It was the bank holiday weekend and the sun was shining. For more than a year I could only fantasise of meeting up with friends or going out to events with fairly large numbers. The run up to the weekend was fairly difficult, my gastrostomy site was leaking, the pain set in and my skin became red raw. By Wednesday, treatment day with my nurses I was needing a swab taken and had a bit of a temperature. GP phoned me at 7.45am on Thursday morning to let me know antibiotics were ready for me. Woo hoo, what kind of person gets excited about antibiotics. One that wants to feel better. This weekend would normally be TITG® – our annual bike rally hosted by The Dunedin Chapter in Aviemore however it was cancelled due to Covid. Fortunately there was still time for fun and an alternative weekend in store for us down here in East Lothian. It still included some time with some Chapter members and the Harley – on Sunday I had a grand day out at Newhailes House.
As Alexandra and I arrived at Musselburgh the honest toon was looking very busy. Families walking in the direction of the estate of Newhailes House. This Sunday was a special day, there was an open day inviting members of the public. It was mainly a classic car event, with other super side lines. Dunedin had the Harley-Davidson® motorcycles, there were some sports bikes too, the fire brigade were there, the police, a fantastic array of stalls, and of course amazing classic cars. Plenty to keep us occupied.
As we walked into the grounds of the estate we could hear a very familiar sound. The roar of her Grandfather’s Fatboy. Parked in a line – the Dunedin Chapter Members and their Harley Davidson® Motorcycles. There was an eager bunch of kids waiting to sit on the bikes, lots of smiling faces. As we walked up towards Fattie we saw Steve giving a demonstration to a happy lad.
Alex and I walked round, thoroughly enjoyed the sights. Totally loved the cars, bikes, stalls, etc. Soaked in the atmosphere. Sat on motorbikes, looked at beautiful classic cars, clambered on tractors, enthusiastically stood in the long queue for the sit in the fire engine. We had a fabulous day all on our doorstep. I’m sure the Dunedin members enjoyed their day.
I’m nearly 55 years of age and the words Huntington’s Disease are heard and said without thinking. Not thought of as strange or unusual. Why because I first officially heard the actual word Huntington’s when I was approaching my teenage years. My aunt (my Dad’s sister in law) was diagnosed with it. My auntie Josie was a beautiful lady; inside and out. Anyone that knows me will know that I am a dog with a bone, when I hear something I want to know everything about it. Curiosity killed the cat but satisfaction brought it back. Thats me. In the mid to late 1970’s it wasn’t something you shouted from the roof tops. And the ‘grown ups’ discussed things behind closed doors. I heard this word ‘Huntington’s’ getting mentioned often and then started seeing a change in my beautiful aunt. As a family we all spent a lot of time together. I spent quite a lot of time with my aunt and uncle’s 4 children. One day I came out with it, I was almost 14 years of age and I felt I needed to know more, those days you just couldn’t jump on a computer and search google. My aunt was amazing, she was actually brutally honest. She told me she loved my honesty and gumption for asking. She said when the time would come that no-one would be able to understand her talking properly, in fact she may hardly not be able to be understood at all, she herself would still be able to hear and would understand everything. She said she was nervous of being a prisoner in her own body. She laid her hand on mine, my heart thumped so hard I could hear it echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “am I my Mother’s daughter am I not. I can talk for Scotland. Of course I will”. She said to me if any of my children get this I beg for a cure in the future. Huntington’s disease is hereditary and there is a 50% of inheriting it. Bang on in my aunts family the two younger children, Susan and Colin were diagnosed. Colin chose never to marry, however prior to getting confined to a wheelchair if Colin was still here today and was promoting awareness he would say It’s me Colin, I’ve got Huntington’s Disease. Are you listening?
So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. Your chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 an 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the UK. Unfortunately, as yet there is no cure and very little awareness.
The Month of May is Huntington’s Disease Awareness Month. The wonderful organisation; The Huntington’s Disease Alliance UK and Ireland are running a campaign Family Matters. The Alliance consists of four independent charities throughout UK and Ireland. The four independent charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease.
Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need.
My auntie Josie was such an inspiration to me. Despite her own fears and worries she brought up with her supportive husband, my uncle, 4 lovely children. In her early days she was a Sunday school teacher. A loving mum, a super aunt. My Mum said she made not just a great sister in law but a great sister. It seemed so quickly that her speech became slurred and for many they didn’t know what she was saying. Her hands and legs were turned inwards as time went on and walking went from slow, to staggering to not at all. In the early days some people would assume she maybe had a glass of wine or six. But soon it was apparent that it was much more. I always remembered the conversation we had that day, and I would blether and tell her of my day, and would not care how long it took, I would wait till she finished asking me the question. It was usually, how was my brother’s children? or or the like. One thing she never lost, despite getting this cruel debilitating condition was her caring nature. Life for my auntie Josie was difficult, but yet she had very happy times, such a loving caring devoted family surrounded by love. For my aunt her husband was her rock. He cared dutifully for her in the latter stage, with the four children rallying round as and when they could.
As a family we are all very close. Close brothers and sisters, nieces, nephews, aunts and uncles and cousins. We all saw and still see each other fairly regularly. Most definitely keep in touch. I spent many a day in my summer break with my Johnston cousins. One thing we certainly all do is look out for each other. Try and help or offer advice if we can, when we can. The four children that were born and could be carrying the gene did not get treated any different. Laughter, games, studying, work, etc went on. Then came the time for the tests. The two youngest, Susan (same age as me) and Colin tested positive.
Colin, is a fun character. My punk rocker cousin in his tartan suit. Who drove stock cars. Loved classic cars. Collected them, looked and drove them. Was a fabulous boxer, with numerous trophies. An independent soul. He never married or took a partner. Lived with his Dad then moved to his own home, he loved his own house. He loved his music even more and travelled to punk rock festivals. He went on cruises. Loved his family dearly. His nieces were everything to him. When he started to struggle with walking he took his two nieces Leah and Kara on a Cruise, they loved him so much they helped care for him at times when he was less able. Colin liked a rum and a dance, and when he had to get his peg feed and was in his wheelchair, he didn’t let things get him down. He would put a little rum down his tube and he took to the floor on his wheels in his tartan suit. The sad fact is Colin had to get a peg feed because he lost his swallowing function; this was a decision he didn’t make lightly. It was probably one of the hardest decisions he had to make. And I’m not entirely sure he really wanted it. For someone that was so active and loved to sing, dance etc. This disease is so cruel to watch. To see my beautiful cousin struggle to tell me he still loves me was so hard. But at the same time it was so good to see how courageous he was, putting all his strength into a conversation, that love was still there and he definitely could still make me smile.
A very happy memory I have is a family BBQ held by Susan and Colin’s sister Karen. We had a super time. As you walked into the garden you were welcomed with smiling faces, the sound of children laughing and adults chit chatting and generally having a great time. Karen’s children, Kara and Heather and Susan’s girls, Leah and Billy would get up at any time needed and automatically fell into the role of carers without looking like a carer. Just that help with a sip cup, or cutting up the food to the correct size. A beautiful caring family that looked after each other without having to ask; the automatic care, willing ear to listen, physical help, loving unconditionally.
Colin’s symptoms worsened. It became impossible to live in the house that became his beautiful safe home and despite having carers in several times per day and family popping in the heart wrenching decision of moving swiftly came into his life. Colin needed to go into residential care, the difficulty was finding one that took a person diagnosed with Huntington’s Disease. Much to Colin’s disappointment Colin lived the last days of his life in Balhousie Rumbling Bridge Care Home. Colin was no longer a five minute drive or a 15 minute walk from his sisters and nieces and close proximity to his brother, Billy, but a drive across the Forth. He was still easy enough to visit and my sister Hazel visited on occasions too, and at times took my Dad. Colin loved to get a visitor, whether it was a sibling, cousin or friend. Rumbling Bridge Care Home did a fabulous job in looking after Colin. Sadly we lost our Colin to Huntington’s Disease. We had a funeral in Edinburgh in true punk rock fashion at Colin’s request.
Susan continues to battle with Huntington’s Disease every day. I spoke to her on chat yesterday. And to her daughter Leah, we are so looking forward to the restrictions of covid getting lifted so Leah can drive her Mum down to mine for a visit. It’s a bit of an expedition, but will be worth it. Leah has room for Mum’s wheel chair in her car. I live in the country, the house is a detached, parking right at the front door. Plenty of room. And certainly no trip zones. So all good. I am so looking forward to seeing Suzie Pie, I haven’t seen her personally for a while especially due to covid restrictions. Susan’s speech is now slurred and walking worsened she needs the chair. I am so heartened she has a devoted compassionate family. Although it’s heartbreaking to see my cousin deteriorating so rapidly from the last time we met, the person I know and love is still there. Life for my beautiful cousin is like living on a knife edge. A simple meal, something most people take for granted is a terrifying ordeal. Every meal, literally any piece of food or drink that goes down is dangerous. Just recently Suzie pie aspirated into her lungs and then had to get treated for a severe chest infection. Unlike her brother Susan does not have a peg feed and is now passed the point of being able to get one. I long for our next meet up so we can have something that hasn’t been allowed for what feels like an eternity an almighty hug and we can spend some time together. We always share “cousin time” it just takes a little longer to have the conversation. But as they say Good things come to those who wait but better things come to those who are patient.
This disease changes the daily lives of everyone that is affected with it. The person that is diagnosed is eventually trapped inside their own body. Forced to get help from others, be it physical and emotional. Even the fittest and most ambitious of us, as time goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help and care both physically and emotionally. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease affects the daily life of the person with it, but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment starts to invade the house. Yes its a fabulous help. But at the same time, another tick of the box that the disease is progressing in the direction you were hoping would take a little longer.
I hope by reading a little about my aunt and cousins you have been able to open your eyes to Huntington’s Disease and I’ve managed to raise awareness of this crippling disease that only takes over the body of those diagnosed but can haunt the minds of all those affected.
The awareness month of May is what is needed to spread the word. Let people feel more relaxed and knowledgeable about the disease. Family Matters. Absolutely fabulous, please take a look at their website. I have also been heartened to see on the television on the BBC drama Casualty, A&E Doctor Ethan Hardy has tested positive for HD.
The Family Matters Campaign is to raise awareness of Huntington’s Disease. This can only be a good thing. They are inviting those who have experience of Huntington’s to send in any information they would like to share, in the form of pictures, words, thoughts; it can be a poem for example, a quote, a few photographs. These will be shared on a digital community space called The Living History Project – it will be shared on The Living History Wall
To help promote awareness of Huntington’s it is important to share information not only by talking about it, reading pamphlets, etc, but moving on to the digital age. Sharing on television, websites, social media, etc. As I said earlier the BBC have brought it in on the storyline on Casualty which is fabulous for raising awareness. Charities such as #FamilyMatters help so many people and work so hard especially promoting awareness of #HuntingtonsDisease during #HDAwarenessMonth of May. You can find a relevant organisation in your area:
@HDA_tweeting – England and Wales
@HDAssocNI – Northern Ireland
@HDAI_ie – Ireland
@ScottishHD – Scotland
The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene.
One thing I have to say I have rarely met a person with Huntington’s that has been a complainer in life. They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.
So while you may have been complaining about being trapped in your 4 walls for a few weeks or months due to Government restrictions remember the people that are fighting a battle to get out there all the time.