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.

London Marathon 2017

My name is Steven Henderson. I am 33 years old, and was born and raised in Aberdeen. I live with my wife Angie, and 2 children Zach, age 7 and Abbie who is 2 years old. We also have our dog Buddy who is a 10 year old Golden Retriever (Or as my wife says our 1st born!).

I began running at the start of January 2016 in an attempt to lose weight after a comment my grandmother made, as only grandmothers can, and signed up for various events to keep me focused on a target and prevent me from just stopping. After watching many people take part in the London Marathon in April 2016, it gave me the urge to complete the marathon myself and do it in aid of charity instead of running it just for myself. The moment I saw SHA were a charity linked to the London Marathon, I knew I wanted to run on behalf of them and was excited after finding I had been successful in gaining a place on behalf of SHA.

Having run 10km events before and the odd half Marathon, nothing prepared me for anything like the London Marathon and occasionally, I did wonder what I had let myself in for.

I had it all set out in principle, train and run a 10km, then move onto a ½ marathon and then prepare for the London Marathon at least that was the plan.

A few months prior to London 3 things were apparent

  1. Donations were not looking great and a big push was required
  2. My distances in training were falling way short of I would have liked (massively!!)
  3. I was starting to wonder what on earth I was doing!

It’s at this point I should say that if it wasn’t for Angie, I would have been sitting on my sofa watching TV and training would have been clean out the door

The weekend of the marathon will always stick in my mind. On the Saturday morning I remember sitting in Aberdeen airport waiting for the flight to London, more nervous than I had been in the lead up to the birth of both my kids and our wedding! Arriving in London I headed straight to the Excel Arena for registration to see what could only be described as sea of people and the amount of walking I did on the day before slightly worried me.

On the evening before the marathon, I met all the runners taking part on behalf of Huntington’s Association from all corners of the UK. It was a nice touch which gave me more of an incentive to run. It was also nice to be able to share each other’s stories with one another.

Race Day was here and an early start for breakfast before heading off to a very busy tube to get to Greenwich. This was followed by a “short” walk through the park to wait at the start line for the beginning of the race. With runners as far as the eye could see, it was a spectacle to see, albeit a very nervous one!

The race was started promptly at 10am and by 10 miles in it was looking good and my time also looking not too bad. However by mile 19 the wall started to appear and boy it hit hard. I was pouring water all over my head, arms and legs as though they had caught fire and ran through as many showers as I could just to keep me cool in the London heat but pushed hard to try and meet my 3hr 30 target.

The last few miles were what can only be described as a struggle and one of the hardest things I’ve ever done. With sheer determination, the sight of Angie along with several thousand people cheering me on and handing out Jelly Babies, the end was in sight and the sight of the Mall brought on the emotion of why and who I was doing this for and as I crossed the line the feeling of relief and accomplishment that I had completed the marathon hit me.

My lasting memory of London will always be; the amount of people that took part, the banners that people held up to encourage their friends and family, the amount of first aiders standing with Vaseline in their hands and the sense of achievement of taking part, finishing the Marathon and raising money for such a great charity.

A Scientist Working on Huntington’s Disease

Note: Dr Emma Yhnell is a scientist working in the Neuroscience and Mental Health Research Institute at Cardiff University, Wales, UK. Here she gives us her perspective on what it is like to be a scientist working on Huntington’s disease.

How I go into science. 

I really loved science at school, I have to admit that physics wasn’t exactly my favourite, but I loved Biology and Chemistry. I had great teachers who encouraged me to ask lots of questions and learn loads about science. When it came to deciding what to do at the end of my time at school, I knew that I wanted to go to university. But when it came to deciding on which university it was hard, they all seemed to offer similar things, but I combined my love of Biology and Chemistry and decided that I would study Biochemistry at Cardiff University.

Before I knew it, 3 years had absolutely flown by, and it was time to decide what I wanted to do at the end of my undergraduate degree. I had a great time during my degree and I loved the city that I had spent 3 years in, so I wanted to stay. I was looking at applying for PhD’s, higher degrees that focus on a specialist subject. Deciding that I was going to start applying for PhD’s was no small step, it was a tough, competitive process and hard work. I went for an interview in the Brain Repair Group, a research lab that looked at diseases of the brain such as Huntington’s disease and Parkinson’s disease and that were researching therapies to try and treat these diseases. I love the atmosphere there and was accepted on to a 3 year PhD scheme funded by the Medical Research Council (MRC) to research a mouse model of Huntington’s disease.

Why I chose Huntington’s disease

I have some experience of Huntington’s disease through family connections, there is also an great sense of community among Huntington’s disease researchers and family members.  But one of the main reasons I chose to study Huntington’s disease was that it is a really interesting disease. It has been previously referred to as ‘the most curable incurable brain disease’, this is because the faulty gene that causes the disease was discovered in 1993. It is incredibly rare for a single gene to be shown to cause a disease. This makes Huntington’s disease a special and unique disease and particularly good for research. During my PhD I learnt a huge amount, and I was also invited into the Huntington’s disease patient clinic to meet people and families affected. This was a real turning point for me and after this I applied for more research funding to look at computer game brain training for people affected by Huntington’s disease. I started off in the lab looking at Huntington’s disease and now I spend my time doing clinical research in the patient clinic.

What does a scientist do every day?

So, what does a scientist do every day? Well, in my current job as a Health and Care Research Wales Fellow I am looking at brain training computer games to see if they can help people affected by Huntington’s disease. This means I have a lot of interaction with patients and families. I am also really lucky as I get to travel and present my research. I love my work as a research scientist. The thing I really love about my job is that I get to talk to people about science and help people and families affected by Huntington’s disease.

Emma

@EmmaYhnell

 

Guest blogger: Pablo Serski ‘Incredible Hulk and incredible feat of charity’

Guest blogger: Trish Dainton ‘The Dental and The Rental’

Note from Trish: The following is adapted from a blog I wrote over several months between 2006 and 2008 ‘Pimp My Blog’.

As a carer to my late husband – Steve aka ‘Hubs’ – I used my blogs to record events and information, along with helping to off-load about our struggles. It was important I try to also recognise the good stuff, and that Steve’s illness was not his fault. We were all in it together! Writing a blog was a great form of therapy which I would recommend to anyone.

Trish Dainton @TDainton

The Dental and The Rental 

Tuesday 27th February 2007

Had to wake Hubs early/even earlier again today to be ready for the Dentist. Our transport turned up on time for once and we shared with a beautiful Down’s Syndrome lady who was a complete sweetie but had the cough of a 60 a day smoker. I felt like telling Hubs NOW THAT’S WHAT I CALL A COUGH! His version of a cough in need of waking me up at 2 a.m. is a mild throat clearing one, bless him.

Our fantastic medical student at the Dental Hospital had obviously shown all the signs of being one of the NHS’s best and most caring professionals. She obviously went above someone else’s’ head on our behalf and told them she felt strongly as I did that it is kinder to give Hubs his treatment under a general anaesthetic. As a result she said she could put us up for referral for sedation (he would be numbed but still awake) or General (her/my preference).

It was music to my ears as Hubs had already been groaning about the visit. It was tiring for him anyway and the teeth scraping was obviously painful for him and upsetting for all of us. However… When it came to her asking us at the end of the treatment to let her know if we wanted to take her up on her proposal Hubs played a blinder!

He simply said “I thought we were going to talk about it when we get home?” That wasn’t a “No” but it wasn’t a “Yes” either. Therefore no action could be taken by the Student. What it did prove is how, HD or no HD, Hubs is a clever and cunning man. He must have known I couldn’t give her an answer without his own debate with me. Stalemate.

Wednesday 28th February 2007

I had been hoping for a morning Appointment to get the formalities of the new flat done but due to unforeseen circumstances I ended up being asked to meet the Housing Assoc Rep at 3 p.m. The worst time possible but I couldn’t say no unless we lost the flat or had a big delay.

To summarise:

10 a.m. Hubs wakes. I explain I have to leave at 2 p.m. and would he like to wake early to get his breakfast etc done and come with me? “NO!” was his reply.

I type out full instructions; leave breakfast and juice in the fridge and do everything possible on earth to accommodate Hubs being apart from me for two hours.

1 p.m. he wakes… I explain I am due to leave at 2 p.m. and he says he wants to go back to bed; understands not to touch the kettle etc; and wants to be woken at 3 p.m. to read the paper.

3 p.m. – I call him up to wake him.

By 5 minutes past 3 (when I am now talking to Housing Assoc man) Hubs calls on my mobile to ask where his porridge is? I explain again I didn’t leave any as it would have been cold so it’s just the dish of stuff in the fridge at this stage. I also remind him not to touch the kettle.

In the next hour I get three more calls with questions from where is the lid of the milk (the new one he has decided to open thus proving he is making himself a tea despite my telling him to WAIT) to where are the loo rolls- even though I have left plenty and told him to wait till I get home before attempting to go to the loo if possible lest he falls! I return home to a disgruntled Hubs and milk everywhere. There are signs of him having made a tea with no accidents. Oh for the days I would get home from work and Hubs asked me if I would like a cuppa?  Now when I arrived home his first question was “Is my bum clean?”

©Trish Dainton