I mentioned in my last blog entry One dose of Tweetment or two?  how I ventured out into the big bad world recently and networked with a number of local residents at a ‘TweetUp’.

 One of the people I met at the ‘TweetUp’ suggested I might be considered for a slot on the local radio station (Meridian) to speak about Huntington’s disease (HD).

 The tweet exchange was copied to Robert Gray and the outcome was I somehow managed to wangle an interview on his show. The date set was Saturday 8th June to coincide with the build up to Huntington’s disease Awareness Week and Carers Week. Both campaigns being held 10th – 16th June.

 It was the first time I have been interviewed on the radio (and probably last I dare say) and it was live! I was originally expecting a 10-15 minutes slot but Robert kindly offered me a lift to the Studio and back home again and asked me to stay the whole two hours. We were talking being two hours in the Studio itself and our interacting. It was really kind of him and he was, after all, taking a bit of a gamble there.

 Regarding the lift…I should add at this juncture Robert lives just a few hundred yards from me at his B&B called Number 16. Another example of Steve working from above and hooking me up with a local celebrity and DJ no doubt. 

Being live, I was hoping I wouldn’t get too emotional if talking about Steve and my own circumstances. It was important to get across Steve and I were not your average HD couple struggling to identify the monster taking over Steve with no support whatsoever.

I knew of HD being possible from the outset. We didn’t have kids and we had the opportunity to be selfish and live life to the max while we still could. We saved for the rainy day and still had enough left to splash in the puddles at the end of the shades of black Rainbow.

I was blessed to have such a tolerant and laid back partner and friend in Steve. He gave me the confidence to carry on by drawing on my physical or emotional strength with just one look from those sapphire blue eyes, be they in plea for help or appreciation.

It’s very easy to write those words but hard to say out loud without crying as, not a day goes by when I wish I had told Steve these things to his face before he died.

Then again… Steve wasn’t one for being soppy and would have looked at me confused and wondering what was wrong bless him. Whilst I can’t say I talked much about those elements of our relationship in the interview, I can say I am sure between myself and Robert we tried to make it clear it was hard for both people with Huntington’s and carers in general.

The two hours went by VERY quickly and we got the words ‘Huntington’s disease’ out there many times and spoke about the caring commitment for that and other diseases. I had taken along lots of notes and web links etc to try ensuring I got across the messages I wanted to in four areas:

 1)    Huntington’s disease Awareness Week

2)    Carers Week

3)    My Book

4)    My Petition

Robert and I had been able to have a brief meeting the day before to chat about what I hoped to get out of the interview, and also for him to have more background information. End of day… Robert would have to build the interview into the show accommodating his regular features such as The A-Z of Greenwich and taking stock of listener interaction via media such as Twitter.

 The feedback we were getting seemed on the positive side which was a relief, especially when you consider the Station is based within Queen Elizabeth Hospital. We could both have been treading eggshells openly talking about Huntington’s. Let’s not forget some of those listening may have pricked up their ears when hearing details mentioned as it was the local hospital where Steve had a number of medical staff looking after his welfare and ultimately mine too. As many of us in HD Land know, HD awareness doesn’t start or stop with the medical professionals and I was certainly no shrinking violet when it came to educating the educated professionals ; – )

 Was I nervous going in and doing live radio?

The answer to that question has to be “No”. That probably sounds bigheaded but let me explain…

Before I became a full time carer to Steve I was in various jobs and in training where I needed to give presentations. I had learnt there were tactics such as making colour coded notes and trying to have a defined idea of what you are trying to get across. I lost count of the times I heard the old saying “To fail to prepare is to prepare to fail”.

Aside from the practical aspects, I was already put at ease by Robert and felt I was among friends from the outset. From the very first tweet exchange it felt like Steve was with us and approved. Robert had known me and Steve by sight from living so locally and two other things told me Steve wanted me to be doing the Show and feel at ease.

Firstly, when I walked into the Studio and sat down the  large clock on the wall caught my eye. Anyone who has read ‘Time to Change’ in Curse in verse and Much More Worse will know Steve’s OCD was mainly based around time.

There on the wall was the exact same clock we have in the bedroom! One of the ones I would need to strategically move from room to room and even take away on holidays with us so Steve had his clock and familiarity. I felt I was in my own home with familiar things around us. The same comfort it would bring him.

Secondly, I was always worried one of the records Robert would play might be one with a strong emotional attachment and reduce me to tears. Music has that effect on people and I am no exception.

The only record that started to invade my psyche was Tracy Chapman’s Fast Car. That was one of those records that Steve and I both loved and bought together. There were many times I wish we both could have got in a car and driven away from our problems. And yes… I am talking collectively and in isolation here where we both would have wanted to get away from each other at times.

 So there I was, just beginning to think about techniques such as digging my non-existent fingernails into my palm to block the record from my mind when out of the blue Robert starts talking to me about Tracy Chapman and music in  general. It helped get me back in the room so to speak. Steve intervening to help out from above I suspect. Bless him for looking after me still.

 All in all the interview seemed to go well. That is apart from nearly giving poor Robert palpitations when I started whizzing through the suggestions from the letter ‘N’ in his A-Z of Greenwich slot. Thus meaning he was in danger of having thirty minutes air-time left with nothing more to talk about, I hope he and the listeners feel it wasn’t a disaster and I didn’t hijack the show too much?

After the show I got to meet Duncan Martin who is another DJ at the Station. Duncan took a photo and said he would look into getting something on the web site if possible. Duncan kindly gave a shout out to Carers and HD Awareness Week on his Sunday morning show too. If Duncan is able to post up a link or three that will be great as I was aware I and Robert were giving out a lot of information on a lot of areas in a small amount of time. If we get something following the interview it will be great to have another reference point in the public domain.

I hope to do another blog post shortly after this one with the salient points I wanted to get across including web links. This post is long enough as it is!

 Having said the above, there is always room for a poem or two and snap of Steve.

I have given below the poem I read out on air with a bit of background as to why I chose it. I have also put underneath a photo of me and Steve taken in 2005 at a wedding reception.

I love that snap as I know how much effort it was for Steve to function on a day to day level as it was back then and such events were hard work for him (remember within 5 years of that photo he passed away bless him). His will-power and stamina and sense of pride and dignity were not going to be compromised by HD if he could help it! I am very proud to be photographed with him!

After the photo I have another of my poems. It’s called ‘The Magic of Music’.

This is as good a place as any to highlight again how important the work is of those on radio stations is.  Thier work enriches the lives of those in general and especially those affected by illness such as Huntington’s. Music really does keep the person inside alive longer and keeps the brain going for longer. That’s not just me and wishful thinking. As my poem highlights, it is now a subject of medical research.

Poem read on the Show:

I’ve chosen The OCD Plea as OCD was one of the main traits of Steve’s Huntington’s.

 The poem outlines it was hard for him to try to function at times, and it was hard for me to accommodate his illness but it was up to me as his carer to move outside my own and others’ comfort zones.

 The OCD Plea


 Obsessive Compulsion Disorder (OCD) is now a relatively well known illness. It can form a big part of HD. It can be infuriating when there is no rational explanation for why certain things have to be done in a certain way; or even done at all; and yet the world seems to revolve around trivial things. That said…

 However hard it may seem; challenging the behaviour makes life even more frustrating for the observer and distressing for the sufferer who cannot help it when all is said and done. I admit it took a while for me to get there but, from my own personal experience, sometimes it is best not to question… just accept/indulge and go along with it.

 Obsessive Compulsive Disorder;

Just another symptom we get.

The rituals we need, within our lives,

Particular needs to be met.


My partner just don’t understand it;

She thinks that I’m being a pain.

Doesn’t she care, that by placing that there,

I must start this all over again?


The socks go on after the trousers;

The shirt goes on after the shoes.

It’s not like she’ll die, if she doesn’t know why,

This particular order I use.


So why does she still go on moaning?

It’s not her who has this HD.

The rituals are my way of coping,

So why can’t she just let me be?











The Magic of Music


 Professor Edmond Chiu, as Senior Lecturer – University of Melbourne, gave a presentation on HD and noted “Our experience is that the Huntington’s patient retains the ability to appreciate music right to the end. It may be that the part of the brain controlling music ability and music appreciation is not affected by Huntington’s Disease. We don’t know where that part of the brain is, but where ever it is they appreciate music. That is a very important part of their quality of life.’

 This poem tries to reflect my own husband’s continued love of music which seemed to stimulate his brain and generated much dialogue between us. A certain track or video would trigger memories and/or emotions. I found it important to have music around us and listen out for familiar tracks where my husband would want to talk about the group; a concert we went to etc (Rock or eighties music in our case).

 Even if Steve only got out a few words, my giving him my automatic attention and adding a little bit at strategic moments to show I was listening/sharing/appreciating his thoughts, seemed to truly awaken him. In its own right though, music by any media would bring him back to how things were before HD started fighting for his capacity to think. It was as if music, and the memories thereof, was so precious it was held somewhere deep in the brain protected from that wishing to destroy it.


He’s 10 years into symptoms;

The illness taking hold.

A couple of infections,

Have helped to make him old.


The frame once large and muscular,

Has since been taking flack.

A special chair’s been purchased,

To help support his back.


And whilst to most observers,

He’s not the man he was,

His friends all know it’s not the case,

He’s still the same because.


Because when they play music;

When hard rock fills the air;

The change in him amazing!

Their old mate’s sitting there.




Posted on June 9, 2013, in Uncategorized. Bookmark the permalink. 4 Comments.

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