Falling Apart at the Seams

 Loads of things to let you know, but so little time.

First of all a little self promotion, as the following paragraph is from Ian Lucas MP’s monthly CLP report:

I have been working alongside Nathan Davies, a party member here in Wrexham, over the changes the Government has made to the Independent Living Fund. The debate included MPs from Northern Ireland, Scotland, and England as well as Welsh Labour colleagues Susan Elan Jones and Jessica Morden, and it was notable that each part of England criticised the changes the UK Government has made to the administration of the successor to ILF. I was able to pay tribute to the work Nathan has been doing – and to highlight his front page appearance in the Leader that morning. I was not particularly impressed with the Minister’s response, although I will take her up on her offer to meet to discuss my concerns. 

The following video accompanies this text:

Independent Living Debate with Ian Lucas

I think we have established how brilliant I am, but this awesome individual is also struggling at the moment with the effects of Friedrich’s Ataxia. This cruel disease is progressing quickly and really starting to affect my swallowing and speech. I have particular problems before food as I am regularly coughing and choking uncontrollably on my own saliva as I anticipate my food.

Another problem is with my speech. I am afraid that I am beginning to slur more than I use to and I just cant bear listening to myself on TV or radio as the voice that I hear is not the one that I hear in my head when speaking. I really should do something about both problems, but as I am so busy trying to save WILG, I am letting my health slide.

Earlier this week, I received a phone call from the local hospital asking me to come in for a camera down my throat following discussion with my GP about my difficulties choking. I chose to decline there kind offer as I am so busy with other things and cannot afford to lose my voice or become ill at the moment.

I received a newsletter from Ataxia UK today informing me of a speech and language therapy course that they are running in association with the University of Stirling. The second are all taking place through Skype so they are open to everyone. I really should take part and I would like to if only I had the luxury of time to spend looking after myself. The Tories and Wrexham council are ensuring that this is just not possible at the moment.

1Study Advert, Version 4.0, 05 January 2018

Speech Therapy Treatment Study for Friedreich’s Ataxia

Communication problems are a frequent consequence of ataxia. Many people report a decrease in quality of life as they can impact on our social relationships, employment opportunities, etc. Yet there currently is no effective treatment for speech problems that has been properly evaluated, and there is uncertainty amongst clinicians on how best to support people with ataxia with their communication.

We are looking for participants for a study investigating a new treatment approach for speech problems. There is good evidence that this approach is effective for Parkinson’s Disease and we  want to find out whether it can also help those with ataxia. This study is funded by Ataxia UK and aCHaf and carried out by researchers at Strathclyde University in Glasgow.

The treatment will be administered via Skype in your home and there is no need to attend a clinic. It will run for 8 weeks, with two therapy sessions per week and homework practice for the other days. A typical LSVT therapy session will involve practising a good voice production on a series of long ‘ahhhs’ focusing on controlling the loudness of your voice, as well as the pitch. We will then try and transfer these skills to speaking by reading out individual words and functional phrases, working our way up to longer stretches of speech over the course of therapy. As treatment will be carried out in English, it is important that you have Basic English speaking and reading skills. This protocol of activities will be the same for each session, but the materials will increase in complexity. Homework exercises will follow a similar protocol to the therapy sessions and will take about 30 minutes. Ideally, we would like you to practise at least another four times during the week.

We will measure how much your speech has changed after treatment, and also ask you what youthought of the therapy approach. To do this, we will perform two short assessments before and two after treatment, and also do an interview. This will again be done via Skype. Altogether, the study will take about 6 months.

To be able to take part, you need to fulfil the following criteria:
􀁸 Have a confirmed diagnosis of Friedreich’s Ataxia
􀁸 Experience speech or voice problems
􀁸 Not have any other neurological or speech problems
􀁸 Be aged 16 or over
􀁸 Have access to the necessary technology (good internet connection, access to a computer

that allows you to use Skype and has a functional microphone input)
􀁸 Have Basic English speaking and reading skills

If you are interested in participating, please get in touch with us by phone or email and we will give you more detailed information. Please contact:

Aisling Egan
Speech and Language Therapy Unit
School of Psychological Sciences and Health
Strathclyde University
Tel: 0141 548 4393
Email: aisling.egan@strath.ac.uk

I should probably email Aisling to find out more information.

I cannot end this blog without mentioning the two events that have on this week.  The first of which is a #SaveWILG Art exhibition at Theatr Clwyd in Mold, north Wales. This event runs from January 24th to February 12th and includes art, poetry and pictures from a wide range of disability activists and artists. The official media day for this is on February 2nd. I am very proud of what we have put together in such a short space of time.

A leaflet for the Theatr Clwyd event has also been produced by Heather Wilson.

SaveWILGSideA2

SaveWILGSideB2 copy

Our North-East Wales WLG/M comrades are centrally involved in organising this great event. It will be a fantastic occasion, but we need to get as many people there as possible! This is a day of entertainment and information. There is alcohol, soft drinks and food on sale at the venue and there is full Disabled access and a Disabled toilet.  The least we hope anyone can do is promote this event by sharing the flyer and printing it off and putting around your area, disability groups, CLPs etc etc. Raising awareness of the event is crucial to the campaign’s success!The event is FREE to all. Please do help in any way you can.

Schedule

 

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