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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.

 

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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.