reflections

Let me start this by thanking everyone who’s left a comment, emailed me or called me. All the kind words and support I’ve received have truly helped me through the last few days.

I guess I’m writing this for two reasons. Firstly, almost everybody I’ve spoken to in the last 48 hours has asked the same set of questions - so I thought it might be wise to answer them all in a single place, which should hopefully give everybody who reads this a bit more context on what’s been happening. Secondly, I’m also hoping that this article might prove useful to those who find my site while searching for information on Huntington’s.

I guess my brain is still a bit raw after Friday, but I’m beginning to feel like I’m slowly getting a grip on the situation. I fully intend to move on with my life - although perhaps at a slightly slower pace.

What happened on Friday then?

I found out that I have the gene that leads to Huntington’s Disease. I have a CAG Repeat of 44.

What’s Huntington’s Disease?

It’s a genetic disease with no known cure. It attacks the central nervous system, causing uncontrolled movements, loss of intellectual abilities, and emotional disturbance. The eventual outcome is death.

In addition to the 35,000 Americans who currently have the disease, there are an additional 150,000 who carry the gene and will eventually develop the disease.

The processes that cause HD begin many years before there are recognizable symptoms. While the age of onset and rate of disease progression vary, early symptoms of Huntington’s disease include mood swings, depression, irritability and cognitive impairment. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty swallowing. Symptoms of Huntington’s disease typically become noticeable in the mid 30s to mid 40s, with the life expectancy ranging from 10 to 25 years after the onset.

Shit. So what does that mean for you?

Well, I’m not currently exhibiting any symptoms of the disease - but a CAG Repeat of 44 means that I will probably develop fully-blown Huntington’s Disease between the ages of 40 and 43. However, that rule does only apply to half of the people with the gene - but I will certainly get it at some point in my lifetime.

The onset of symptoms could potentially start next week, with me having the full disease in 5 years. Alternatively, I may not start being symptomatic for 10 years - with it taking a further 10 for the full disease. It’s really, really stupidly vague.

But there are treatments, right?

Not yet. Some of the early symptoms (like the depression and jumpy movements) can be helped with existing medicine - but at this time there is no commercially available treatment to prevent the deterioration of brain functions or other later symptoms.

However… There is some very exciting research taking place at the moment, with a lot of money being poured into development. For example, one treatment (HD-02) has been highly successful during early trials on mice, and is expected to enter Phase III trials (i.e. human testing) during 2008.

I don’t want to get into the whole ‘animal rights’ debate at the moment - before anyone decides to raise the point!

Isn’t there anything that can help you now?

It would seem so. Abi has spent every spare moment since Friday researching the subject, and she’s come up with a few things that may help to delay the onset of symptoms. These include a number of herbal pills: Green Tea Extract (removes Iron build-up from cells in the brain), EPA/Fish Oil (protects neurons in the brain), Vitamin E (helps the absorption of the EPA, and also acts as an anti-oxidant) and Creatine Monohydrate (increases levels of oxygen in the brain).

Daily exercise also seems to help, as does Caffeine and Nicotine - which protect neurons in the brain, and which I fortunately already consume in vast quantities! There’s also a whole load of other beneficial foods, including Blueberries.

It would also seem that simple things like keeping the brain active, laughter, and social interaction all play a part in slowing down the onset of symptoms.

So how do you feel?

You really want to know..? Well, I’m currently experiencing a Jekyll & Hyde thing.

One minute I feel like crap… I get a gnawing feeling deep inside me, telling me that I’m not going to see my daughters get married, or that I’m going to die slowly and painfully - robbed of all my dignity. This leaves me feeling sick, dizzy, and shaky.

Then I’ll suddenly brighten up, feeling like a weight’s been lifted from my shoulders. I think about all the scientists who’ve made it their only concern to develop a treatment, and how Abi will do (and is doing) everything she possibly can to help me get through this. Interestingly enough, this leaves me sick and dizzy too - but with hope rather than despair!

I’m starting (slowly) to see the positive moments outweighing the negative ones though - so I guess that I’m gradualy getting back on the right track, even if the train’s going to be delayed for a little while…

Share This

I have an appointment tomorrow. It will end almost a year’s worth of uncertainty, doubt, fear and resentment.

If I test positive for the Huntington’s gene, then there’s a good chance that I’ll be dead within the next 20 years. During that time I can expect to slowly lose my mental stabilty and my social skills, gradually alienating those who are closest to me. Most people with Huntington’s have few or no friends, and repeatedly attempt to end their own lives.

The testing has been significant. I’ve been seen by consultants and counsellors, undergone psychometric analysis and had my blood taken. Now all that remains is for me to get the result - which has turned out to be the toughest part of it all.

I thought hard about whether to write this post, and if it was necessary to let the people reading my blog into this part of my private life. I decided that I should say something, because like it or not this thing has fundamentally altered who I am, affecting me in more ways than I would like to admit. In doing so it has changed what I write, and so how I blog.

One thing that I’ve learnt is that life can be fragile. You need to cease each day with both hands, and don’t let go until another one comes along.

Share This

What do you feel you need to accomplish to be a success? Perhaps it’s all about the money, or enjoying yourself? Maybe you want to win awards, or go freelance? Maybe you’ll only feel successful once you own your own company?

I’ve been tagged for this ‘accidental meme’ by Tara at the Graphic Design Blog, who was asked the questions originally by Lauren Marie Krause (a fresh new designer from California). Ironically though, the questions she’s asked me to answer are ones that I’ve been recently been asking myself!

I’ve been in the business of web and graphic design for about 15 years now, and my client list features both start-ups and blue-chip organisations, from all over the world. Feel free to have a look at my portfolio if you like!

1. How did you get started in the business?

I originally discovered the Internet way back in 1991. I used to spend whole days - and ridiculous amounts of money - sitting in Cyberia (just off Tottenham Court Road in London), and it was then that I decided to make my first website. After a couple of months of fielding emails from people asking who had made my site, I realised that I could make some serious money if I taught myself how to do web design properly. Six months later I launched my first ‘virtual’ web design studio, and I haven’t looked back since.

2. What kept you going in those early years?

Self-conviction. If you don’t believe in yourself, then who else is going to believe in you? I guess it helped that I got a constant stream of clients right from day one - including the likes of Virgin and Easynet. It was rewarding to see something I had made being visited by thousands of people every day!

3a. Did you ever feel like you weren’t good enough or you would never make it in this industry?

Of course. As my freelance web design business got bigger it seriously interfered with my school work, and I used to get it in the neck from teachers on a regular basis because I hadn’t done an assignment on time. On more than one occasion I really felt like chucking the towel in and focusing on my studies.

3b. How did you work through that?

With the exception of one guy, my teachers and tutors just didn’t understand (or want to understand) computers - and the one that did forced his way into the school to manage the new IT suite, and only because nobody else wanted to! It was with his reassurance that I began to feel that I could really make a career for myself in design.

4. Do you look at others today and think “Wow, I wish I were that good”?

All the time. Designers like Jon Hicks, Dan Cederholm and Bryan Veloso have all had an influence on stuff I’m working on at the moment, but I’m constantly looking at the work of other designers and wishing I were as good as them. Having said that, without aspiration there is rarely growth.

5. How do you measure success?

I don’t really have a single way of gauging how successful I am. Things that people say to me, passing comments, overheard discussion - they can all make me feel like something I’ve done has made a difference.

6. By your standard, do you think you are successful?

I think I’m getting there. I’m now working full-time freelance, which is something I’ve always wanted to do. Of course, it was always my aim to retire at 35 - but I’ve got some things in the pipeline that might end up making that a reality, which would be really cool!
In the true vein of tag memes, my usual suspects willing volunteers are:

One of the team from Freelance Switch
webee from the bee design
Lisa from Design, Life, Culture, Whatever…
Jon Hicks from Hicks Design (hopeful, but you never know…)
Zep from The In-Sect

[Thanks to Mike, Charity, Tara, Lisa, David Zemen, Paul Johns and Paul B for some fantastic comments on my last post]

Share This

Today’s been a rotten day. The phone has not stopped ringing, I have had nasty emails from people accusing me of things I haven’t even done, I am still trying to debug masses of code - and to end the day I spent 3 hours on the phone to a prospect, repeatedly explaining something that a kid would grasp in 5 minutes.

It was during my exhausting conversation with the prospect that I had a strong sense of deja-vu. When he hung up, I realised that I’d had a client just like him years ago. In fact, clients and prospects seem to fit a few generic types - for me at least! These are my personal top five…

The Snail

These clients can make or (more often) break freelance designers. They do this by paying your invoices six weeks after the really, completely, absolutely latest date you can possibly accept payment - and ironically they are usually the ones who get their deliverables on time, every time. Maybe I should try the “treat ‘em mean, keep ‘em keen” method of invoice negotiation instead?

The Charity Case

I’ve done my fair share of unpaid work for charities in the past, and I’ve really enjoyed most of it - but this is something else entirely. These clients make paid projects totally unprofitable for you, because they take far more time and effort than you’re actually getting paid for! This problem comes in many flavours: demands for reduced prices and asking for extra unpaid (out-of-hours) support are the two I come across most often.

The Invertebrate

These guys will blindly accept anything you say, provide anything you ask for, pay you more money if you say you need it, and wait for weeks past the deadline before they call to ask how you’re getting on. So these should be the perfect client, right? Wrong! I should love these clients, but they bring out the worst in me! When doing a project for an invertebrate it’s guaranteed that I’ll be at my most lazy, unmotivated, uncaring level… It’s quite a scary metamorphosis!

The Lo-Tech

These are the ones who frequently make a face like they’ve just seen you eat your own nose - when all you’ve actually done is talked about email, social networking, blogging or web accessibility. They refer to video recorders as “Xerox machines”, think broadband is a new radio frequency, and ask for everything to be printed out on foolscap and posted to them.

The Pixel-Shifter

I hate these guys the most. I’ve spent six months trying to create a simple business card for one, and then bolted when they’ve asked me to rework their logo! After showing them any kind of design, they will typically say something like: “Could you move that down half a millimetre. Hmmmm. Now move this left an eighth of an inch for me. Hmm. Now make the text one point size bigger, and add two percent magenta to that block of colour. Hmmmmmmmm. No - I don’t like that at all. Perhaps you could try a different approach?”

The Conclusion

So… What do you do if you’ve got one of the above client-types on your books? Well, personally I’d give them the boot after you’ve finished any outstanding work for them! There are so many nice, friendly, understanding, helpful clients looking for designers, and I believe that most people can get away with being a bit choosy!

Who have I missed then? What are you stereotypical clients like? Got any clients like mine? Leave a comment and let me know!

[Thanks to Zep, The Paper Bull, Charity, Mike, Aaron, Tara, Lisa and Ludovic for your comments on recent posts]

Share This

I don’t know whether it’s turning 30 that’s done it, or if it’s more to do with my Huntingtons testing, but I found myself yesterday thinking about organising a reunion of the people I went to Primary school with.

To be honest, it’s not something I’ve seriously considered before. Since I left education in 1997, I’ve only heard from two classmates, and both of those I knew only from Secondary school. I’ve never been sure whether to be unhappy about that or not - after all, I’ve not initiated contact with anyone either!

I asked my wife if she thought a reunion would be a good idea, and she suggested that Primary school reunions in general are usually a bad idea - and that people you knew at that age would be unlikely to be interested in meeting again.

However, I did what I usually do when my wife gives me advice - and I ignored it.

I spent about an hour on various people location sites (including Friends Reunited, and another hour Googling for names I vaguely recalled - and by the end of that I had located three out of 28 class members online, and for all three I found photos of how they look now (amazingly enough all three have barely changed, and were instantly recognisable). I then sent private messages to the people listed on Friends Reunited and called it a night.

Something worked though - and this morning I had an email from somebody I haven’t spoken to in two decades, saying how much she thought meeting up again was a great idea; it turns out she only lives 15 minutes away from me! Then I had another email this afternoon, from another. Between myself and the second classmate, we’ve managed to put a full name to nearly everybody in the photo (the only one I have now, and awful quality because it was scanned so long ago). I’m the one in the red jumper by the way…

So now begins the hard part - finding everybody and making contact. Then pulling them all together, at a venue we can all get to, and quickly too - so that everybody involved doesn’t get tired of the idea before it happens! I’ve already had a couple of lucky hits on Google this evening, so it’s going well so far - although I don’t think for one moment that it’s going to be an easy thing to pull off!

The thing that fascinates me most about this experience so far, is how the children who shone within the confines of school, simply faded when faced with the harsh lights of the adult world. Others, those who were often shy and withdrawn at school, appear to have managed the transformation to adulthood with both grace and enthusiasm.

I look forward to testing this assumption when I meet them all in person.

Have you participated in a school reunion? How did it go? Perhaps you’ve organised one yourself - how did that work out? Got any tips, or great websites to share for reunion organisation?

[Thank you to Tara, David, Zep and Charity for your comments on my previous post]

Share This