Lisburn Dad vows takes on Multiple Sclerosis (MS)

My name is Ian, I am a 49 year old Dad of twins who are 5. Those who know me will know that I like to have fun and always have a joke or funny story in any situation. What most people don’t realise however is that behind the smile and the banter, there is a fight taking place each day – a fight to move, a fight to live, a fight to survive.

Rewind to 2003, I was in good health, I was driving a lorry upwards of 50 hours a week and then at home I was helping with the family dairy farm near Loughbrickand for a further 20 to 25 hours a week. I had bags of energy and the future seemed mapped out as I was destined to eventually take over the family farm. Farming was in my blood and I had plans and dreams for the direction the farm business would take. Farming was the only thing I ever wanted to do, it was my dream job.

Things changed at the end of 2003 when I noticed some balance issues and some tingling. After some medical tests and assessments, I was eventually diagnosed with MS in early 2004. The diagnosis was confusing at first as I didn’t understand a huge amount about the condition.

What is MS?

Ms is a lifelong condition that effects the brain and nervous system. It is caused by the immune system mistakenly attacking the brain and nerves. It is not know why this happens and there is no cure.

It effects every sufferer slightly differently therefore every MS warrior’s story will be different but for now, this is my story …

I tried to continue working, but my body would not cooperate and I had to drastically reduce my working hours. I recall one incident of walking out to the field to bring the cows in at milking time, my legs became so weak, I could no longer walk and fell to my knees in the field having to get my father to come and get me in the jeep. The condition started to dictate what I could do and the ever increasing list of things that I could not do. My balance and coordination gradually decreased. As much as I didn’t want to, I had to admit that I needed the use of walking aids to continue to be mobile. At this stage it was no longer safe for me to manage farm animals, having had some falls whilst trying to look after them. My father passed away around the time that I met My wife and when we should have been making plans to run the farm as a successful business, It was instead decided that I needed to sell the remaining livestock and rent the ground out to be farmed by others. At this point, my mental health deteriorated as my dreams of farming were shattered and all I was able to do was watch as other people farmed my land

Depression was a low and lonely place for me for a time while I assessed my life and attempted to come to terms with this devastating illness and it’s effects. In 2013 I sold the farm which in itself was traumatic and crushing, something I never imagined would the on the cards.

My wife and I moved away to a lovely semi rural home on the outskirts of Lisburn. My MS symptoms continued to progress at a rapid rate, and my mental torture continued. My MS had started out as Relapse and Remit but had by this stage progressed onto secondary progressive MS which means my symptoms are always progressing meanwhile my level of disability increased by the day, week and month.

Balance and coordination continued to worsen and falls became common place, with more hospital admissions and ambulance calls than I care to remember. I became wheelchair bound and bed bound. Eventually health and social care professionals including social workers, physiotherapists and occupational therapists decided that it was no longer safe for me to live at home without an extensive care package. Which brings us to where I am now. I am completely dependent on my wife and carers for personal care, transferring between wheelchair and hospital bed and for my food and medications etc. It feels at times like I have lost all independence and dignity. Every day tasks can be a challenge that sometimes seem like a mountain too high for me to climb. I am no longer able to drive, I have dexterity issues which means I find it difficult to hold a knife and fork or write a simple card. I have constant pain and stiffness and overwhelming fatigue and weakness and growing cognitive impairment. A lot of the time I feel like I am going from day to day in basic survival mode. Relationships have suffered along the way and friendships have unfortunately been lost as others struggle to understand the challenge of living with a chronic illness.

In 2017, after years of waiting, God blessed us with our little miracle twins who have given me the drive and determination to fight this. I want to stop this downward spiral of worsening symptoms and I want to take control of my story from here on out and take control of MS instead of it controlling me. I will do anything I can to improve my quality of life and improve my ability to be a good, active, hands on dad.

I have tried many treatments and therapies over the years many of which have made me feel even more ill with terrible side effects which always outweighed any benefit by far. There is no cure for MS, the treatments available are designed to slow down progression of the disease and decrease relapses, they are not a cure by any means. I have been unable to find one that fits with me and does not make me ill. The last disease modifying treatment I was offered came with risks of even more serious side effect of developing a condition known as PML which could attack my brain and could be fatal. I decided against that and as none of the treatments available have worked for me, I have tried to go a more natural route. I have always believed that one day there will be a cure and I remain optimistic that this will be the case. I research advancements and news on the condition constantly which was how I found out about MSCs.

There is hope..

Mesenchymal Stem Cells (MSCs) are one of the most researched types of regenerative stem cell based therapies. They have diversified capabilities that can lead to promising outcomes for various conditions including MS. MSCs are widely used in the treatment of MS due to their self renewable, anti inflammatory and immunomodulatory properties. What they hope to achieve is regulation of the immune system and to stop if from attacking itself which is the case in conditions such as MS. There is the potential and the ability for these stem cells to replace injured tissue (regeneration) and therefore it’s a possibility for the body to heal somewhat and reverse some of the damage that has been done. This is my dream and my goal. This treatment is offered by a private clinic on the Cayman Islands. I would be there for approximately 5 days.

MY dreams for the future..

My dreams for the future are to kick a ball with my son, to play chase with my kids, to dance like no one is watching, to take a stroll on the beach with my wife, build sand castles with my children and one day I want to walk my daughter down the aisle. I believe that MSC treatment has the potential to help me turn these dreams into a reality.

How can you help?

We are reaching out to our family, friends and community asking for help and support to achieve this life changing treatment. We will be organising various events over the coming months to raise funds and have some fun along the way! Any amount that you can donate to this cause, no matter how small, will make a difference to our fundraising journey. We thank you from the bottom of our hearts.