for the most part but as restrictions were relieved a little towards the end social distance walking was possible on quiet roads and a few friends on their turn walked with me. It was lovely to have the company, as up to that, I walked listening to the birdsong and sounds of nature, some podcasts or audio books.
I was reminded constantly of the challenge these unique times pose for those at home with MND or any illness for that matter. And also the challenge social distancing poses for those who provide extra medical care, physio, dietician, OT etc to patients at home.
We take our feet for granted and look at where they carry us every day. Only when a blister or some other irritation appears do we realise what comfort is. My feet had to be well cared for during this time…Vaseline applied to the toes and heels helped avoid Blisters for the most part. One long walk on a hot day caused one blister near the end of May. My advice…Vaseline and change socks half way through a long walk and check there are no creases to cause irritation.
On Day 28 the fund crept over the €5000 mark! I was totally bowled over by the kindness of those who donated-friends and family and even folk I did not know personally but who had been affected by MND.
On my last day, Day 31, it felt a bit strange, waking, knowing my goal would be complete after today’s walk. But…I knew where I was walking and that it would end at the sea-my battery recharger. I had the company of a Lynn, a lovely lady along for this final walk. She cared for Euge and truly she was an angel to us both. She is unique and we were blessed the day she came into our lives.
I have to mention here the team in Beaumont…even though clinic day was a long one, we always left feeling uplifted, energised and positive after meeting all the staff there. Thank you.
This walk was both a challenge and a therapy in equal measure. It gave me thinking and feeling time. Euge was amazing at noticing detail in the countryside and in nature so I saw with his eyes as I walked. It made me realise how much I learned from him. Euge’s positive outlook on life and how he dealt with his MND journey inspired me daily. He was an amazing man who impacted all who met him. Eugene died peacefully at home on Dec 12th 2019. This walk was done in his memory and to raise vital funds for those living with MND.
My walk started with the idea of walking to the IMNDA office in Dublin to meet all those wonderfully, helpful friendly people who I spoke to by phone. Put the kettle on…I’ll get there one of these days!
So far €6,675 has been donated. My deepest gratitude to those who have supported us and made this happen.