A conference attended and Christmas closing in

Well it's been over a month since my last post and the time seems to have flown by. At the end of November I attended a conference in Sligo along with a group of other PhD  and researchers from my university. It was technically only one full day but felt much longer. We drove down in a minibus on the Thursday, a long drive made longer by the dark and the cold and the fact I managed to drop my ipod below one of the seats and wasn't able to retrieve it until we arrived due to the cramped nature of the bus. I have to say the hotel was very nice, my room was massive considering I was the only person in it! I had a large bedroom with a double bed and a single bed, a living room, a small kitchen and a good sized bathroom. We had dinner in the hotel and then walked over to the campus where the conference was being held for a talk by one of my supervisors and then a "welcome reception". Friday was very full on, early start, talks started at 9am and went onto 5pm with workshops in the afternoon (with breaks for tea/coffee and lunch). Then there was an AGM of the organisation's whose conference it was. Then there was the poster presentation, I had made a poster for the conference so people walked around and looked at the different posters and spoke to the people who made them. Unfortunately I didn't win the best poster prize but it was good to show off my research and to discuss it with different people. After that I had to make a mad dash back to my hotel room to leave my notebook and other things back before rushing to catch up with the people walking into Sligo for the conference dinner. I wonder if these things are actually ever good? I've been to two now and the food wasn't great apart from the dessert. It's not the best environment for someone with a hearing aid and someone who's speech people struggle to understand, trying to talk to people across a large table in a very noisy room. I ended up walking back to the hotel in the freezing cold while most of the others went to some bar (I found out the next day they couldn't get into that bar, went to another bar, had one drink and then got lost on the way back!) Saturday morning was a bit of a struggle, was running late due to having to check-out and then had to roam around the campus looking for a way in since the doors we used before were locked due to it being Saturday. There were some more talks, a prize-giving and then a quick lunch before we had the long drive back to  Belfast. Thankfully it was a lot more pleasant especially since I kept hold of my ipod!

The lovely Sligo Clarion hotel

My luxurious bedroom

Me and my poster

The lovely dessert

Back to my PhD itself I have been continuing to work away and I'm close to finishing the work on my third species and will hopefully have it completed soon after Christmas. I did receive the welcome news that my second paper has been published, again I must say I do not expect anyone to purchase it but I've included the link to it below just so you guys can see it:
Broad-scale genetic homogeneity in natural populations of common hazel (Corylus avellana) in Ireland

It is hard to believe that Christmas is in two weeks, I have to say I don't really feel very Christmasey yet despite putting up our Christmas tree today, the mild weather doesn't help either. I am looking forward to it, that said I think there is a problem that it is always over hyped. Christmas day itself always flies by and the realisation that it is over for another year is always depressing. That said I am looking forward to time off, presents and of course lots of delicious food.

Hope you all have a great Christmas/X-mas/holiday, hopefully I'll write more posts either this side of Christmas or more likely after.
-James

Another couple of months gone

Well summer is definitely over, its cold, the nights are dark (and possibly full of terrors) and there is already talk of Christmas! I'm not even going to apologise any more for the gaps between my blog posts, I think both myself and my readers will just need to realise that there will not be a fixed schedule for my posts and they will appear when I have the time and willingness to write them. I have been quite busy since the last post. I was away for a week with my parents, we went down to Enniskillen in County Fermanagh for a few days which was nice, the highlight probably being the boat trip we took which stopped off at Devenish Island. We then went down to Dublin, my first visit other than very brief one to see Fall Out Boy live for many years. I was a bit taken aback at just how busy it was. We did a lot of walking about, did some shopping, had a walk through the university and saw Bill Bailey at the same venue I saw Fall Out Boy. For those who don't know Bill Bailey is a British comedian who does stand up comedy along with various musical things. He is extremely talented and we were all in stitches by the end of the show.

We also took a short weekend break down to the north coast a while back which was nice, I've uplaoded pictures to my flickr account:
https://www.flickr.com/photos/136005436@N02/albums

In terms of my PhD I had a frustrating couple of months sorting out my data, doing analysis and then writing up my work on hazel. The paper on that has now been sent off for review before hopefully being published. I have now moved on to my next species and have been working away in the lab. As much as it is nice being back in the lab it is also rather tiring and the two busiest days are Thursdays and Fridays when doing DNA extractions. Unfortunately at the moment I'm forced to do DNA extractions most days since the machine I need for the other stuff is broken. I'm now in my final year (of being funded) which seems rather crazy. After having the lab to myself the majority of the time since my supervisor left along with the other person who worked in the lab (along with the other PhD students finishing) I'm now sharing the lab with a number of new people. This was to be expected as the lab wasn't being used to its full potential, that said the increased noise/activity is difficult to get used to.

I thought I had mentioned before but I can't find anything after a quick look. I have started to volunteer as a dog walker at an animal sanctuary. I had actually done it many years ago for the volunteering section of my bronze Duke of Edinburgh award but stopped a while after. I realised that I was spending my weekends mostly loafing about so decided I should start volunteering again and maybe meet some new people in the process. Given that it has been many years since the last time and the whole health and safety thing going into overdrive I had to take part in both a general induction as well as a one to one induction. That took a while since they were only put on a few times a year but eventually attended both of them. I've been up quite a few times since and it has been mostly enjoyable. Only frustrating thing is when you go to walk a dog only to find that someone else has taken it out without filling in the sheet properly.

That's what's happening with me at the moment, thanks for reading.

Ahead of the curve!

There has been a lot of fuss recently with Apple's announcement that their latest Iphone will not have an audio jack. and there has been a lot of public outcry and misinformation spread but it turns out that they will come with a pair of earphones which connect to the phone through the charging port. It will also come with an awkward looking adapter to use with traditional 3.5mm audio cables. Apple's goal however is to have people splurge on their fancy new "courageous" wireless earphones.  They are not the first company to make wireless earphones/headphones but it amuses me that this is the big new thing. This is because I have been listening to music tirelessly for well over 10 years now!

At this point I feel like I should reference an old post:
http://1in50000.blogspot.co.uk/2014/03/my-gear.html

However reading it again makes me think I didn't explain things very well. Basically starting back in primary school I was given an fm radio system (I also call it my mic system, my radio etc,) which is a device designed to help me hear a teacher better. So originally the teacher wore the system with a microphone and I wore a separate box with a cable connecting to my hearing aid. Of course technology moves quickly so after a while I no longer needed a box, instead the teacher had the mic system and I had a receiver which attached to my hearing aid via an electronic shoe (you can see a picture in the post I've linked to).  So this allowed me to hear the teacher clearly without any wires! The great thing was that this also meant I could listen to music wirelessly. With the original system I could swap between the microphone cable and an audio cable and with the current system it has a separate audio jack which means I can use any normal 3.5mm audio cable to connect it to my ipod or the audio jack on my laptop etc.

My fm system connected to my ipod by way of a normal 3.5mm to 3,5mm audio cable

On the whole there are many advantages with my set up, I don't need to splurge on expensive noise cancelling headphones, I can just select the setting on my hearing aid which only gives me the sound from the receiver and mutes the hearing aid microphone, nobody can tell I'm listening to music (there is a funny story about a time when I was listening to music too loudly in high school but the teacher couldn't figure out where it was coming from) and I don't have to worry about tangled headphone/earphone cables. There are also disadvantages for example it is a bit of a pain to have to carry the fm system as well as my ipod, especially in warmer weather when I'm not wearing a coat/jacked with an inner pocket, the fm system needs to be charged, the audio cables whilst cheap have a habit of breaking after a number of months due to not being very flexible and whilst it is cool being able to listen to music without people knowing, there are many times when someone will start talking to me and I'll have to quickly change settings on my hearing aid to switch it back to normal and then apologise to them and have to explain that I was listening to music so I missed what they said.

It is somewhat ironic that despite being so ahead of the times with being able to listen to music wirelessly that I sometimes wish that I could just plug my ipod straight into my hearing aid and not have to worry about carrying my fm system. I did spend a lot of money on a special cable which was meant to do just that however it had a lot of annoying background noise and was awkward to connect so I ended up getting a refund. Unfortunately I don't think there is much incentive for the hearing aid companies to come up with a receiver with a normal audio jack, maybe it is something I'll look into.

Thanks for reading.

Guess who's back?

Well this is a bit awkward, I didn't intend to take a break from this blog for several months but it just kind of happened. Its easy at times to come up with lots of different topics to write about but actually sitting down and writing is much more difficult. I must confess that there has been other things contributing to it as well. I know it will sound silly but it has been a bit frustrating for me seeing other people finally step up and write articles or make videos about having TCS and getting copious amounts of praise. I started this blog because I struggled to find anything from people my own age. I write this blog in my free time along with managing the Facebook group. In a way it seems like certain people are being singled out for praise when writing or being an activist is their main focus, whereas the rest of us are just trying to get on with things. On many occasions I also seem to be in the minority when discussing issues like surgery, hearing aids and of course Wonder.and that can be tiring.

Of course I have also been busy with my PhD, I am now approaching the end of my second year. After having been out doing so much sampling last year I haven't needed to do much this year so its been a bit strange. I've completed another large section of work.and hope to add another published scientific paper to the one that was published back in May (please note that I do not expect anyone to pay for access to it but I'm including it below so you can see).  Its crazy to think I'm close to starting my final year, I'm going to need to get all my lab work finished and start thinking about actually writing my thesis, which I'm sure will be a delight...not.

My paper on hawthorn

It's not all work though, after having a number of drum lessons I decided to take a break since I didn't have a drum kit and wasn't progressing much due to not being able to practice. I ended up doing a lot of research and ended up getting a rather expensive but totally worth it Roland electronic drum kit. Unfortunately don't have room for it in the house my dad very kindly built me a wooden platform in the garage which we then put some leftover carpet over. I've been having a lot of fun playing on it and you can plug your ipod in so I've been attempting to play along to some of my favourite songs. At some point I will probably get lessons again.

Sitting at my drum kit

Unlike the good old days of school and my degree I no longer have months off during the summer. I did go to Majorca for a week with my family which was lovely but it now seems like a long time ago. We spent a fair amount of time on the beach which was nice though a bit of a downgrade from the beach in Florida last year. There was however a lovely breeze which kept things from getting too warm and the food was very nice.

Thanks for reading and again sorry for the gap between blog posts. You will need to bear with me, as I've said I write this blog in my spare time and that's when I like to relax. I have some ideas for things to write about so hopefully I will have some more updates soon.

Changing of the seasons

Once again I must apologise for the lack of posts, things have been busy and its been a struggle coming up with interesting topics. For now just to give you a bit of an update I've been busy with my PhD (as always!). Managed to get the work on one of the species I'm working on completed and written up so we are waiting to hear back from the independent reviewers to see if there are any changes that need to be made before it is published. I've moved onto the next of my species and I have to say it is good to be back doing lab work again and feeling productive, that said since I'm only really doing lab work at the minute its rather tiring. Days when I'm doing DNA extractions along with other things are rather long and involve a fair amount of time standing but I guess it will be good for my health in the long run!. This week I had to do a presentation along with other second year PhD students from my research cluster at the university. This lasted 15 minutes along with 5 minutes for questioning. As I've mentioned before on this blog presentations make me nervous, I'm much better than I was when I was younger but still get anxious. One of the reasons that I get nervous is that I'm not sure whether or not people will understand me. This was made worse whenever I recorded myself and what I heard was a lot different to what I hear when I speak. That said there isn't really anything I can do about it other than practice and make sure I speak at a normal pace and as clearly as possible. One of my supervisors had me give the presentation in front of him to practice and he was able to give me some tips. Whatever way the presentations were organised I ended up having to go first...at 9am. Thankfully people did show up and I thought it went pretty well although I may have rushed it slightly.

In other news I've started drum lessons! As much as I love guitar I have always wanted to have a go at the drums and now that I have a bit more time on my hands and now that I can drive myself about it seemed like a good time to start. I've had four lessons so far and I have to admit its been quite challenging. You have to think about what both hands are doing as well as what your feet are doing and it may be that your left hand is playing double beats but your right foot is meant to be playing single beats. Often times it seems like you need to repeat certain things over and over before they finally click and then you wonder why it was so difficult in the first place. The definite highlight so far was when my teacher taught me a simple version of the drums for Muse's Time is Running Out and I played along with the actual song.

Speaking of Muse I was able to go see them live on the 6th March in Belfast which was awesome, you can actually read a review of it here:
Muse Wednesday 6th April 2016 – SSE Arena, Belfast

*The title of this update is a Two Door Cinema Club who I was lucky enough to get to see this week. They put on a fantastic show and I'm looking forward to their new material. You can find my brother's review on the website here

Ironically despite the lack of updates to my own blog I've been in a bit of a writing mood lately, I also wrote an article for  my university newspaper about my love of The Flash tv show:
The Flash-setting-the-standard-for-superhero-storytelling

I also keep forgetting to share the articles that I've written for the university blog, so here they are:
Biodiversity offsetting-a fool's errand
Wonderful Woodland Walks
Perseverance for Preservation

Hope this goes to some way make up for the lack of updates, I'll leave you with some pictures (taken on my not so great phone camera) from the Muse concert. Thanks for reading!

The stage was set in the middle of the arena with two walkways either side

These are the drones, large inflatable ball things which floated around the arena

The opening band Nothing but Thieves were pretty good

Projection of the drummer on one of the screens which hung down

Ch-ch-ch-ch-changes

Well it has been a bit of a strange time for me recently in terms of my PhD. My primary supervisor has left to move to another university. Another person who worked in the lab and who I had gotten a lot of help/advice from is also leaving. The person who I'm most friendly with in the PhD office is finishing her thesis and will also be leaving soon. With all the changes happening in the lab I, along with the three PhD students from the neighbouring lab have had to move into the workspace/office within the lab that I work in. On the one hand this is good because it means I don't have to go in between the lab and the PhD office and it means that it shouldn't be as noisy on the other hand I was settled in the PhD office and this news basically came out of nowhere and was rather vague in the actual details. Thankfully I was able to have talk with the person who is leaving and they have clarified what exactly is all happening so I feel a bit better about it now. All of this hasn't happened at the best time as I'm currently in the analysis/write-up stage of this section of my PhD so I actually need help at the minute having not done any of the analyses before. That said I'm hoping things will settle down soon and once I get this part of my PhD finished I will be able to get back into the lab and start feeling more productive again.

The first time I heard this song was in Shrek 2, the Life on Mars tv show introduced me to the song of the same name, not sure if I had heard Starman before but I loved it in The Martian.

An attempt was made

Well as I write this I feel a combination of feelings, anger, confusion and bemusement. I like to think I'm a relatively intelligent guy but I discovered today that I had wasted a lot of time and effort trying to help someone who I thought had TCS but who it turned out was lying. I won't go into details I still haven't quite got my head around the whole situation. It is very frustrating when you try to do something nice only for it to turn out to have been a complete waste of time.

That said I won't let it discourage me from helping people in the future but obviously I will be a bit more cynical the next time somebody gets in contact with me especially via Facebook...

I have a email address specifically for my blog, feel free to contact me with any questions, queries or comments:
jab_tcsblog@hotmail.co.uk

I also run a facebook group JUST for people who have Treacher Collins Syndrome so if you have TCS feel free to join it:
https://www.facebook.com/groups/168099453326386/

If you do not have TCS you can join one of the other many groups on Facebook, I've listed the main ones below:
https://www.facebook.com/groups/TreacherCollinsSyndrome/?ref=browser
https://www.facebook.com/groups/TCSUK/?ref=browser
https://www.facebook.com/groups/2419901287/?ref=browser


Hope this helps somebody, thanks for reading.

Drive!

Well it's official, I've passed my driving test and I'm now allowed to drive by myself. I'm really pleased to have done it after being nervous about learning in the first place. I'm also really pleased that I managed to do it first time and with only four minors (these are mistakes, you are allowed 15 I think)! For those not aware of the rules in the UK once you passed your test you have to put R plates on your car and you cannot go above 45mph for a year after you have passed your test. I won't be buying a car for myself any time soon as I wouldn't use it enough to justify it so for the meantime I will be sharing with my mum. The weird thing is now I have a bit more free time to myself now that I'm finished my lessons, maybe I'll update this blog a bit more often!