Comfort to Kathmandu …

This blog was written by SHA Community Fundraiser Linda Winters on her experience of doing an overseas trek for charity. If you are thinking about doing an overseas trek why not join us on the Great Wall Discovery Challenge in 2019 or speak to us about organising your own.

As a fundraiser, I get to meet some incredible people, doing great things to change their community and improve lives.

One ordinary day at the office, that phone call happened. A fundraiser who also happened to be a family member and Trustee called to ask for some fundraising materials and tell us she is embarking on an overseas trek of the Himalayas later that year. I was immediately impressed by her ambitious spirit, but then I was pulled in…

I had intended at some stage in my life to do something adventurous for charity after bringing up my kids.  Now could be my chance, after I said this sounds amazing, Marie asked ‘why don’t you join us’?! Arrrgh, ‘okay I will,’ the quickest decision I had ever made – well nearly!

One telephone call later and I was booked up as a Volunteer Fundraiser to trek the Himalayas with Marie and her friend but it was the amazing causes that really did it.

Arriving in Kathmandu was an experience of a life time; it felt like we had landed on a movie set. Our guide for the trek collected us at the airport and took us to our hotel and ran through the next 14 days itinerary.  I sat there so excited with the realisation of what I had signed up to do.

The trek was a life changing experience; even partially conquering my fear of heights as I crossed the squinty, shaky bridge with missing planks.

The daily walks were surrounded by breath taking views of the snow topped Himalaya mountain range and meeting people from around the world heading in different directions. For 8 days we walked for about 5-7 hours per day, reaching Poonhill on day 8 at 3,210 metres. Regular stops for drinks and food were well organised. The local people were so friendly and at no time did I ever feel unsafe. Although we didn’t speak the same language we managed to communicate. Our accommodation was far from deluxe but gave us everything we needed, food, bed, and occasionally shower facilities.  It was humbling to see how other cultures live and in many ways, are less stressed with fewer material possessions.

We witnessed many villages that had been washed away by the monsoon with lots of lives lost and bodies never found under the rubble. Whole families destroyed in the landslides – it was sad to see. I did wonder to myself what services were available for people who had lost loved ones and how they coped. The communities really worked together and made the most of what was available to them and acceptance was maybe part of it.

Anyone taking on an overseas trip, be prepared for different emotions, everyone on your trip will feel the same and you can all support each other.  The biggest emotion will be the feeling of achievement and knowing that you did something for others. Planning for your trip is important and the charity you are supporting will be delighted to help with this.

I raised over £2,000 for Scottish Huntington’s Association and Diabetes UK Scotland. I would also say, if you are considering embarking on an overseas trip ‘do it’ go with no expectations and you will have an experience of a lifetime. Just think, doing something so life changing but helping others.  The feeling couldn’t really get any better!!!

Takeaways from the Carers Conference

Maureen Waddell is an HD carer who receives support from SHA. 2018 was her first time at the carers conference and here she shares her impression of the trip and her top takeaways.

 

I decided to attend the Carer’s conference for a number of reasons but primarily so that I could meet others in a similar situation and so that my husband would perhaps gain a better understanding of the complexities of the condition.  The benefits of attending the conference were so much more.

On the lead up to the carer’s conference, I started to worry about putting myself into a room full of strangers but I have to say that even from the moment I arrived at the hotel (stressed out with road accidents, not being able to find the car park), people were friendly and welcoming.

I decided to go to the mindfulness session as what was there to lose?  I was sitting on my own at first as I really didn’t know anyone else there.  It was not long before everyone was chatting and I felt that I could take part in the conversation.  The mindfulness session was definitely the start of the theme of the conference – as a carer it is important to look after ourselves too.  This is something that first time around I never did and have vowed to make sure that I take time for myself this time around.  I am not always successful at this but try to ensure that it happens.

Arriving for dinner with my husband, I was unsure where to sit as I really am not the best at socialising.  We decided to sit at a table on our own but were soon joined by people I had spoken to at the mindfulness session.  Before long our table was full.  Throughout the meal there was lots of conversation and definitely at this point I really felt so overwhelmed by that fact that we were not alone in this journey.  My husband sat listening to what everyone was saying.  These people we had just met could have been telling our story – they weren’t, they were telling their own.  This for me was amazing as my husband could understand that it was not just us who were going through this, that issues in our daily life were also being experienced by others, it was not just me who picks and chooses the arguments I have with not only a person with Huntington’s but also a teenager!  We went to bed that night a little lighter and slept the best I had done in a while.

The next day was a very busy day.  On arrival at the conference and true to form I saw that a few tables had people at them but decided to sit on my own (must learn to be more inclusive).  I found myself talking to people that I had never met (a big thing for me) and before long I found the table I was sitting at filling up.  We had lots of chatter throughout the morning and I found myself thinking what a great opportunity this was for me.  As I was listening to the chairperson of SHA I could feel myself relating to a lot of the things she spoke about – how her mum was both challenging and fun, how she knew of no limits to doing what she wanted.  I found myself laughing along and thinking – yeah I have been there and I am also now there again, having a teenager who really doesn’t do the word “can’t”.  She reinforced my thought that if my daughter wants to do things that at first seem impossible, I should look at all the options first before dismissing it.  We then had a neuropsychologist speak to us about how we should look after ourselves as we will be useless to others if we are not looked after – definite theme running.

When I looked at the programme of events the next speaker was not something that I had ever heard of – Laughter workshop.  I really didn’t have a clue and thought it was going to be something like a stand up comedy routine.  How wrong I was.  This woman started telling us about the theory behind laughter being the best medicine.  OMG her laugh was something else.  I don’t know whether I was laughing with her or at her but I definitely laughed.  I was also laughing at others in the room who were in various states of laughter.  One member even had to leave the room.  This is definitely where I lost it.  The lady then had us interacting with each other, laughing exercises.  I have never experienced anything like it.  I will never forget counting from 1 to 5 and back again laughing at certain numbers (I came home and showed both my daughter and my husband what we were doing – I don’t think they will ever see me as sane ever again).  We had to mix cocktails of laughter and also go around high fiving everyone whilst laughing.  Anyone walking in on us would have wondered what they walked in on.  At the end of the session the lady explained that every morning before getting up she lies in bed with her eyes closed and laughs out loud for 10 minutes.  We had to do this for 1 minute and that seemed like an eternity.  I can’t imagine lying in bed laughing out loud anytime soon but her session really did make me laugh.

The afternoon session saw various exhibits showing the importance of fire safety, equipment available that may be needed in the future, information about the carer’s forum.  I particularly found the section on the equipment available to help with HD patients’ speech particularly useful as with my first husband the frustration he felt at not being understood by others was a particularly hard thing to watch.  Technological advances in this area for me, I feel will be so good going forward.  Never complain about someone talking too much – I value all the times my daughter speaks to me (less so in the middle of the night!).

On summary, for me I am so glad I forced myself out of my comfort zone and went along to the carer’s conference.  I think at the end I was so busy chatting that I was one of the last to leave   I have taken away so many positives:

  1. Look after myself as well as my daughter
  2. Laughter really is the best medicine
  3. There is hope for the future
  4. You are not the only one doing this journey

Mostly the thing I have taken from the conference is the friendships I have gained.

I can’t wait for the next conference.  Roll on October for the family conference.

 

SHAYP Outsider

Note: This blog was written by SHA Fundraising Officer Gemma Powell. She writes about the opportunity she was given to go to SHAyp’s 8-12 residential trip and what it was like seeing the youth service from an outsider’s point of view.

“Close your eyes and put out your hand!”

“Why?”

“Because, just do it,”

“Ehhh … okay?”

I was on a bus surrounded by 13 sugar buzzed and excited children I’d never met before waiting to set off for this year’s SHAyp 8-12 residential camp. When I’d first been asked to help out, I’d enthusiastically agreed. In that moment, as this child makes a very suspicious request and the rest are looking at me like, “Who even are you,” I’ll admit I was worried. Scratch that in fact, I was terrified!

However, I arrived at camp with a pocket full of sweets (that’s why I was to close my eyes), and new ‘friends.’ My enthusiasm had returned with gusto. The camp itself only lasts three days (2 nights) but in a good way it felt both longer and shorter.

After a quick lunch the kids are straight into activities. I’m with the girls so it’s climbing challenges. There’s lots of laughter, weird animal noises (no animals around by the way!) and a constant stream of encouragement from those on the ground for those mid climb – nobody really did it on their own! This set the tone for the whole trip.
Already the different personalities are really apparent and it’s so interesting to watching how they approach everything differently from the activities, to meal times, to bed times. The trip passed in a whirlwind keeping busy with activities from water walkerz, survival skills, lazer quest and climbing. I’m not complaining, but I did feel like I was being picked on during lazer quest just a bit!

On the Tuesday morning the youth workers, Pete, Grant and David, led a group work session where the topic was Huntington’s disease (after all that cruel disease is the common denominator). I know what you’re thinking! How do you get a bunch of hyper kids to sit and listen to information on such a serious topic for a whole morning? And to tell the truth, they didn’t! There was a quiz, a video, lots of running about during seemingly daft activities but which all ultimately led to learning about HD. You really have to admire the creativity of a youth worker!

As a fundraiser when I write about the youth residential, I always say something like, “The camp is a chance for the children to meet other children from HD families, learn more about HD and of course have fun as well.” And it does that. But it also does so much more. I’ve never been so aware of the value of the youth service and the role they play in these young people’s lives. They are a trusted adult who they can confide in, the adult that is always looking out for them, that is always willing to listen, and that is also willing to have fun with them. I learned on this experience that no matter their home life and their own personalities kids are kids at the end of the day.

Now as a fundraiser I might say something like, “The camp is a chance for the kids to take part in various activities which help them grow their confidence and resilience, let go of stress and responsibility, and most importantly have fun! It’s a chance for the kids to be kids.”

 

Introducing the Glasgow & Clyde area team

The Glasgow & Clyde Area Team offer support, advice and information to individuals and families who live with Huntington’s Disease. We each have our own skills and experiences developed over time from our personal and professional backgrounds.

We would like to take this opportunity to introduce ourselves and for the purpose of this blog each member will be discussed by the other team members.

Last in first up….Claudia Lang.

Claudia joined the SHA in August 2017; she has extensive social work experience. She has settled well into the organisation in a short period of time and integrates well within the team. Claudia is very much into the process of meeting families and building on her role as HD Specialist. One of Claudia’s qualities is her ability to resist sweets, chocolates and biscuits unlike her colleagues. We value her calm and assuring presence which most certainly complements other characteristics within the team. Claudia’s skills extend to the kitchen. She has yet to prove herself as a chef to her team colleagues however we will welcome our invite for a nosh up!! That is if she gets time since she is also the proud keeper of hens – maybe we’ll get to sample the eggs with our meal! Welcome Claudia to the SHA and our Team.

Next up Jessica Muscatt.

Jess is from an Occupational Therapy background and moved from South England to join the SHA in January 2017. She is now very much acclimatised in her role as HD Specialist. Jess is the bubbly one in the team; we value her ambition to work to a high standard no matter what aspect of her role she is undertaking. Unfortunately her ability to master the ‘Glesga’ patter has a long way to go, but it will, however, occupy her time while she is waiting for summer!! Jess has a keen interest in a choir but thankfully she doesn’t expose her colleagues to her vocals in the office.
Gillian Blair joined the service in December 2015. Gillian comes from a nursing background with particular interest in Palliative Care. We value Gillian’s eclectic interests ranging from Game of Thrones, bling & fashion to World Wrestling Entertainment. Who would have thought that someone so feminine would be so physical and vocal when watching live wrestling. Gillian brings so much fun, laughter, drama and experience into every day and we never know what the day will bring. We do know however that her commitment to her work and all the people she comes into contact with is always of the highest level. Gillian leaves no stone unturned, if it can be done rest assured Gillian will do it.

Sally Woolvine joined the service in November 2013 as team manager and Senior HD Specialist. Sally comes from a Social Work and Palliative Care background and moved to Scotland from North West England and like Jessica has had to adapt to the Scottish “culture” as well as getting to grips with a new job which she has done extremely well. Sally’s best friend is her sat-nav! (she’s the first to admit she has no sense of direction on the roads). We all value how Sally leads and motivates the team. She is very generous with her time and support. She nurtures our strengths and gives us good advice at all times to assist us in supporting families. Sally has had a pivotal role in developing self-confidence and competence in the team. In January 2017 Sally became a super proud grandmother of the most beautiful baby boy, Loughlan. In her spare time Sally enjoys dangerous pursuits such as wild rides on the motorbike and diving in exotic locations.

Anita is our Admin Resource Worker. She joined the service in November 2000 when John Eden was just a fledgling! She has seen the SHA grow significantly over the years and has worked through many changes. She has seen the SHA go from strength to strength. Anita is the oracle of our local team and her ability to recall information is astonishing at times and worrying at others. Anita provides a sense of stability in the team. She is often faced with problems, emotions and a range of people’s day to day experiences from staff and families who contact the service yet she always manages to offer support, advice and a listening ear. Anita runs a tight ship in the office, the team are well aware of what they can or cannot get away with. But more importantly Anita nourishes our emotional wellbeing with her supply of comfort and treats. She is the queen of high teas and cocktails. It is very reassuring for the team to have Anita here as our anchor to help us manage our day to day activities and we would struggle without her.

We hope this provides a sense of who we are as individuals but more importantly that as a Team we recognise and value each other’s strengths and diversity. The Team share a mutual sense of respect and inspiration in the work we do with families. We value the privilege given to us by families to be involved in their lives and we are all looking forward to a hopeful future in the world of HD.

World Book Day: Watching their Dance

Therese Crutcher-Marin is the author of Watching Their Dance, a true to life novel about living in a family with Huntington’s disease. Therese has kindle offered to donate profits from this book sold in Scotland to Scottish Huntington’s Association (SHA). You can download the book here:  http://goo.gl/7LJ8fp

Also on sale with profits going to SHA this World Book day is ‘50 Percent’ the novel by our very own Chief Executive John Eden. You can download this here: http://goo.gl/R5hLiN

Some words from Therese,

I once read, “If you have one true friend in your lifetime, you are lucky”. With that said, I have been extraordinarily lucky! When I met John in 1976 and we became a couple, I quickly learned that being with him meant having his three older sisters in my life as well. The four siblings had had a difficult upbringing and were exceptionally close and I was thrilled when they welcomed me into their circle.

Like their brother, Lora, Marcia and Cindy were kind, positive, unselfish individuals and I became closer to them than I was to my own sisters. Through the years, I would count my blessings for the loving relationship the three sisters and I shared, as they became tried and true friends. These brave, gentle souls would inspire and teach me many lessons that would enrich my life.

When the sisters discovered the Marin family secret in 1978, their mother had Huntington’s disease, I struggled with my commitment to John, broke off our engagement and walked away from the four of them. But, after much soul searching, and deciding life was too short to walk away from the man I loved, John and his sisters welcomed me back with loving arms. John and I married in 1980.

Thus began our journey into the uncharted world of living AT RISK for Huntington’s disease. Though we didn’t speak about living in the shadow of Huntington’s, I acknowledged the possible consequences of my decision to marry into a family where four individuals had a 50/50 chance of inheriting the mutated Huntington gene.

In my mind, based on statistics, this inherited neurological disease with horrible odds, translated into the fact that probably two of the four Marin’s would eventually show symptoms of the disease. It was a coin toss that we all tried to ignore.

Through the years, John and I shared many good times with his sisters playing softball, having barbecues and parties, camping, taking vacations together, and just hanging out at Lora’s house in Citrus Heights.

Unfortunately, in 1984, Huntington’s began its attack on the Marin women. Lora was the first to fall prey to HD with severe, deep depression that led her to self-medicate with alcohol, and she was stolen from us at age 41 in 1989. Marcia was diagnosed in 1986 after a terrible car accident that seemed to trigger and exacerbate HD symptoms and she died at age 49 in 1999. Cindy, who we thought was free from the disease, began showing symptoms at age 41 and died at age 54 in 2008. Because of our close relationship, all three sisters lived with John and I at particularly hard times in their lives and I cared for Marcia for many years until I needed to return to fulltime work.

John and I miss them terribly and we wish we could have grown old together, celebrating birthdays and the holidays together and sitting on the deck at our cabin in Lake Tahoe sipping wine and watching the sunset. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

I have published a memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s” to accomplish several goals. My hope is that the book will heighten HD/JHD awareness, as it will be promoted around the world.

To learn more about Therese, please see her Author Website: www.theresecrutchermarin.com

HOPE.

HOPE. This is what we have all felt with the news from the Ionic trial. Living with HD as a family member is always having that black cloud just over the horizon, looming angrily to remind us all that time’s winged chariot is zooming along. But now we have light…not a lot, but it’s there. How good is that?

It reminds me of the famous expedition by Apsley Cherry-Garrard (what lovely name, Cherry to his mates) who was on the Antarctic expedition with Scott at the beginning of the 20th century. Off he went with 3 colleagues in the depths of the Antarctic winter – which means total dark 24/7, plus -50 degrees and a howling wind, to go and find out how the Emperor penguins reproduced. Nobody then knew.

They travelled for several days and then disaster struck. Their tent blew away. The men faced the fact that without it…they were doomed. It was too cold to survive. They couldn’t cook without its shelter or sleep or get out of the devastating wind and cold. They were miles from help and no way of summoning any. When HOPE… they found it snagged on an overhang.

I feel HD is a bit like that journey. Because it’s dark and cold and you know disaster looms. And now we have found the metaphorical tent in front of us. We can travel forward.

Cherry’s team didn’t know if they would get the precious egg. They didn’t know if they would survive to get back to Scott’s hut. But they knew they had a chance.

We all now have that precious chance to conquer this disease with its cruel progression. We can get back to the hut. And so we enjoyed Christmas. We all played games, and drank and ate enough for several expeditions. We went to the alternative Cinderella at the Citizens Theatre and laughed. We walked along the beach and took photos, just discernible in hoods and jackets. The teenage two argued and emptied the dishwasher ( it’s YOUR turn, it’s not, I did it last time…) and the dogs had a go at each other, and 3 of the adults did the Turkey Trot with Euan coming in at a fast time, and we ate Boxing Day Buffet and drank some more.

It was fun. And if January is now a bit dank and dreary and dry…spring is on its way. And at least we are not shuffling round in a circle with an egg on our feet- the fathers that is. Mums are off in the oceans swimming and fishing. When Cherry came back to London he took the hard won egg to the Natural History Museum where he had to wait in the corridor for some time, and was treated with less than courtesy. Poor guy!

We have our egg, and it needs nourished, and money, clever clever people, and HD+ve people who are brave enough to go on the trial. We will get there I am sure of it…and it’s so good to have that hope.

 

Barbie Short, January 2018

Stronger Together

Stronger Together was the theme for this year’s European Huntington’s Disease Association conference held in Sofia, which I was fortunate to attend in September.

Over the course of the three days I met the most dedicated, bravest, happiest, people from 28 countries across Europe and the world. People had travelled thousands of miles eager to hear about the latest research, the approaches that are being used elsewhere, to meet and make new friends and to stand together to fight this debilitating condition that knows no social, race, or age barrier.

Snapshot of Bulgaria

Bulgaria – as the host country – shared their progress since 2014 despite a number of local challenges. Typically, a lack of public and professional awareness has delayed diagnosis, or worse still, resulted in wrong diagnosis. Also, families living in remote hot spots, in isolation, with fear of stigma are faced with a distinct lack of good practice. There is progress, but obstacles such as no psychiatric input, no palliative care, no specialist care and a chronic lack of health care outside the capital city mean there is still a long way to go.

HD research and the future

For me, the most inspiring session was lead by Sarah Tabrizi, Professor of Clinical Neurology, from London, who ‘stole the show’.  Her presence, enthusiasm and passion were screaming for all to hear. She has been working in HD research for 21 years and her confidence in finding a treatment for HD was the hope we all needed to hear. She was adamant that HD will be treated in the same way as diseases like cancer and HIV are treated now and that is will not be the terminal disease we now see. She enthused that current treatment undergoing clinical trials give very real hope for the future generations living with HD.

Gene Lowering

The real hope is in what some call ‘gene silencing’ but Sarah referred to as ‘gene lowering’ therapies. The key being early treatment, that is to treat before it starts. The delivery method of choice currently is to inject directly into the spinal fluid, ventricles or brain tissue. This treatment is not reversible so is higher risk. This approach has now reached the second phase of human trials and shows to be very hopeful at stopping the disease before the symptoms cause disability for the person.

IONIC Trial

This exciting development of a single strand of chemically altered DNA which reduces the HTT protein level is the first clinical therapy supporting the attack of mutant protein. The drug is injected into spinal fluid but the target is the brain. Forty six patients with early HD from Canada and Europe are currently taking part in human trials.  There is an ‘open label’ extension for participants which means it is progressing well in terms of safety.

Gene editing – is also raising real hope.  A scientist discovered by accident that bacteria could destroy DNA. For a person with increased repeats related to HD this means finding the mistake, deleting the mistake and correcting the number or repeats. This is still in the very early stages.

On reflection…

The conference was overwhelmingly a positive experience for me. The unique opportunity to be emerged for three days amongst Europe’s eminent ‘leading lights’ on HD and HD families from across the globe was both exhilarating and exhausting!  The combined passion, enthusiasm and dedication of the speakers and the delegates was evidence if it was ever needed that ‘Stronger Together’ is the only way forward.

Without doubt I would encourage others to attend this annual conference – intellectually and socially there is so much to be gained from meeting like-minded people.  I came home genuinely optimistic, energised and more hopeful about the future of HD. 

Annette Brown
Senior HD Specialist
SHA Lothian

A Reason

Note: This blog piece has been submitted Margaret Black. Margaret is an HD family member and is sharing her experience finding out about having HD in her family. Thank you to Margaret for sharing this with us.

A Reason, A Season Or A Lifetime

I can’t remember who told me, but someone once said that things, or people, come into your life for a reason, a season, or a lifetime. I wasn’t exactly sure what they meant at the time, but it all started to make sense many years later.

My earliest memory was around age three, at my Granny’s house, Teviot, where I spent most of my childhood. As a child, I completely accepted that Granny Maisie was the dominant character, running the house, maintaining a large garden, and being the “go-to” figure for all family decisions. She was the much-loved matriarch of the family. My Grandpa was clearly in poor health, I only ever remember him sitting in his armchair; twisted and fidgety. He seemed uncomfortable, with a dark kind of sadness across his face, which lifted when he saw me. He would make an effort to smile. In the afternoons, Granny would read to me from my comic, the Twinkle. My favourite story was about Nurse Nancy and Dr Jingle. Granny suggested that I could be Nurse Nancy to Grandpa, and therefore I started helping him with little everyday tasks. For the next three years, I was proud to be the person helping with my Grandpa’s food tray, bib and feeding cup, in my role as Nurse Nancy. In March 1973, my Grandpa passed away, five days before my seventh birthday, leaving my Granny and his four children devastated. None of the family were aware that Granny was also harbouring a family secret, which would emerge many years later and effectively ruin the lives of every one of Grandpa’s children and grandchildren.

In October 1996, at age thirty, I finally learned the family secret. I had been born into a “Huntington’s family”. At the time, my mother described it as ‘Huntington’s chorea’, a name which changed over the years to Huntington’s disease (HD). I personally think the chorea part of the name is more appropriate, representing the jerking movements of the patient. Disease suggests to me something that you catch; involving tablets, medication and a possible cure. I soon realised that there is no cure for Huntington’s disease; treatment is limited, varied, inconsistent and often controversial- making diagnosis a bitter pill to swallow.

There is no rhyme or reason as to why Huntington’s strikes, and continues to strike generation after generation. Each child with an affected parent lives with a 50:50 risk of developing the disease.

To me it felt like a death sentence, which hung over me and clouded my judgement for the next seventeen years.

A chance meeting, an inquisitive mind, a desire to learn more and to help others in my family brought me into contact with a Huntington’s specialist. Over a period of years, my “season”, a special rapport was built up, and conversations took place that only she and I totally understood.

The testing process, uncertainty, positive results, negative results, impact on future generations, guilt, frustration, tears…

A life sentence.

 

22 years and counting…

Note: This blog piece has been submitted by Jean Davis, an SHA employee. Jean is one of those working really hard behind the scenes and an absolute credit to the organisation. here she talks about her experience working with the HD community.

22 years and counting…

How proud am I to work for an organisation which is so hardworking and dedicated to their cause. That’s probably why I’ve stayed with the SHA for over 22 years!  My background has always been in administration, working for a variety of firms throughout the country e.g. Metal Box Co in London, Tarmac Construction in Devon etc etc.  I was fortunate to be offered an admin post with the SHA shortly after I moved to Scotland in 1994, when the Fife service was just commencing.  The HD clients and families I have met through the years have been an inspiration to me.  I’m sure these contacts have made me more understanding and aware of disabilities in general and the care needed to support those affected.  Raising awareness of HD is vital and I know staff are working hard in this direction.

I have today typed up the casenotes for a client in Fife who is in mid-late stage HD. He is divorced with three children but has no contact with any of them.  His only sister, who also has HD but used to visit, has now been taken into care and is no longer seeing her brother.  He also has no friends.  How sad that this relatively still young man has no family or friends in his life to support him through his deteriorating symptoms.  Withdrawal from being involved with someone with HD is unfortunately a common occurrence and  although I very much appreciate how hard it is seeing someone you care about changing both physically and mentally, it must be devastating for that person to have no-one from their past to be there for them.

I remember this same client from about 20 years ago when he turned up one day in our office. He was at that time being supported by his wife.  Now he has no-one although professional carers, organised by his HD Specialist, assist him every day.  These carers are great with him, they take him out socially and it is mainly through their assistance that he has not been taken into care. His HD Specialist also sees him very regularly to ensure he maintains the best quality of life possible.  Through her guidance and assistance, he now has a lovely flat, he is kept clean and well nourished, his finances are in good order and generally he seems happy.  It is also hoped that visits to/from his sister in care can be arranged.  It just made me wonder how much more empty and lonely his life would have been without the SHA.

 

Thinking about holidays…

Note: This blog piece has been submitted by Barbie Short, an HD family member. Here she gives her thoughts on how difficult it is to live with HD but has a really hopeful message. From March 2017.

Thinking about holidays today.

Somewhere in Scotland, where, of course, the weather will be good. I need to get something in the diary. My son, Euan, is off to Kylesku  with his family for April. His wife Isabel carries the gene with her , always and wherever she goes. I think that’s something about Huntington’s that is sometimes missed. You can’t get away from it. Well, you can’t get away from liver disease , or cancer either but there is treatment, there is hope, you can manage the symptoms. Its the dire sinking feeling of living with the Sword of Damocles above your head that is so difficult.

We all carry it of course to a greater or lesser extent. The sword, I mean. All the family. Except the children. Its hard , isn’t it, telling children. Mum has a gene that will incapacitate and kill her. How do you dress that one up? And to top it all, you may have it too……

Well there is help and support ,but little softens life for HD families.  And for my friends, who will  chatter on about their families, then lower their voices and say,

“How is Isabel?”

Because now they know. They never used to. It was just us, because that was what Isabel wanted. Not to be seen as a ‘person with HD’ but as the lovely vibrant warm intelligent person that she is. But it’s in the open now. I have to explain it. And I have got used to the appalling shock they feel when I say , and I know then that living with it means I am past that. It’s incorporated, it’s part of us.

Life means we go on.

We cope. Sometimes Isabel has stumbled, or forgotten something, and then she worries. I say to her, if I do that I think it’s Alzheimer’s creeping on, you think it’s HD; actually its just us tripping over the dog’s toy or putting our keys somewhere funny. Life is to be lived.

So we do. We go on holiday , we laugh, we cry. Everyone has something in their life, and at any minute the precious life we have can be snatched away. So let’s get on with it , enjoy the sunshine, go off to Kylesku. And if Andrew age 14 forgets everything but his tablet, and there is no WiFi, and Marie age 12 moans about not having 6 pairs of shoes, and Isabel forgets her shades and Euan leaves his credit card behind……and the dog is sick half way…….. Things don’t matter but love does. It’ll be fun.

Additional information

For families living with HD going on holiday can prove difficult. Read more about the Short Breaks Fund provided by Scottish Huntington’s Association.

Getting travel insurance is a common problem. There are companies that specialise in advising people with pre-existing medical conditions that can be found with a quick google search. One example is Just Travel Company who will give you an extra 8% discount on your premium when you quote the code HDSCOT8.