Fun granddaughter’s can bring

Our house is usually always full of chatter. We have the uncanny skill of speaking and listening at the same time. Grandchildren and labradors bring much needed laughter. They are my essential sunshine on a rainy day. Most definitely turn my frown upside down and oh yes help me smile each and every day. I can always say what great fun granddaughter’s can bring.

If you were to add the age up of the three of them you only reach the ripe old age of nearly 12. Firstly there is Alexandra. She is the eldest at just turned 6, Ellie comes second at 5 years of age and Luna will be 2 at the end of the month. The girls all play so well together, shrieking up and down our hall. Running around the garden. Playing with the garden toys or walking the labradors in the back field together with me, all of us singing and chatting away. The last time the girls were playing together they went to Vogrie Country Park and what fun they had.

Individually they all like to come play at ours too, get some grandparent time. Bake cakes, do some arts and crafts, play games, garden with Granny, clean the Harley-Davidson with Papa and they most certainly love getting in the Wetroom and having a long shower, playing water games, singing at the top of their voices. We all love to go walking with Buddy and Bella my Labrador retrievers. Our back field is ideal, a wonderful safe environment for both dogs and children. Or go to unleashed Dog Park at Pencaitland and enjoy some fun.

It can be the darkest day, you could feel at your lowest ebb and these little cherubs will cheer you up no end. Melt your heart on the coldest day and yes oh yes they can all talk. Proper little chatterboxes.

This Easter weekend was particularly lovely. Alexandra helped Granny put some stickers on the window. Girls helping Papa with the ride on mower. Then oh so much fun hunting for some eggs.

Undoubtedly grandchildren fill a hole in your heart you did not know existed. For this reason I would recommend them to anyone.

Angry at the carcinoid syndrome diagnosis?

Life for everyone can be challenging. We all find the hum drum of daily living difficult at some point in our lives. When I was studying at university right out of high school gosh I thought life was difficult, when in fact it was actually pretty easy and straightforward. A lot of water has gone under the bridge since then my goodness. I’m married, have children, grandchildren, have enjoyed happy times, went through some sad experiences, proudly gained my PhD, and most definitely feel loved. I feel I was brought up fairly well and I have a glass full attitude to life and always try and look on the bright side. On meeting someone for the first time I treat them as a genius and work backwards and always have a “book and cover policy” – you never know what goes on behind closed doors or what is hiding behind that lovely smile. Although I am fairly level headed human and like the lion I am feel I can deal with anything, nothing prepared me for the day I went into the consultation room to be told I had carcinoid syndrome and it was incurable. Am I angry at the carcinoid syndrome diagnosis?

When I heard the words incurable, I first felt like I hit a brick wall. My stomach churned, after a few moments of the conversation with the consultant that day the remainIng words were not communicating with my ears and the journey home was a blur. But as time went on, getting medical treatments, ongoing management of my incurable condition. Surgery to get a gastrostomy feed. I decided to use my writing to promote awareness of Net cancer and carcinoid syndrome. I find writing helps me get through the day, it helps me relax, encourages me to take photographs, I read about other subjects. All in all, my mind gets flooded with new information and I totally enjoy being creative looking at life from a different angle. I found a way to deal with my illness. At first yes I felt rather upset and confused now I am not annoyed or angry at all. I believe getting a diagnosis has given me the coping mechanism; it has made me the person I am today. I have learnt what is important, especially things like keeping in touch with people, showing emotion and saying I love you.

Frogs, nest building and watching by the pond

Nearing the end of March and we have sprung forward for daylight saving. Lost an hour in our bed did that cause any upset. Gosh no, woke up to a beautiful sunny Sunday morning, the fresh dew glistening on the blades of grass as I drew back the curtains. Six year old granddaughter Alexandra was getting her breakfast then off to dance. She attends a dance class every Sunday which she absolutely loves. For later in the day when she was back at ours it was arranged that we would go out on an adventure. This would include a drive to a Forrest Park and then there would be Frogs, nest building and watching by the pond.

My sister Hazel and her Granddaughter Lily came to mine and picked up Alexandra and me. We travelled the scenic route from our home in Boggs Holdings, Pencaitland to Glentress, Peebles in The Scottish Borders. We headed along familiar roads, up the granite hills, driving up the hills straight through the golf course in Innerleithen. Looking out the window at sheep and their newly born lambs dancing around the bushes.

As we approached the Glentress Centre we drove through the well sign posted road to the upper car park. Got out the car. And went on an adventure. Tummy’s were rumbling, so first of all it was time to feed the girls at Glentress Peel Cafe – this was a super place to have something to eat. Catering for all, adults, children, decent enough vegetarian option and dog friendly. Beautiful outlook with a pond just outside.

The pond was a great attraction. Alexandra and Lily excitedly watched the frogs swimming. Eagerly took in all the pond had to offer including frog spawn, insects galore and many plants. I have to admit I was in my element sitting on the bank watching and taking photographs.

We took the steady incline back up to the car park. The girls ran around laughing and playing catch. Alexandra collected a fairly large stone, the girls went on in search for moss and they started nest building. The Ranger walked by and smiled. A few minutes later she came back, as we were sitting at the picnic table she presented the girls with activity sheets and coloured pencils. She said well done on their nest building.

As the girls sat and drew pictures and coloured in I took in the breathtaking view. Watched some mountain bikers. And looked out onto the hills with the Glentress Forest Lodges that are available to rent. With the thought that one weekend that would be a lovely stay for a night or three.

All in all what a great way to spend a few hours on a Sunday.

© Dr Elizabeth M Johnston-Young

Thanks ever so much for reading, I hope you enjoyed it.

Our beautiful box troll has turned six

How on earth did that happen? Where has time gone? My shining light, dependable caring compassionate granddaughter is a whole six years old. Wow! Alexandra is a crazy funny girl who makes me laugh and always has my back. Chattering away playing at ours, rattling the keys on the keyboard together with me as I write she is the most wonderful company. Since she turned 6 months old she has been coming to our place, for an afternoon, then an overnight, now its for whenever the need is there or she wants to come and stay. Our home is her home just as it should be for grandchildren. On her birthday she came to ours in the afternoon to blow out her candles on her birthday cake – let us celebrate because our beautiful box troll has turned six.

As a family we enjoy spending time together. At our home, it may involve cutting the grass on the lawn tractor. Going on holiday together, or to an event. Out for a walk with the dogs – my precious labradors. And most definitely celebrating a birthday like this one. It doesn’t have to be a big affair, just who matters sitting on the sofa singing happy birthday. It’s been a funny old time especially for a child of late with the pandemic, isolation and face masks, no birthday parties. However the most important thing has never left – love. Knowing that we are loved we can get through anything.

Our 6 year old sunshine girl Alexandra turned 6 – my I blinked my eye and she has grown……….

Today is rare disease day

It’s Monday morning like no other for most people. As I look out of my south facing cottage window I see grey clouds circling above the Lammermuir hills, on first glance its a bleak outlook. My telephone rings and anyone that knows me will guess that I am then preoccupied for at least an hour. Back to what I enjoy; I greedily set up my three apple devices with devoted labradors at my feet. As I lift my head to pick up a book I looked out of my ‘favourite view’ window. Was that a glimmer of sunshine trying to get through? As Bob Hope once said about Scotland it’s the only country he ever came to where he experienced 4 seasons not just in one day but in one hour. My yes, it was the clouds had lightened and the sun was beginning to show face. What looked like was going to be a rainy cold blustery day was turning out to be a fine day, perhaps not the best however one with promise and prospects, what more can you ask. Today is Monday 28th February 2022, today is Rare Disease Day.

I like to believe that the future for Rare Disease is parallel to today’s weather. One with good prospects and promise with a ray of sunshine to keep that frown upside down and remind us to smile each and everyday.

Living with a rare disease for most affects not only the person with the disease but those around them, whether they are family, friends or work colleagues. On getting a diagnosis, for many it is a life changing situation. Living with or getting diagnosed can be extremely hard to live with; physically, emotionally and financially. Some only get a very short life span. Others have many years of life and have to learn to manage. One big thing in common is many rare diseases are chronic. It isn’t always easy admitting you find life a struggle. However there are charities, hospital groups, clubs, various volunteer groups, etc and great deal of people affected benefit from support organisations; someone to talk to, somewhere that really understands, respite, etc, etc.

So what is a rare disease? 1 in 17 of us world wide will be affected by a rare disease at some time in our life. Carcinoid Syndrome is one of them. Huntington’s Disease,is a rare disease another is Cystic Fibrosis. The majority of rare diseases are chronic, progressive and genetic not curable. Only manageable to an extent. Living with a rare disease can feel very isolating and scary. Globally between 3.5% and 5.9% of the world population is affected with a rare disease. There are six thousand different diseases affecting 300 million people. In the UK, it is estimated that there are 3.5 million people affected by a rare disease.

Many patients with rare disease’s consult with more than one specialist. Often as many as five. Going to various outpatient clinics can take its toll not only on the patient but on the people around. The care at the hospital in the UK is free yes, however the patient has to get to the hospital for treatment, blood tests, scans, etc. Fuel in transport, or cost of public transport, the cost of eating out, etc etc. Then there is the physical cost to the patient. I was speaking with a consultant the other day and she spoke rather concerned that one of her young patients said she had 52 clinic appointments in the year. Equating to one per week. Yes she has an incurable rare disease, however she is also a student, desperate to pass her exams. The doctor sounded genuinely concerned for her patient; saying she thought this could affect the patient’s wellbeing on top of their condition.

What is Rare Disease Day? This is a world wide event for one day – always the last day in February. Celebrating Rare Disease’s. Promoting awareness. Sharing videos and experiences across the world. The aim of the day is to raise awareness, spread hope and solidarity and bring the worldwide community together. Hoping to improve access to treatment and medical representation for people and those affected with rare diseases.

It is go good to see so many people pull together for such an event globally. When these people are at home feeling isolated or trying to go out and are anxious they need to get their “big person” pants on. Life can be so difficult and cruel. It’s heartening to see so many people affected by rare diseases with glass half full attitudes. Medical staff fully behind them and organisations supporting in what needs done. Let’s hope for the day that we can get some treatment and you never know maybe even a cure for some of the diseases. However, for now let us manage the best we can.

What has made me smile today?

Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?

Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.

Buddy sitting at the front door

My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.

My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.

Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.

Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….

Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.

Has anything made you smile today?

A grand day out at Newhailes House

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.

Alexandra loves this tractor

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.



London, the city that keeps me alive more ways than one

My first memory of London; I am 11 years of age and in London with my Mum and Dad, we are passing a lamppost with ER printed on. Dad says “Biscuits look at that Elizabeth Reigns, you work hard sweetheart and you can be a boss too” My folks always gave me the encouragement and love needed to go forward in life. They helped me feel safe and secure. In 2012 I took the train with my hubby to London, this time not for a holiday but to see the expert Professor Caplin at The Royal Free. Despite needing diagnostic tests and treatment for incurable stage 4 neuroendocrine cancer and carcinoid syndrome Steve and I found time to explore new avenues. See museums, art galleries, The Tower, take in a show. One thing I am most certain of London, the city that keeps me alive more ways than one is my most favourite city.

Since 2012 I have been and continue to travel up and down the train tracks between Edinburgh and London. Had countless appointments with the Prof, attending clinics, grateful for but not particularly enjoying gallium pet scans, various treatments, glowing like the Readybrek kid, setting of alarms here there and everywhere, and many many blood samples on ice and some taken in special light conditions and immediately put in a Black bag. So tired that when I escape from the delightful cancer team we go to the West End show – We Will Rock You. A musical I have wanted to see for some time, the first half I sit, smile and sing along, the second I sleep right through, with the audience loving the show, singing at the top of their voices. The staff at the UCL Hospital and The Royal Free in London have been outstanding and for that I thank them from the bottom of my heart.

The last year we have had a year of corona, crisis and challenges. But let us not forget that the breakthrough of the vaccine has allowed us to start to come out of lockdown and find some sort of normality, try our best to get back to work, start socialising and enjoy life.

Steve and I in London with the Fatboy

July 2021 we decided not to go to London tandem but to go with my sister Hazel and her husband Alan. The boys rode the Harley-Davidson® motorcycles down and Hazel and I took the train first class from Edinburgh to London Kings Cross. I have always wanted to ride pillion over Tower Bridge. As well as having a fabulous 4 days Finally got my wish. Riding over Tower Bridge was as good as I expected, it was very busy, both lanes used, cyclists going as fast as us. Beautiful red double deckers travelling along with smiling faces looking over the Thames. Black cabs going no where fast. All of us sitting in the two lanes travelling along at 10 miles per hour, superb for me as a pillion taking in the view, people watching, loving the sights. Gathering my thoughts.

We crammed in what we wanted to do, Steve and I have done lots before including The Tower, The British Museum, various parks and lots more. This trip was to be relaxing, however there were a few places we wanted to tick the boxes. Namely Ace Cafe, The Bike Shed and Warrs Harley-Davidson®

Alan and Hazel

very popular arrival at Ace Cafe

Inside Ace Cafe

A selfie at Ace Cafe

Friday morning we gathered our bearings had a doddle around on foot, enjoyed some squares such as Russell and Tavistock Square, walked through St James’s Park, had lunch at The Hard Rock Cafe, Picaddily Circus, saw some of the sights on foot and then took a taxi back to the hotel looking forward to Friday night on the bikes.

We teamed up with our Sena Communication kits and rode the Harley’s up to Ace Cafe on Friday night. Friday night is bike night. Oh boy what a fabulous evening it was. There were car park Marshalls when we arrived, 20 minutes later I could see why. The entire car park was full of bikes. I’ve got to say anyone we spoke to was so welcoming and friendly. We first off hooked up with 4 young lads with Harleys. They don’t belong any Chapter, just friends riding their bikes. Went into the cafe for a cola and a scout around the shop. Came out and if possible it was busier than before. A familiar Harley fist bump came my way from Gerry; a member of The III Rivers Chapter, there were two members together, they welcomed us into their abode; great guys. Looking out onto the road there were motorcyclists doing wheelies up and down the road, burning tyres. Revving their engines, screaming up and down. So loud, vibrant and exciting. Gosh it makes a girl’s heart fair beat. One of the highlights of the evening was the calm Great Dane in the sidecar, sitting watching all going on taking in everything. What an unforgettable night.

Saturday we took the bikes for a tour of London, did what I’ve always wanted and rode over Tower Bridge, drove through Marble Arch, passed St James Park, Covent Garden. We followed our Harley-Davidson® noses to London’s Dealership Warrs. The Dealership is fabulous, as well as great bikes, superb range of accessories and clothing, they have a museum including Evel Kineval’s bike. Not to mention their very helpful outstanding staff; Holly and Edwardo. They sponsor the HOG Chapter Chelsea and Fulham. We met a lovely Chelsea and Fulham Chapter member at Warrs : Steve. He came with us for a tourist ride round London. Then the five of us went to the amazing Bike Shed, terrific experience from start to finish. As we arrived we were shown where to park, the great think is you can ride the bikes right in and ride passed tables as folks have a drink. Undercover safe parking, so secure you can leave your helmet on the seat of your bike. The staff warmly greeted us, we were an hour early, she asked if we could be fitted in would be like an earlier table – hell yes! We toddled the dozen steps to the shop, treated ourselves to a t shirt and some patches for our cuts, had a good look round, amazing bikes. There is a barber shop too.
Our table was ready and the food did not disappoint.

As always I enjoyed my time in the big city. Our final evening after packing and getting organised we ventured round to quiet Bloomsbury for a cocktail.

Steve, Hazel and Alan at London Eye

Steve and I in St James’s Park

Warrs

Fist Bump

It’s me Colin, I’ve got Huntington’s Disease. Are you listening?

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?

Colin

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.

Family Does Matter

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, Colin, their Dad Bill & Susan’s granddaughter

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.

Talking about nutrition

Over the last year I have been missing out in meeting up with chums and support network at net cancer support meetings organised by TAECT We have however had zoom meetings. Had a chance to chat and share a story or two over the internet. Our last meeting we had a guest specialist. The zoom meeting was different this time it was a question and answer session with dietician/nutritionist, Tara Whyand specialising in net cancer and carcinoid syndrome. On a Wednesday evening we were talking about nutrition

The zoom meeting was very well attended with a great variety of questions. It was informative and interesting. Living with a peg feed you may wonder why I want to take part in the discussion. Primarily because I miss my chums and want to see familiar faces. I physically miss seeing the friends I’ve made through the group, including Barbara, Margaret, the two Alistairs, Muriel & Eric, David & Isobel. It feels like a lifetime ago that we were all together in Pencaitland bowling club at the Tea Party I pulled together and the music night. Not only raising money for Scotland’s Net Cancer Charity but promoting awareness of the cancer and making new friends. Pre Covid we would meet up physically these meetings would be called Net Natter Meetings. Things have to change slightly for now and technology is fabulous letting us all join in and natter together.

It may seem strange that someone like myself with a gastrostomy tube attends a nutrition chat. However, I found it great. Tara mentioned one of the most bothersome symptom; diarrhea. We discussed this. Spoke about flushing. Also pellagra. We discussed taking supplements such as creon and vitamin B. All in all it was very informative and helpful. I’m sure everyone got a lot out of it.

As the covid vaccine has been rolled out and the restrictions are getting lifted I hope we will be meeting up soon and we can start to have regular Net Natter Meetings again.