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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.

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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.