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 I suppose I should start from my school days and explain where I imagined my life going before I developed dystonia. I knew I wanted a career in some sort of creative field since I found working with my hands a lot easier and more enjoyable. I decided to do a furniture design course and afterwards applied for a position as an apprentice cabinet maker. It would take four years to become fully qualified. I really enjoyed this line of work.

I was about a year into my apprentice when I first noticed the power in my right hand worsened, which isn't ideal when you're right handed and starting a career as a cabinet maker. I tried to continue on as long as I could but the power in my hand worsened and unfortunately, because of the machinery, it was not safe for me to continue. I was absolutely gutted and felt like I was back at square one again. I began searching for another path by looking at various courses. I had considered doing a graphic design course after I finished school so I continued on this track. The course involved a drawing module - something that I couldn't do anymore because of the dystonia in my right hand. I was determined not to lose the ability to write and draw so I trained my left hand to pick up the slack. I was embarrassed of how I held my right hand and was worried that people were looking at me, I just became conscious of my dystonia. However I didn't stop living my life.

I continued living my life as a "normal" guy in his 20's, going out the weekends, travelling, going to concerts and just generally having a good time. It was about this time that I started to notice my speech begin to slur and I found it hard to get out the words, I couldn't believe that this was happening and tried to fight it as much as I could. It didn't make a difference - I was getting another onset of dystonia. I didn't know what to think: my head was a complete mess. I found it hard to engage with my friends, lucky for me they were very supportive and never left me out of anything. My mobility also became affected as did my left hand. I found everything very hard to deal with.

I was admitted into Beaumont hospital under the care of Professor Dan Healy where I underwent MRI scans and a number of different tests. I started to attend Physio on a regular basis as well as seeing a speech therapist. Later on in the same year, I spent about 8 weeks in the National Rehabilitation Hospital, where I had Physio, speech therapy and occupational therapy on a daily basis. I really didn't know how to take it all, I was feeling overwhelmed by it all. It took me a few days to settle in. I found it helpful but I was still finding it hard to adjust to the changes I was also angry with my situation - I felt I had lost my independence. I was discharged from the NRH a few days before Christmas, it felt good to be home.

The next 18 months weren't the easiest, I started using a wheelchair. At the time I thought this was a sign of weakness, however I could not have been more wrong. Using the chair gave me the ability to still go out and have a social life without having to worry about my mobility, and there's no queuing when you use a chair - I just roll straight in! I spent the next year or so going to at least three different appointments each week, I started to think what was I going to do with my life seeing my friends moving on with their lives, buying houses, making a career for themselves I kept thinking to myself I'll never have that.

After one of my regular appointments to my consultant he referred me to go back to the NRH. This time I was ready for the help as I was in a much better mind set, I spent about another 8 weeks there undergoing the same therapy as before, I got so much more out of my second spell in the NRH. When I was in the NRH I started searching for courses to do, I knew in my mind that I wanted to design furniture. I decided to apply for a computer aided design course, this two year course gave me the ability to design furniture and get what I have in my head on to paper.

I have also ran a gig night in aid of Beaumont hospital Physio department raising over €3000 from donations made on the night and online, this is something that I want to do again. It gave me a real feel of pride and a feeling of worth. The donations went towards a de-weighing treadmill, which will help people with various types of neurological conditions to work on their gait and overall cardio.

I still get frustrated and annoyed with my disability but I have learned to deal with it by just thinking to myself how lucky I really am. Now I'm 32 I've passed my course with a distinction and I'm starting on a new venture which is designing high-quality dog beds and still continue with my furniture designs. All I really want is to be able to look back on life when I'm an old man and say that I gave it all I had, with no regrets.

 

Richie's Dog Beds

Dogbed

 Richie has designed a beautifully crafted wooden bed for Classy Canines!

His diagnoses of Dystonia and his passion for creative furniture design has lead him to create something wonderful for raising funds and awareness for The Dystonia Society.

The beds are handmade from solid Ash wood and the slats are made from Tulip wood. 

Available sizes: SMALL 45 x 60cm

                         MEDIUM 77.5 x 55cm

                         LARGE 92.5 x 62.5cm

                         X-LARGE 70 x 107cm 

Beds are currently available from http://www.petsatno1.co.uk 

 

 Author and musician Lee Benson performs in memory of his brother Symon at The Jam House in Birmingham on the 24th of January.

This year Disability Awareness Day celebrated its 25th anniversary. Sharon Forsdyke tells us of her experience of the day:

It’s 1991 and I’m preparing for the next leg of my UK coastal tour while struggling with a painful undiagnosed neck condition. Fast forward to 2016 and I have completed my 84th set of botulinum toxin injections for neck dystonia and I’m on a minibus travelling back to the Park and Ride in Warrington. That morning I was the only passenger; now the bus is full of chattering, bag-laden people and I’m shattered, as I’ve been on my feet most of the day.

But what a day! I have been helping on the Dystonia Society stand at the 25th Disability Awareness Day at Walton Hall Gardens. Our stand was well placed in Marquee 4 beside the Lyneal Trust, which offers canal based holidays for people with disabilities, and opposite the Multiple Sclerosis stall.

Initially our visitors were event volunteers, including Janet Ireland, Information and Advice Officer at the Brain Charity based in Norton Street, where the Liverpool dystonia support group hold their meetings.

Around 9.30am the public started to trickle in and soon there was a steady flow of people asking inquisitive questions about Jane Hewertson’s marvellous display boards.

Jane, Pat Rathbone and I took it in turns to man the stand and wander the gardens, collecting leaflets and connecting with some of the other 250 exhibitors whilst proudly wearing our brightly coloured dystonia t-shirts.

We took a few donations, sold some merchandise and engaged with 74 visitors, some allied to the medical profession, including physios, occupational therapists and nurses. Many had never even heard of dystonia.

Roll on D.A.D 2017!

New research shows more than half of GPs feel people with neurological conditions “do not receive a timely diagnosis”

The Neurological Alliance, of which the Dystonia Society is a member, has conducted a survey of more than 1,000 GPs across the UK to test their views on diagnosing and referring people with neurological conditions.

The survey found that:

  • 85% of GPs in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
  • 59% of GPs believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
  • The large majority of GPs in England feel that they could benefit from further training on identifying and managing people presenting with neurological conditions.
  • Fewer than half of GPs (47%) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis (MS).
  • The survey did not specifically ask about diagnosis of dystonia, but instead asked about some of the best known and most common neurological conditions like MS. The findings, that many GPs were not even confident of diagnosing MS, suggest that very few would be confident in diagnosing a rarer condition like dystonia.

The survey also highlights the delays in getting to see neurologists, and the concerns about the availability of local services, all of which reflect the evidence we receive about dystonia.

The Neurological Alliance has pulled their survey into a report, a full copy of which can be found on their website.

 

Neurological Alliance GP Survey

New research shows more than half of GPs feel people with neurological conditions “do not receive a timely diagnosis”

The Neurological Alliance, of which the Dystonia Society is a member, has conducted a survey of more than 1,000 GPs across the UK to test their views on diagnosing and referring people with neurological conditions.

The survey found that:

  • 85% of GPs in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
  • 59% of GPs believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
  • The large majority of GPs in England feel that they could benefit from further training on identifying and managing people presenting with neurological conditions.
  • Fewer than half of GPs (47%) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis (MS).

The survey did not specifically ask about diagnosis of dystonia, but instead asked about some of the best known and most common neurological conditions like MS. The findings, that many GPs were not even confident of diagnosing MS, suggest that very few would be confident in diagnosing a rarer condition like dystonia.

The survey also highlights the delays in getting to see neurologists, and the concerns about the availability of local services, all of which reflect the evidence we receive about dystonia.

The Neurological Alliance has pulled their survey into a report, a full copy of which can be found on their website at www.neural.org.uk.

Earlier this year we announced that the Dystonia Society’s seed funding for a new research project has been awarded to Professor Ian Loram, Professor of Neuromuscular control of Human Movement at Manchester Metropolitan University, Faculty of Science and Engineering. Below he explains his project, “A clinical tool for real-time analysis and visualisation of cervical muscles for cervical dystonia”:

“The most frequent treatment employed in treating focal dystonia is botulinum toxin. For it to be very effective, the toxin needs to be injected into each “dystonic muscle”. Identifying each muscle affected by dystonia is at present only achieved by observation, examination or rarely via electromyography (EMG). Unfortunately, the neck contains some of the most complex muscle groups in the human body, with multiple muscles performing similar movements, with some muscles affected being too deep to feel or see during examination; making assessment by physical examination and EMG sometimes challenging.

This project aims to test and further develop our new clinical tool that will identify all muscles affected in neck dystonia, and create a real-time image of the structure and activity of these muscles. Ultimately this could enable an injector to scan the neck using an ultrasound probe and view, in real-time, a three-dimensional image of the neck muscles. The different muscles will each be clearly marked so that those muscles affected by dystonia can be accurately identified, injected and monitored.

To test this technique we are currently working with people with cervical dystonia, alongside a group of unaffected participants. This study involves using MRI and ultrasound imaging to build and refine our models of neck muscle structure and activity, to identify patterns associated with cervical dystonia that are not present in unaffected participants.

This tool will enhance the delivery of treatments such as botulinum toxin and physiotherapy, and provide treatments better targeted to the individual with dystonia; enhancing quality of life for those receiving treatment.”

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