Questions, questions ..

I suppose that its no surprise when sharing information about an invisible condition that it raises lots of questions from friends and family. I’ve genuinely been overwhelmed by the kindness and curiosity and as many questions are similar thought I would do my best to answer them here.

Why didn’t I know about this?

Until last year, my macular dystrophy really had very little impact on my vision. I had a small smudge in my vision if I closed my right eye. I struggled in bright light so just wafted around in my sunglasses – even if it was cloudy. You probably just thought I was a bit of a diva 🙂

Is it AMD (age-related macular degeneration)?

No. I have a different macular condition – its part of a group of rare inherited conditions called Juvenile Macular Dystrophies. The key difference is that it is a genetic ‘fault’ that affects the macular rather than a gradual degeneration. Macular dystrophies therefore impact your vision much earlier than AMD, but are usually slow to progress in early stages.

AMD affects 1 in 200 people at age 60 and 1 in 5 at age 90 – the cause is not known but the key factor is that as we age cell regeneration reduces and increases the risk. This is why you are likely to have heard of AMD, or know someone with it. It is the biggest cause of sight loss in the UK. The Macular Society supports people with all macular conditions, including AMD.

Why are you talking about this now?

Last year the dystrophy progressed to my right eye. Now when I close my left eye any straight lines are wavy and alongside this, the smudge in my left eye is bigger.

Any visual issues, puts your brain in overdrive as it works hard to interpret the signals from your optic nerve with missing bits. People that have had floaters probably have had some experience of this. After a while you don’t ‘notice’ the floaters.

When things changed for me last year my brain struggled to keep up and I suffered with silent migraines (known as ocular or retinal migraines). I was left with strong dizzy spells and had to undergo several months of medication and specialist physio to get me back to a stable place.

I gave up tennis and skiing and as a result started explaining more about my condition and the adaptations I was having to make. I even struggled during this period with simple exercise and my usual long dog walks became shorter and with the potential for sudden onset of migraines and dizziness I stopped walking on my own.

Why the walks?

Towards the end of last year everything stabilised. Whilst the visual impact has progressed, the migraines have become less frequent – maybe one a month instead of 2 or 3 a week.

In December I ventured back out on a lone dog walk and I am now back in my walking routine. I am hoping by regaining my fitness I can conquer the last of the dizziness and maybe return to tennis. Although I’ll still miss the ball in my blindspot everytime! I love working towards a goal so started to think about finding a walking challenge to give me a focus.

I also wanted to support the Macular Society who have been a source of knowledge and advice on macular dystrophy. They support research into potential treatments and as with all charities rely on donations. They did not have any specific walking challenges in their fundraising activities, so I set about creating my own.

When are the walks – are you really doing 20?

The first walk is in the diary for 20th February. The plan is to do roughly one every 2 weeks so I have some contingency for bad weather and short daylight hours at the start and end of the year. I will definitely be doing 20!

Logistically its a bit of a challenge as I have to plan the routes in advance, keep the full day clear, sort transport and consider conditions underfoot. There’s also other factors such as part of the routes being used for organised events and races – I don’t want to find myself accidentally in the middle of a cycle race!

Hope that answers some of the questions. Over the coming weeks my blogs will be about the walks I have completed and I will do my best to answer any other questions you have. Can you all now focus on wishing these storms away so I have good weather for next week!!

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