2 years on - MND & me

*sips a strong gin* Right, this is a heavy one so strap yourself in. 

Two years ago I lost the most important man that's ever been in my life. My first hero, my first role model. My dad. 

Ian Derek Thomas Sharp
10.06.59 - 22.05.18

*takes another sip of gin* My dad died as a result of an accident caused by a degenerative terminal illness called motor neurone disease (MND) or amyotrophic lateral sclerosis (ALS) if you're American. It's a rare disease and it wouldn't surprise me if you've not heard of it or don't know what it is as there just isn't the awareness for it in the mainstream media. As I use my blog as somewhere to write down my thoughts and be honest and open about subjects that are important to me, I'm going to be recalling what life was like living with and caring for someone with MND. My mum has given me the green light to talk about this FYI, I really want to spread awareness and it seems a fitting way to mark my dad's second anniversary.

So, what is it? MND is a significantly life-shortening and rapidly progressing illness that affects the brain and spinal cord which leads to muscle stiffening, weakness and wastage. MND can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe. MND progresses differently in individual cases, symptoms don't always happen in the same order and people may not experience all of them but the prognosis is the same for everyone. MND kills a third of people within a year and more than half within two years of diagnosis. It is a death sentence, there is no cure. 

Dad began falling in the autumn of 2016 but had some concerning symptoms of weakness and lack of energy since the spring. It was quite comical to begin with and we all used to have a laugh and a joke about him falling over. Yanno, it was just Dad falling over. Again. That September he would drive me in the horsebox to my horse show for the last time and by Christmas he wasn't able to walk well enough to join in with his choir carol singing. By the start of 2017 things had really begun to progress, he had to hang up his car keys after crashing his Land Rover off the end of our driveway (leaving Mum at the wheel of his pride and joy *gulp*). He was falling more and more but he just didn't have the muscle anymore get himself up. We'd have to enlist the help of friends and neighbours to come and help us lift this dead weight, with a face full of gravel to safety. He had test after test but none of the professionals could find what was wrong. By the summer he was confined to a wheelchair and his legs had finally given out.

As the year went by, Dad was still without a diagnosis. We had the house adapted with handrails and a stairlift to try and manoeuvre him more easily. We had the bathroom ripped out and turned in to a wet room and got him a mechanical lounge chair to make him more comfortable. He barely got to use any of it as the disease was progressing so rapidly. I cannot convey the torture of seeing someone who was once so tall and strong suddenly being totally reliant of the people around him. Physically, Dad was a complete shell of his former self. He was an ex bank manager, the breadwinner, a house-proud man devoted to the two ladies in his life. Damn, that man would've gone to the end of the Earth for me and Mum. We didn't always get on but he was ALWAYS my number one fan. Even as I journeyed in to adulthood, I was always his baby (I'm the only child), he kicked me up the arse when I needed it but with every passing birthday his heart broke a little bit more. He didn't kick me out when he found out I was partial to packets of Marlboro Gold cigarettes, although he did threaten to leave me to walk home 25 miles from Boroughbridge when he noticed I'd got my lip pierced sooooooo... Anyway, he was the best. The best of the best, in fact. Now it was my turn to look after him.

If I'm honest, I distanced myself a lot from the situation and spent a lot of my time at Luke's house. Dad's situation was completely anxiety inducing. I hated seeing him the way he was and I barely got any sleep as I was constantly listening out for him in case he tried to get up and fell or he needed me to get him something. Lord only knows how Mum felt as his primary carer. Her day was a cycle of LITERALLY having to haul Dad from A to B. From his bed to a wheelchair, to the stair lift, then taking the wheelchair downstairs, to dragging him out of the stair lift, back in to the wheelchair, where he would remain for the day until Mum got home from work - she was holding the fort, still going to work full time during the day and then looking after Dad at night. She's a superhero is my mother. An absolute superhero. A wrong move during Dad's routine could end up with one or both of them really hurting themselves. After one afternoon of Dad falling and spending THREE HOURS on the floor on his own, he got a red emergency button installed so that professionals could come and help in the instances where we couldn't get him up. His condition was getting worse and we STILL didn't have the answers.

October 17th 2017. After a second appointment with his neurologist and Dad complaining of weakness beginning in his right arm, the pieces were finally put together and he was diagnosed with motor neurone disease. Finally, a name for what he was going through. Mum and Dad came to terms with the diagnosis pretty quickly and were just happy that they knew what was happening, even if the future wasn't rosy. Although, me being me, I was about to throw a spanner in the works. On December 11th 2017 I found out I was pregnant.

The timing of my pregnancy couldn't have been worse (although it later transpired it couldn't have been better). Motor neurone disease was tightening it's grip on Dad and he needed more care than ever. Soon, I wasn't going to be able to do much and Mum would be left to be strong on her own. Bit by bit, Dad was being robbed of any sense of independence, his body was slowly shutting down and his years were numbered. He could barely hold a pen to write his name but AT LEAST he had the arrival of his first and only granddaughter to look forward to - a positive light in an otherwise dark future.

During Dad's illness, he never once felt pity. He & Mum tackled each day with bravery and tried to fill their time with laughter. Dad loved to host, so when they couldn't go and party with friends, the party came to them. When you know that your time is limited, you want to make the most out of it as you possibly can. His determination to lead as normal life as possible was one of his biggest strengths but it would also become his ultimate downfall.

Please note that the next part of this blog post contains some upsetting content.

Tuesday 22nd May 2018

This started as any other Tuesday in Mum & Dad's book. I had recently moved out and had arranged to see Dad on the Wednesday, only Wednesday never came. Mum had managed to get Dad downstairs and comfortable in the kitchen and she had gone to work for the day, I was also at work and blissfully unaware of the events that were about to unravel. 

All Dad wanted to do was to be as independent as he possibly could, he was very garden proud and there were some trimmings left over from when the gardener had been so, naturally, he wanted to burn them in the fire pit. Mum tells me that she had EXPLICITLY told him to wait until she got home and they would do it together. Alas, stubborn as ever, he embarked on what she calls "Mission Disobedience" and off he trundled down the garden in his wheelchair. Due to the progression of his MND, Dad had severely lost the dexterity in his fingers and the force of striking the match had caused him to drop it in to his chair and up he went in flames.

SOMEHOW, he managed to shout for help and get himself back down the garden, where his next door neighbour managed to get him out of the wheelchair and put him out. They are such heroes in my eyes, so so brave. I'm sure the image of Dad engulfed in flames is one that haunts them but I am forever in their debt for giving us the opportunity to say goodbye. 

Dad was airlifted to Pinderfields Hospital in Wakefield and I got a text from a family friend who had told me what happened, Luke and I came home from work early but we weren't going to go to the hospital as we didn't think there was anything we could do. We were going to go and see him tomorrow when he was settled and stable... but you know when you just get a feeling about something? We hopped on the next bus we could to the hospital and we were taken to a room where a consultant was talking through the situation with Mum, my grandma and Tony the vicar (they were on their way to see Dad and were greeted with the carnage, Tony had kindly driven Mum to the hospital). The prognosis was bleak, we could subject Dad to surgeries and skin grafts but, due to the MND, the likelihood of him surviving them was slim and even if he did, the best case scenario would be a permanent tracheostomy. Dad decided that he didn't want any intervention and he would be made as comfortable as possible and let nature take its course. 

He deteriorated very, very quickly and he passed away that night with myself and Luke, his mum, his wife and his granddaughter (who was cooking away nicely) by his side. Luke told him Penelope's name just before he died, he reacted to it, so I think he approved!

The circumstances were horrific, granted, but Dad got to go out HIS way, before MND took him completely. I am SO glad that he isn't here during the Coronavirus pandemic, if he'd still be alive even.

If you've got this far, thank you SO much for taking the time out to read our story with motor neurone disease. I really wanted to share this to try and raise awareness of what it is and what it's like. There really, really isn't the awareness or the funding for the charities that help the people living with MND. If you'd like to find out more or make a donation you can visit the MND Association or MND Scotland. There is currently no cure but hopefully one day we can live in a world free from MND.

Penelope was born in August 2018 and Dad most certainly lives on through her. She came along at the right wrong time, she's healed our hearts, although I don't think you ever heal from a loss like this, you just learn to live with it. I miss him so much and my heart hurts with all the things HE'S missing, although I don't think he's ever too far from us. 

Forever my dad, always my hero.