From as long as I can remember my parents encouraged me to listen to others and always speak up to others and tell the truth no matter what has gone on. I have always taken this with me, passed this on to my children; said to them whatever has happened just tell me and we will deal with it. This has I believe gave us a trustworthy bond between parent and child no matter what their age. My lads are in their 30’s and we still talk, I trust them and they trust me. Growing up I knew I could go to my parents and talk to them about anything and everything, I always knew whatever I said to my Mum or Dad it would go no further. They were full of fabulous advice, helped me transform from teenager to adult. Who do I talk to now? I chat to a couple of friends about everything and anything, one in particular we know we can discuss ‘our laundry’ with each other. However, my ultimate bounce off and discussion partner is my hubby Steve, we are partners in life, super friends, chat about all and sundry and most importantly there is that Element of Trust
So what is trust? I believe it is when someone can be relied on. Their honesty and integrity shines through. If I trust someone it means I believe they are who they say they are and they will always do what they say they will do. Most importantly what comes out of their mouth or from their written hand is the truth. They will not lie to me.
I pride myself in having a fabulous circle of friends, a beautiful family and most certainly a very close knit few that I value and trust with my life. Recently I have been disappointed with acquaintances. When I got told a lie from someone I actually never thought I would. That kick in the shins fairly knocked the stuffing out of me for several reasons………
There have been people in my life recently that have been irritable, non trustworthy, tit tattling to other people. These reprobates aren’t worth worrying about.
Building up trust: has not always made me popular but I’m a believer in say what you mean and mean what you say. Give people the benefit of the doubt. Remember the role of respect.
I have counted my blessings. Enjoyed being with friends and family. And relished that special time with my most loyal trustworthy labradors, Buddy and Bella; now they could teach a few humans a thing or two.
So for me, trust is important, especially in building up relationships. For those who know me, I’m a very happy honest human who enjoys life. Every day is precious and I am continuing to enjoy life with my beautiful family. On Saturday Steve took time from his busy business we spent a precious day together, Steve did a wonderful job gardening, Bella watching every step. Sunday we both took an amazing trip on Fattie our Harley-Davidson® to Moffat, St Mary’s Loch and Peebles with some friends. Sunday; beautiful scenery, lovely weather and great friends; a fabulous recipe for an amazing day out. Just the tonic to end the week.
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.
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.
Since the day my consultant told me I had to give up driving my online shopping has increased tenfold. I purchase my weekly grocery shop online. The Sainsbury’s van could drive its way to our cottage on its own I’m sure. I have to admit I purchase nearly everything online, and from everywhere. I was so happy when I found out I was able to shop and give to charity without costing me a penny.
As most of my regular blog readers know I regularly attend Net natter support meetings with The Ann Edgar Charitable Trust. (TAECT) Scotland’s Neuroendocrine Cancer Charity. They are an invaluable support network as well as offer information days and zoom meetings. I got an email from TAECT letting me know that they had registered with Amazon Smile and Give as You Live.
So me being me, an avid online shopper and a huge supporter of TAECT started going onto Amazon Smile rather than my regular Amazon. I shop on Amazon frequently. I am an Amazon Prime customer and purchase several items per week. So thought it best to support the Charity. All I do is make a purchase as normal, pay the price like usual. The charity gets 0.5% of the sales every time I shop at no cost to me.
I then decided to register for Give a you live, its so simple. Register for free, and then shop online to different retailers. The retailer donates a percentage of sales to the charity. Its that simple. Companies that participate include, John Lewis, B & Q, Dunelm, H & M, Argos, Marks & Spencers, Pets at Home, Screwfix, Ebay, plus many many more. In only one week, I have shopped in John Lewis, Dunelm and Boden. £7.71 has been donated to charity without costing me any extra money.
Both schemes are a wonderful way to donate money to charity, there are a great deal of charities to choose from and many on your doorstep. All without leaving your arm chair and only for the cost of. the goods. Its a win win situation.
You can have a look at smile Amazon here. And Give as you live here. I’m sure you will agree they are both fabulous ways to help the income of charities.
So the next time you are going on Amazon to shop, instead of the regular Amazon, go on Amazon Smile. Register a charity and donate 0.5% every time you shop. If you are buying a gift for someone, treating yourself to something, getting a much needed product for the house, go through give as you live and donate a percentage to charity. It really is that simple and no extra cost to you at all.
As I have grown older I have came to realise that there aren’t many guarantees in life. The only certainties in life are birth,death and change. We are born, changes take place and we die. To make things more pleasant all round and something we take for granted in the United Kingdom is that we will always have somewhere to go when we are sick. Get taken care of free of charge and when the inevitable happens are granted A comfortable place to die.
When a person is faced with a terminal illness, at some point thoughts come racing in to the mind where do you want to spend the last days. People’s answers are very personal ones. For some being at home and spending every last possible moment being cared for in the family home is their wish. Others prefer to be cared for in a hospice or hospital environment. Either way, the experience I have witnessed personally the care given has always been outstanding. The nursing staff making sure in the last weeks, days and right down to moments comfort is paramount.
There is no getting away from it making a choice where you want to end your days is far from easy. There is an awful lot to consider. However even when all the pros and cons are weighed up and it’s been decided home, hospital or hospice sometimes it just doesn’t go as smooth as you would expect.
We may choose to stay at home and be cared for by your loved ones and supported by district nursing team. Most of the time it goes well and you get your wish and you can stay at home. The district nurse team and Marie curie nurses that cared for my Father in his home gave him a caring, dignified last few days. For that we cannot thank the wonderful medical team enough and will forever be in their debt. Home nursing teams work very hard looking after the patient, ordering drugs, equipment, supplies, communicating with other health professionals. We are lucky to have such good staff working on the NHS, providing us with with amazing service. They are dedicated, take care of the patient and make sure the family are coping too. At present I have the most amazing team of District Nurses that come in to my home and give me injections, service my stoma/gastrostomy tube, change dressings, etc. They also look out for my nearest and dearest.
However for some there can be a time that everything is all set up and there is a spanner in the works and you need shipped off to hospital and you no longer get the home care you so wished for. In a snap decision one of most difficult decisions of your life has been literally taken out of your hands. What we have to remember is things happen for a reason and getting sent into hospital is most likely with best intentions.
When we make a decision to end our days in a hospice it’s a choice that certainly does not come lightly. Whilst you get fabulous care and are in a safe and secure environment, it’s not home. Although hospices have a much less clinical feel than hospitals you can’t quite move your pet in. The biggest problem at the moment is the waiting time to go in. Main reason being there just isn’t enough palliative care beds to go around. It’s heartbreaking but the practicality is that we are actually waiting on someone passing away to then offer a bed. In the UK we get used to getting our health care and this includes all our cancer treatments free of charge. All us human beans in UK take our health care for granted; go to the doctor and don’t think about the cost. Many people think more about putting money away vet bills for our pets or saving for a holiday than donating to a charity.
Hospices, such as Marie Cure and St Columba’s, home care nursing from Marie Curie and Macmillian are not NHS or big private hospitals, they are self financing. They are charities. Rely on donations and fundraising. They offer their services free to patients who need them, at times it may be respite care where a patient goes in for a few days then goes home, or the nurses go to a patient’s home and takes care of them; gives the family help with washing the patient, changing pyjamas, changing sheets, etc, and patient staying in hospice for life end care.
On thinking about the charities, I believe we need to try and chip in a tad if we can. Next time you are eating that McDonald’s and you are about to have a Mcflurry with it; what’s the cost for the ice cream? Couple of quid? Perhaps think about matching the couple of pounds in a donation, I definitely will.
I’m in my mid fifties and have known people very dear to me that have died by their own choosing at home, in hospital and in a hospice. All very well cared for, and I can see the benefits and down sides of all. For the person that is going to meet his Maker and for those that are left behind. Me? If I mange to get my wish I will not be at home and I will not be a burden on anyone. Let’s hope this works out.