Conferences – Well Eye Never

Lockdown Favourites – Weeks 13-16

Hello again. Miraculously we’ve made it past the halfway point in the year, although admittedly it feels like a lot more time has passed. Months effectively haven’t existed for a little while now, with all the weeks just blurring into one continuous sequence.

It’s also strange to think that we passed 100 days of lockdown in week 15. That seems to have gone by quicker than I’d expected, although I know for many that time will have dragged terribly, and certainly early on I found it difficult like everyone else. But I’m glad I’ve been able to settle into a new routine and adapt during that time. Connecting with friends, homeworking, blogging, music, TV and film have all got me through it, and are continuing to do so.

So I hope you’re all continuing to keep safe and well. Our lockdown measures here in England have been eased significantly further again, and the government have ended their daily briefings, but as the virus is still in circulation we all have to remain very cautious. There will inevitably be local outbreaks, which may lead to lockdowns of certain towns and cities as and when necessary (as Leicester have already found), but we just have to hope the entire country won’t be shut down again. The most vulnerable people who are still shielding will have to remain indoors until early August, when they can finally go out again if they feel ready to do so.

Regular readers will know that my mother and I have been voluntarily shielding, even though we’re not explicitly required to do so, for my mother’s safety in particular. In recent weeks I have been getting out a little bit more though, and Mum’s been at once, as I explain during this post. It’s just around the local area though – I still don’t intend to use public transport for the time being, even though there are safety measures in place for train travel, as the risks still feel too great and there isn’t anywhere that I need to go.

So here’s my latest update on the things I’ve been doing and enjoying over the last few weeks, with accompanying videos for weeks 13-14 & 15-16. None of it is sponsored to appear here, but I was paid to attend the CXcon event as you’ll see. I hope you enjoy looking through it all!

September 2019 Favourites

Those of you who have been following along recently will know that I had some issues in August that stopped me going out much. I was still able to do a July & August Favourites post, but the August part of that wasn’t very substantial.

September has continued to be rather mixed, as I’m still having an issue with my feet, so I didn’t get out too often. I think it might be hives of some sort, but the antihistamines are keeping them right down, so they’re not getting worse and are tolerable. It means I’m able to get around more easily, and also go out and about if I don’t overdo it. I’ve got a dermatologist appointment on 2nd November (which was thankfully moved forward from the original date of the 30th), so hopefully we can start sorting it out then.

And for those wondering about my Personal Independence Payments claim, no decision has come through yet. But I had 3 text messages to say they had the report from my face-to-face assessment, and then 2 letters in the post to say they have all the information they need to make a decision. So I just have to wait and see now.

Despite all of that, however, I’ve still ended up with a fair number of things to write about for September. I did manage to go out over the course of a weekend, when my foot was behaving, plus I’ve got some exciting videos and articles to share that I’ve been involved with, and there are some TV shows and music releases I want to mention. And as usual, no products in this post are gifted or sponsored, and all opinions are my own. So I apologise that there won’t be much in the way of London-specific stuff this month, but I still hope you enjoy this post and video as always.

June 2019 Favourites

We’ve reached the halfway point in the year, and summer is finally blessing us with decent weather. And I’ve had a very busy month!

Firstly, there have been some disability related developments, most of them positive. In particular, I’ve spoken at a conference, been a guest on a podcast, and I was filmed for another documentary. So my visual impairment led to a few great opportunities in quick succession, I’m happy to say.

On the downside, I’ve finally received the call-up letter to switch from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This basically means I have to fill out a huge form about how my disability affects me, and then have a face-to-face assessment with a health professional, so the government can decide if I’m entitled to benefit payments. It sounds relatively simple when worded like that, but most disabled people will tell you it’s anything but. So that’s going to be on my mind a lot over the next couple of months at least, and I’m not looking forward to the process. But I’ll let you know how it goes at a later date. I’m not going to bore you with a rant about it in this post!

Thankfully, apart from that, I’ve been able to enjoy the month in many other ways. I went on a lovely weekend break with my girlfriend, I’ve been out in London for more exhibitions and walks, my girlfriend and I enjoyed a new film at the cinema, and I’ve enjoyed new TV shows and music releases at home. So there’s plenty to get through. As always, I’m not sponsored by anyone mentioned here, I’m just sharing these things because I enjoyed them. And I hope you enjoy this month’s post and video!

Naidex 2019

Naidex is Europe’s largest event showcasing the latest technology, products and services for disabled people, helping them to live, work and travel with greater independence and comfort. The event is now in its 45th year and it’s absolutely massive, occupying a large hall in the NEC Birmingham for 2 days.

I first went to the show last year, having never heard of it before, and enjoyed having a good look around over both days. I took in as much as I could, even things that weren’t particularly relevant to me, to get a good sense of what was there. So this year, now that I knew what to expect, I was able to prepare more, and only went for 1 day. I knew that would be enough time to see everything that was of most relevance and interest to me, and I think it was a wise move. Other people may find going for both days very beneficial though, it just depends how much you want to look at.

Also for the second year running, I was proud to be an ambassador for the show. That simply means we plug each other on social media, so I give them shoutouts and they promote my blog in return. Beyond that, I’ve not been gifted in any way to promote or mention the show, I paid all of my own expenses to attend, and I’m not obliged to give any kind of review. Likewise, I’m not sponsored by or affiliated with any companies mentioned in this post. I just want to go through what I saw and picked up information about, and all opinions are my own as always.

So let’s get on with it, and I hope you enjoy my rundown of Naidex 2019!

Nystagmus Network Open Day 2018

Even though my abseil for nystagmus research has had to be postponed (it’ll now be on 21st October), nystagmus has still been the big topic this month, because on Saturday I attended the annual Open Day held by the Nystagmus Network.

This was my second time going to this event, following my experience last year when I gave my first public talk. So this year was much more relaxed, because I didn’t have to do anything! And it was a wonderful day, so I thought I’d give an overview of how it went.

April 2018 Favourites

Time for another monthly favourites post, and April was very busy for me. There were a couple of big important events, a couple of interesting museum visits, vanother theatre trip, and a few nice walks now that the weather’s improving. So I hope you enjoy this little post and video recap of what I got up to.

Naidex 2018

On the 25^th and 26^th of April I went to the Naidex show for the first time, which was held in the Birmingham NEC. It’s Europe’s biggest event dedicated to disability and independent living, and is full of companies showcasing the latest technology, products and services they have to offer, along with seminars and panel discussions, a mobility test track, a sporting arena for people to try out different activities, a moving and handling lab offering training for healthcare professionals, and more. And it’s completely free to attend, which makes it very worthwhile going to check it all out.

I’d never heard of the event before, so I was very intrigued to see what it was all about. I became aware of it because I was one of various bloggers contacted by Cláudia from the Prysm Group marketing team. As well as telling me about the event, she asked if I wanted to be an ambassador for it – which basically involved me giving them a plug on my social media channels, and they would promote my blog in return. I was happy to do that, given my interest in the event, so that’s what we did. Hence you will have seen me mentioning them every so often over the past month, and they did indeed share the link to my blog on Facebook and Twitter a couple of times as well. I didn’t receive any payments or gifts for it, we were literally just exchanging posts to promote each other.

And the event itself was great, I really enjoyed exploring it over both days. So I want to give you a comprehensive review of the event, and tell you about the various companies, products and services that I became aware of. As a result, this is quite a long post, but it is divided into headings with a contents list if it’s helpful. So I hope you enjoy reading about it!

Note: Footage from the event can be seen in my April Favourites video. I also discussed my Naidex visit with Fern Lulham on AMI Audio‘s Kelly & Company show on 24 May 2018.

My First Aniridia Network Conference

One of the first people I met after moving to London last year was James, a trustee at the Aniridia Network. He got in touch after he saw me writing about aniridia on my blog, and noticed that we had other things in common too. So we met up and became friends, which was a great welcome to London in my early days here.

Over the months since then, I’ve became a voluntary communications officer for the charity, which involves helping out with blog posts, social media content and email newsletters, as and when time permits. One of the first things we did together was to edit the promo video for the first Aniridia Day last year, which was very successful.

And now the latest project has been recording and publishing material relating to the Aniridia Network Conference, which took place on 14 April. It’s their flagship annual event, bringing together people with aniridia, parents of children with the condition, medical professionals, researchers, etc, for a day of presentations, activities, socialising and information gathering.

And this was my first time at the conference, so I was really looking forward to it. Not only would I be helping out with filming, but I was also asked to give a speech there as well, so it looked set to be a very busy day!

So in this post I want to tell you how it went. And this is just my own personal perspective, this isn’t part of my social media work for the charity. They are of course welcome to quote from this post, but they haven’t asked or sponsored me to write this. You can see their own updates about the event, including photos, videos and feedback, on their website, Facebook, Twitter and Youtube pages, with much more to share over the coming days and weeks. But for now, here’s my own experience of the day.

Speaking At The Nystagmus Network Open Day

On Saturday, I attended the Nystagmus Network‘s Open Day in Birmingham, the first time I’ve ever been to an event of this nature. The only time I’ve previously met a group who share one of my eye conditions was after Sight Village last year, when I got together with a handful of people with aniridia in a coffee shop. And that was wonderful, but this weekend’s event was on a much bigger scale. This time, I was going to a big conference for people with nystagmus with hundreds of people in attendance. And I was very much looking forward to.

However, I was also nervous, because I had been invited to be one of the speakers – making this the first time I would ever give a talk in public about myself. I wrote in my last post about how this came about, and how I prepared for it. So now I want to tell you about the day itself and how it went.

Preparing For My First Public Talk

This weekend I was invited to attend the Nystagmus Network Open Day in Birmingham. Although I’ve been to things like Sight Village before, where I got to meet a handful of people with aniridia, I’ve never been to a large, dedicated conference for people with the same eye condition to network and find out information. So that in itself was going to be interesting.

But I wasn’t just a regular attendee – I was going to be one of the speakers! So that meant doing another first – publicly talking about myself and my life. This was naturally a daunting prospect, but exciting too. So I agreed to give it a go, it was worth a try.

And I wanted to write in detail about my experience, which I’m going to split over a couple of posts so it doesn’t get too long. I’m then going to publish a written article version of my speech here, and a video version on my Youtube channel, so you can see what I said, and maybe it will give you some inspiration and reassurance too. So I’ve got quite a bit to share!

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this: