Category Archives: Blog

SDN’s is seeking members to contribute to the blog. If you have a burning issue or you want to share something with other members please contact us.

Wheel’s Wonderings contributor is written Ian Pugh a disabled teenager living In Shrewsbury.

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Ian’s Blog – Wet Age-Related Macular Degeneration

1 – Introduction

I thought I would write a blog about Wet Age-Related Macular Degeneration (Wet AMD) and what it is like living with this condition, with a view to raising awareness about it.

I’m not an expert on the condition itself, other than being an expert in how it affects me personally !

In writing this blog, I’ve borrowed heavily on information provided by the Macular Society (www.macularsociety.org) of which I am a member. Their leaflets give some very good explanations of the condition itself and also about a variety of related topics – more information about the Society will be given in a future blog instalment.

I have also used some information from the Royal National Institute for the Blind (RNIB) (www.rnib.org.uk)

 

2 – What is AMD?

The macular, which is about the size of a grain of rice, is located in the retina at the back of the eye. It gives us our central vision, much of the colour vision and also the fine detail of what we see.

Age related Macular Degeneration

It also has a very high concentration of photoreceptor cells – these are the cells that detect light – they send signals to the brain which then interprets them as images.

The rest of the retina processes our peripheral vision.

Although there are different types of macular disease, they all make eyesight blurred or distorted, resulting in progressive and sometimes quite severe gaps in, or loss of, central vision.

It isn’t painful and affects the vision used when looking directly at something, for example, when reading, looking at photographs, using the computer, watching television etc.

I have Wet Age-Related Macular Degeneration, which is one of the two types of AMD. It occurs quicker and is more aggressive than the dry type – abnormal blood vessels grow in the retina, which then bleed and scar the macular – this is what causes the rapid loss of central vision.

Wet AMD can be treated with injections of Avastin ,Lucentis or Eylea in the affected eye – I am having Eylea injections in my left eye.

Although Wet AMD can be treated, it cannot be cured.

Dry AMD involves slow loss of central vision over a number of years and there is no treatment for it at the moment. However, Roche are currently undertaking phase three trials of a potential treatment – lampalizumab.

Before I had my first Eylea injection, the doctor told me that about 30% of people who had the injections noticed some improvement in their sight (this would be over a varying number of injections).

For the vast majority of people, the injections stop the sight getting any worse, but in a small number of cases, the injections actually make it worse – but then there is always an element of risk with any procedure.

He did say though, that if I didn’t have the injections, my sight would definitely get worse anyway.

I have had Wet AMD in my right eye for a number of years and for a few months now, in my left eye too.

I can’t have injections in my right eye as there is too much scarring, although I did have Photodynamic Therapy (laser treatment) several years ago when the Eye Infirmary was at Chapel Ash in Wolverhampton.

Kelda Wood with Sharon Davies

Kelda Writes … “but it’s been a lesson to me just how much I want this..”

More gains have been made this week. I’m getting some real power in the water now and I feel like the penny’s finally dropped and I’m attacking every stroke. I was working at Battle Back at the start of the week, so it’s always tough going, getting up at 5am to train before work, and then hitting the gym for a good session in the evenings too makes it a long day.

I’ve had to really manage the niggle in my shoulder during the week, I was getting pretty concerned by Wednesday/Thursday. Managing my shoulder and my tiredness levels this week hasn’t been easy, but it’s been a lesson to me just how much I want this. It would’ve been very easy for my head to go down…it didn’t, and I pushed through both the shoulder and the tiredness and came out of the week feeling much stronger as a result – both mentally and physically! Another big learning curve.

I’ve managed to get access to the English Institute of Sport Gym at The National Sports Centre at Lilleshall, so this will be a big help – especially as I’m working there all next week. This means another week of early mornings and late nights, but hopefully I can still keep making the gains, both in strength and fitness now I can get into this gym.

I’m still having to eat over 185g of protein a day, but I’m starting to see a difference!

I’m looking for a sponsor now too – things are getting serious, and I’m hoping to find a company that might consider supporting my journey. I’ve just got to find the time to write some letters!

I had some exciting news on Thursday too…but I’ve got to keep it to myself for now!!:-)

Kelda Wood with Sharon Davies

Congratulations Kelda Wood

All of us at SDN would like to congratulate Climbing Out & all the hard work that Kelda does for it. The photograph shows Kelda collecting her award from Sharron Davies MBE at the Energize 2014 Awards. We wish her & all contestants well at the West Midlands Community Sports Awards on the 27thNovember

 

 

 

9th November Kelda writes….”Training is hard….injury problems …filming & an Award!”

 

 

I’m starting to think my life is getting too surreal for words! It’s been another eventful week. Training’s been hard, we’re still in the hypertrophy phase, which means we’re really pushing our bodies in attempt to get some big gains in muscle mass and strength over the winter. By Friday I was exhausted and my body was so sore I couldn’t even bend down to put my socks on! It’s difficult to feel good on the water when you feel so sore, but I’m hoping it’ll all come together as my body learns to cope.

I’ve had a little injury niggle this week too, which has showed me that I’m not invincible and I’m going to have to look after myself if I’m going to survive the whole process….something that I’m still finding difficult as I try and juggle training, Climbing Out, Battle Back and all my animals. I’ve always worked on the motto “there’s plenty of time to sleep when you’re dead”…… but I’m learning that sleeps pretty important to give my body the recovery time. I think it’s time to take a look at how I move forwards from here….but I’m not quite sure what to do about it!

The BBC were at the centre filming us training on Friday, we’ve been told to expect a lot of this leading up to Rio 2016 as were currently the leading nation. It was all pretty surreal as they had smoke machine’s going and everything….not the normal occurrence on a cold and wet training day at Nottingham!

On top of that, it’s been a great week for Climbing Out. We finished 3rdin the Lloyds Bank Community Fund Awards on Tuesday, winning £1,000 and then followed up by winning the Community Project of the Year at the Energize Awards on Thursday evening. I’m incredibly proud of the recognition Climbing Out is now getting, and hopefully this will enable us to reach even more young people in the future. We now go through to the West Midlands Community Sports Awards on the 27thNovember. Fingers crossed!

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2nd November Kelda Writes …”What an amazing week”

What an amazing week! We had a 24hr stay in Sweden to take part in testing regarding classification in preparation for Tokyo in 2020, it was great fun and really interesting to see how the system works.

As soon as we got back to the United Kingdom, it was straight back into full training and I’ve made some huge gains this week…on Thursday I was told I was paddling better than girls in the women’s final at the Worlds this year. That is just so incredible to hear, and for the first time in my life I’m starting to actually believe in myself. It’s given me so much motivation to keep working and training hard, the whole process is suddenly starting to feel very real and not just a dream any more – exciting times! :-)

Ian Roberts

Pop Up Chat Together

Our own Outreach Officer Ian Roberts took the opportunity to go to his first “Pop Up Chat together” last Saturday, not only did he use this opportunity to promote our work. Ian shares his experience with you here…

This is an event held on the first Saturday of each month from 11:00 until 13:00 at Optimum Joy, 81 Wyle Cop, Shrewsbury, SY1 1UT.

You don’t have to stay for the whole two hours – you can pop in and out as you wish.

It is a chance for people with mental health issues, and others, to meet up and have conversations with friendly folk – the chat doesn’t have to be about mental health – it can be about anything at all !

Pop Up Chat Together basically provides an opportunity to meet up with friendly and understanding people of all ages over tea, coffee or whatever – and maybe make some new friends into the bargain.

It isn’t a group in the formal sense at all – there isn’t a membership requirement; there isn’t an agenda or anything like that; no guest speakers – it is just a chance to get together and have a good old chinwag.

I attended for the first time on Saturday 1st November and really enjoyed it – the only person I knew before I went was Jim Hawkins.

I was talking to two Young Health Champions and another young chap and I also spoke briefly to a few other people.

There were quite a few there – over 20 – and it was the largest attendance out of five Pop Up Chats.

I hope to attend the next one on Saturday 6th December – hope others will join me.

 

Ian Roberts

SDN Outreach Officer – Telford

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26th October Kelda Writes: The great as well as the not so great Sweden Weekend

The squad are off to Sweden this weekend to take part in some research trials, it’s a bit of a bind as it interferes with training, but it means the coaches will get access to the data long before it’s published, so hopefully it’ll be worthwhile.

It’s been a difficult week fitting in training around work….sorting out my work/training balance is proving to be one of my biggest challenges, but I’ve had some good gains in the gym so looking forward to getting back on the water next week and hopefully getting some improvements.

I found out this week I’ve got some sponsorship from the Holme Pierrepont Leisure Trust too, so things are looking good!

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Hub Blog Two: Week Three of the Build

Monday 20th October

Well things are, as you might expect, moving on apace. Though now that the walls are up there is this rather misleading impression that it is close to completion and there is little movement as builders and electricians are obscured by the walls as they work away at their allotted tasks.

Tuesday 21st October

I have to say that the excitement rose a little today as all the plumbing and porcelain arrived for the sinks and disabled toilet. All these little steps in the build make me feel that there is light at the end of the tunnel (no pun intended). Each of the rooms is beginning to take shape and I can imagine their layout with desk, or audiology booth, or easy chairs. Our conference/meeting/training room will be a good sized space and I am starting to think about how I can promote it to potential users. 

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Wednesday 22nd October.

Neil Davda, our Grants Fundraiser, helped me carry these ‘recycled’ shelves I managed to get donated, down the High Street to the Hub.

 

Salvaging shelving

The Womble Strikes Again

Thursday 23rd October.

There is a lot of crashing and bagging going on around me today at the Hub as the plumbing is being worked out and I am upstairs finishing off the shelves ready to receive stock and other goodies. Whilst I work away I am trying to think of the layout and decorating of the reception area, rooms and café. With our link with international projects in Africa I am hoping we can have some colourful fabrics to brighten the space and some large plants to break up the space. Both of these elements will make the Hub a venue people will want to be in, but will also help in absorbing noise and soften the space.

Friday 24th October.

I am starting to fill our storeroom upstairs at the HUB with items that I have managed to get donated or purchased that we will need when the shop-fit has been completed. The shelves are coming in very useful.

Today I received a delivery of furniture, some stackable butterfly chairs for the meeting room and armchairs for the treatment rooms. Heather from The Links Café was also there to receive some comfy chairs and few tables for the café and also brought in some crockery (which is sitting inanticipation of lashings of cake and pots of steaming tea, I think Heather is wishing it was a full cup she is holding!). All of these elements really do make the whole process start to feel real.

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Heather

Now, where is the rest of my list of things I need to arrange, source, buy, collect, build, or just tick off as completed.

What a great feeling when I can sign off on one more item on my ‘opus magna’.

Lynda Jones pic

Highs’n’Lows of creating a Shropshire Mental Health Charity

Moving back to Shropshire late ’90s was like hopping onto Dr Who’s Tardis back in time!

The way homeless were viewed by certain Salopians was appalling!  Describing homeless on our Streets ” as the cancer of our Society.”

So; I decided to do something about it it. Thus in 1999 Shropshire Independent Advocacy Scheme was born spending first 3 years of it’s development in my Shrewsbury Town Centre flat.

Initially it was a project dealing with our local homeless Street People with a personal view that many folk seen on our streets had Mental Health issues often ‘masked’ under the outwardly anti-social behaviour some portrayed.

Obviously as a safeguarding factor I didn’t see my homeless clients in my flat. So could be seen at their regular haunts such as the local park; outside on a Library bench; where they busked/begged in Pride Hill. Shrewsbury CAB were brilliant! Offering me a safe environment enabling me to talk more in depth and in total confidence with a client. 

The Roy Fletcher Centre Cafe got used to me bringing in a homeless client for beans on toast and a cup of tea, building trust, creating a rapport. However it wasn’t long before I was getting referrals from: 

  • Clients who were unhappy with what they felt was the lack of Mental Health Aftercare provision. 
  • Clients within psychiatric care. 
  • Teenagers in Care who felt let down, rejected by a constant stream of Social Workers all with different approaches on ‘what is best for the child’ often forgetting that particular youngster’s own needs. 
  • Clients who were victims of domestic violence. 

Between beginning of 1999-mid 2000 we had seen 200 people. Using my own front room as an admin office, and only on rare occasions receiving a financial handout. I felt like Oliver Twist bowl in hand, asking for more.

 

To be continued in next Baggins Blogg

The Hub

The HUB, by Paul Coope, Manager Signal Hub

Shropshire’s first “Hub” devoted to hearing- and communication-related services 

Week One:

Everyone here at Signal is anticipating the shop-fitters coming in and starting on our new HUB this week and I am looking forward to watching its progress from chrysalis to butterfly.

The space is large, open and rather empty at the moment.

Full of promise, a bit like a blank page just waiting to be drawn on, what will the finished image be?

Wednesday 30th September:

We have lift off.  The shop-fitters have arrived today and began moving in the first elements of our fit-out.  As I stand in the open space there is a hive of activity all around me as all the timbers for the stud walls and a large stack of plasterboard arrive. For my first week with Signal as Hub Manager this is all very exciting, equipment, tools, and materials are all here, just sit waiting for the action to start.

Friday 2nd October:

As I arrive at the HUB the today I can see the HUB starting to take shape. Stud walls stand like an open labyrinth along the back of the HUB inviting me to step through the spaces where walls will eventually form a solid barrier. I can feel the elements of the shop-fit starting to come together and now see the paper plans growing into a solid structure. 

There is a lot of interest from people passing the front of the shop, with many stopping to see what is going on. The whole mall is coming to life with different users. 

Week Two:

Each day seems to bring on a new perspective to the Hub, today I can see the builders are fixing plaster to the framework, the whole space is in organised chaos. I can start to visualise where desks and furniture will be placed and can give some thought to how we will decorate the space.

A big note of thanks at this point goes to the generous support from Shropshire County Council, who are donating surplus furniture to Signal for the project. Rob Jones, Property Operations Manager for the Council has been able to source desks and other items for The Hub.

Our other partners are also starting to get excited by the changes. Heather and Cheryl who will have the ‘Links Café’ in the HUB have started to think about their space and we are working together to ensure we have a pleasant spot to drop in for a cup of tea and coffee.

Thursday 9th October:

The Electricians and IT crew are in today and the whole place is abuzz with workers. It’s a bit like watching an intricate choreographed piece as everyone moves around the HUB completing their allotted tasks.

By the end of the day we have wires sitting in quiet anticipation waiting for the final fit-out when all the walls, skirting and decorating are completed. The ceiling lights have been moved to suit the room configuration and I can start to appreciate what has been achieved in such a short space of time.

We had a visit from Ruby Hartshorn (pictured above) from Shropshire Disability Network this afternoon and we were able to talk about what we hoped to achieve with the HUB and give her a brief overview of the work so far. We have made sure that access within the HUB is user friendly for all and a comfortable area to move around. 

Friday 10th October:

It’s a day to take stock of the past week and a half’s frenetic work in the HUB. I can see the main form of the place now, though one room is still to be plaster boarded.

I have a meeting here today with Andy Bleach from Shropshire Sensory Impairment Team to show him the venue and discuss working together in the Hub.

I stand in what will be our reception area and can see we are moving ever closer to completion. What we need now are volunteers who will help us prepare for opening in November! If there is anyone out there who is interested in volunteering at the HUB or would like some more information about the opportunities we will have there please contact me and we can meet to talk about our new venture. We will be holding an information day there to let potential volunteers know more about what we hope to do at the HUB, answer questions and have a chance to chat informally to everyone. 

Week Three:

Monday 13th October:

More deliveries today, plasterboard for the second skin of the walls and huge bags of soundproofing insulation to go inside the walls.

There is ebb and flow of materials filling the space, rather like a tide, one moment the whole HUB is full of building materials and they decrease as they are used, only to be replaced by the next batch.

All the rooms will be insulated to help to reduce sound so that the Audiologists and others who use them will have a specially designed quieter space to do their assessments in.

We will also be installing a specialist audiology booth provide by the NHS Audiology Department so that hearing tests are undertaken in a controlled environment.

Things are moving more steadily now as we complete the work on and in the rooms. While off site we source equipment and furniture to complete the HUB. 

Tuesday 14th October:

I managed to source some free carpets today for our back of house area in the HUB and have earnt the nickname ‘Womble’ for my resourcefulness. I’m sure that is a term of endearment from my colleagues! 

The second skin of plaster-boarding is going onto the walls today to help control sound in all the rooms in the HUB. You now get a real feel for the shape of our new centre, with the reception and café area looking very bright and airy.

Wednesday 15th October:

The insulation is being cut and packed into the wall spaces, and two rooms have been completed today, another step closer in the build.

I have now got to start thinking about how we will decorate, furnish and lay out the main foyer area. Will it be big colourful fabric prints on the walls, or paintings and pictures of our projects. As I mentioned at the start of this blog, it’s a blank page, or should I say, palate.

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Sweden Calling

My body hurts!

It’s been a great week training, but we’ve been pushed hard and my body knows it!!

I’m feeling strong though and there’s been some huge gains made with my paddling. We’ve changed my technique this week, and although it feels hard at the minute, I know it’s going to enable me to go faster in the long run.

We had a nutritional workshop this week and I’ve been put on a high protein diet too, 185g a day, that’s the equivalent of around 10 chicken breasts a day….I’ll be looking like a chicken by the time I’ve finished!! We were told on Thursday that the squad has got to go out to Sweden next weekend to take part in some trials – never a dull moment!!