“Filming My Father: In Life and Death”

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On February 1st 2017, UCLU Giving Voice held a documentary screening of20170201_172127Filming My Father: In Life and Death“, an award-winning documentary providing an insight into one family’s battle with Motor Neurone Disease (MND).

MND is a progressive neurodegenerative disorder that prevents the motor neurones in the body from working properly. The MND Association reveal that up to 5,000 people in the UK are living with MND at any one time, and it kills more than half within 2 years of diagnosis.

Your motor neurones send messages to your muscles and are therefore involved in day-to-day activities without us even thinking about it, such as eating and breathing. Whilst the effects vary from person to person, MND leads to weakness and wasting of muscles, causing loss of mobility in arms and legs, and difficulties with speech, swallowing and breathing.

The evening opened with a talk from Steven Bloch, a senior lecturer at UCL, who discussed the role of a Speech and Language Therapist working with people with MND. 

Speech and Language Therapists are key in providing support and intervention surrounding progressive swallowing and speech difficulties with MND. They work on maximising existing speech abilities as well as preparing for the future by encouraging legacy work and the potential for recording a client’s voice for use of alternative electronic means of communication. They also assist the client’s support network with their communication and interaction with their loved one.

As seen in this documentary, people with MND will likely require an Alternative Augmentative Communication system, such as an iPad or an eye-tracking device, to communicate when they are no longer able to produce verbal output. The Speech and Language Therapist would be required to advise around this topic, as well as train clients and families how to communicate with this new equipment.

As the muscles in the mouth and throat weaken, the Speech and Language Therapist will also be required for swallowing assessment and review. They will monitor the client’s ability to swallow and will make recommendations on their diet. This may mean having softer, pureed food, or could eventually mean advising that a tube is inserted directly to the stomach so that the client can be fed via a percutaneous endoscopic gastrostomy (PEG) tube, eliminating the risk of any food or fluid entering the lungs due to a weak swallow.

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Fraser sporting a Giving Voice t-shirt with our Vice President, Sophie, and Social Secretary, Mahie.

We were lucky enough to have Fraser present on the evening to answer some questions after people had watched the documentary. Fraser created the majority of the content for the documentary by filming his father’s journey with MND over the years, and was able to provide us with amazingly honest and insightful answers to the many questions asked.

Overall, the event was a great success. The Motor Neurone Disease Association were kind enough to provide us with lots of resources for the event, and we provided every audience member with information sheets about MND, as well as popcorn and a bag of sweets.

From ticket sales and donations, UCLU Giving Voice raised £200 for the Motor Neurone Disease Association (MNDA). 44 people attended, 28 of which were UCLU Giving Voice Society members, but also staff, speech and language therapy students, students from other courses and friends showed up to support this event. 
20170201_191159The event was successful at not only providing people with the opportunity to see this amazing documentary, but also providing them with the unique opportunity to discuss their immediate thoughts, feelings and questions about the battle with MND with Fraser, and we received some great feedback.

“It made me feel appreciative of my family and how lucky we are. I learned about the impact that degenerative diseases can have on other family relationships and how it can push people apart at the same time as bringing them together”

“I was very moved by the film, it made me really think about life and death and what really matters. It was quite painful to watch but I’m definitely glad I did. I didn’t really know much about MND before so it taught me about the disease and its progression. It gave me an insight into what it’s like to have MND but also how difficult it must be to see a family member suffering.”

“It highlighted the impact of the role of the family in the care of a loved one. A patient shouldn’t just be seen as a patient, supporting the family in the how to communicate with the patient is equally as important”

– Feedback from the event

Many thanks to Fraser for being part of the event, and to everyone who attended and donated. Based on information provided by MNDA, here is what your £200 could be going towards:

  • 20 information packs for newly diagnosed people with MND
  • 6 adapted cutlery sets to help someone with MND continue to feed themselves
  • Funding an MND researcher for just over a day
  • Running the MND Connect support information line for 2 hours
  • Funding laboratory equipment for 4 day’s vital research into finding out the causes of MND
  • Producing 40 copies of ‘So what is MND anyway?’, a guide for young people affected by MND

Click here to see some of the highlights from Fraser’s Q&A session, after showing the documentary.

For the most recent updates following the filming of ‘Filming My Father: In Life and Death’, like the Facebook page.

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UCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

Documentary trailer:

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Winner of the UCLU Giving Voice Raising Awareness Challenge!

Back in September, armed with our  ‘Challenge Bag’, the UCLU Giving Voice committee encouraged the society’s potential new members to take on various challenges to spread awareness of speech, language, communication and swallowing needs.

Some of the challenges included hosting a dinner party with a communication friendly menu, tweeting 3 messages raising awareness of speech, language and communication needs (SLCN), and holding a film night with a movie relating to speech and language therapy, for example The Diving Bell and The Butterfly.

Here is a video of Hollie Wright taking the challenge of videoing herself explaining how to make a sweet milky tea backwards to highlight the additional processing demands for those with SLCN.

I didn’t expect my challenge to be straightforward, but I certainly didn’t anticipate it would be this difficult. The thought of finding it that tough to communicate ALL the time is not a nice one – Hollie Wright

The prize for the winner of the challenges was a beautiful piece of art by Sue from Headway Cambridgeshire, who is living with a brain injury. Sue created her artwork using a Batik style of painting, which uses wax to prevent dye from penetrating the cloth, leaving “blank” areas in the dyed fabric.

And the winner was…. Fionn MacLauchlan! Fi took the challenge of raising awareness of dysphagia by eating a pureed diet for a day and documenting it on social media.

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It was actually really hard trying to plan the sorts of food I could eat and it affected my social plans for the day too. I had porridge, scrambled eggs and soup. It was really bland and I can’t imagine doing this everyday. Being on a puréed food diet would be a lot more difficult than you think, and would take a lot of creativity and effort to keep it interesting. – Fi MacLauchlan

Congratulations to Fi! And well done to everyone who took part. Speech, language, communication and swallowing needs are viewed as ‘hidden disabilities’, as they are often not visible or obvious to other people. For this reason, it is important that we raise awareness of these difficulties in any way we can. Social media is a powerful tool to enable us to share our experiences: together we can hopefully shed light on these ‘hidden disabilities’. If you see an interesting tweet, or an informative Facebook video about SLCN or dysphagia – SHARE SHARE SHARE! Let’s get the word out!

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

Merry Christmas from UCLU Giving Voice!

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Twas the 9th of December, and all through the cloisters,
Not a creature was stirring, no festive carol voices,
But with heads put together, and thinking caps adorn,
THE GIVING VOICE CAROL CONCERT ROCKED THE CRUCIFORM!

Tinsel was hung around the room with glee,
As choirs gathered to get themselves ready,
ALAS, what is this? The pianist is delayed?
No worry, a quick jig of the setlist was made!

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The crowds flooded in, about 150 or more!
Mince pies were nibbled as the mulled wine was poured.
The festive spirit began to fill the air,
As everyone sat to enjoy what we’d prepared.

First up: Downright Excellent, who sang Rudolph’s song!
Thanks to the kids and parents for coming along.
Next up was the talented UCLU Sign,
Whose performance was, quite simply, divine.

The Giving Voice choir joined the stage for the first time!
And the audience was eager, after learning some signs.
Wonderful Christmastime and Merry Christmas Everyone,
We sang and we danced, along with Makaton.

And last but not least, it was time for Sing For Joy!
The pianist arrived just in time for us to enjoy,
Such energy and charisma, their choir was enchanting,
They even got everyone up on stage dancing!

So thank you to all, who attended with a smile,
Your support and your enthusiasm made it all worthwhile.
We raised awareness of Giving Voice, PD and Downs Syndrome,
We hope you have a lovely Christmas all tucked up at home!

dsc_0484Alongside the carol concert, we ran a Downright Excellent volunteering programme and UCLU Giving Voice were able to support them in raising £260 through Christmas card sales. You can find out more about our visit to Downright excellent on our previous blog post. Downright Excellent are a wonderful charity that provide therapy to children with Down syndrome. It was great to have them in our carol concert this year and it was lovely to have an impromptu speech from one boy telling the audience  that he “loved his mum” and that “she looked very pretty” – I’m sure that made her night!

We were very lucky to have Sing For Joy Bloomsbury return for another year. Sing for Joy is a choir for people with Parkinson’s Disease and similar conditions, their friends and carers.  One person in every 500 has Parkinson’s, meaning around 127,000 people in the UK. Everyone’s experience of Parkinson’s is different: the symptoms someone has and how quickly the condition develops will differ from one person to the next. Their performance raised the roof and certainly got everyone in the festive spirit!

Thank you again for everyone who took part in the Giving Voice choir. We were lucky enough to have 30 Giving Voice members take part in our choir this year and we were so impressed by your devotion and enthusiasm in the event.

Thank you also to everyone who attended the event as spectators.  There was huge variety of people in the audience: family and friends of those performing, society members, undergrads and post-grads, and UCL staff. We were impressed with how many people in the audience got involved with the UCLU Giving Voice choir performance after being taught the signs for the chorus – The Singing Hands ladies, who were our inspiration for the performance, even commented saying that it was a great example of active not passive learning.

We have really enjoyed our first term as the UCLU Giving Voice Society, and look forward to many great things we have planned for 2017!

Have a very merry Christmas and a happy new year!

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

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Downright Excellent Christmas Fun

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On Saturday 3rd December 2016, a group of (very keen!) Makaton signing, Christmas-jumper-wearing UCLU Giving Voice members and committee members visited the lovely children at Downright Excellent, as part of a volunteering project.

This is the second year that we have been involved with Christmas festivities at Downright Excellent, and once again it was an overwhelming success. It’s questionable who had more fun – us or the children!

Downright Excellent are a wonderful London-based charity that provide therapies to children ages 0-11 with Down syndrome (speech and language therapy and occupational therapy).

Using a choice board, the children were encouraged to take turns and make choices about which songs the group would sing and sign to next. Although a clear favourite was Let It Go! (Frozen), other festive choices included:

Rudolph the Red Nose Reindeer
12 Days of Christmas
Jingle Bells (complete with musical instruments!)
Wonderful Christmas Time
We Wish You a Merry Christmas

It was very overwhelming to see not only how engaged the children were with both singing, signing and leading the songs, but how much fun they were having; whether they were laughing at some of our not-so-accurate signing, out-singing us, or generally just having a great time, there were smiles all round!

We all came away from the morning in absolute awe: it was fantastic to see how much ‘voice’ each and every one of the children had to give. It was such a success, we were invited to support the children in the centre with some singing for their Christmas Party!

If you would like to get involved with our next visit in Spring 2017, or would like further information about volunteering opportunities at Downright Excellent, please do not hesitate to contact us!
Good singing and signing skills are definitely NOT required…

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Find out more about Downright Excellent here

UCLU Giving Voice “Gave a Hand” and Baked for The Stroke Association

IMG-20161026-WA0023.jpgOn Wednesday 26th October, UCLU Giving Voice organised a bake sale to raise money for The Stroke Association  during their “Give a Hand and Bake” week. We decided to support The Stroke Association and help raise money to contribute towards vital research into preventing stroke, and to contribute towards better care for stroke survivors.

Communication problems are common after a stroke, and can manifest in various ways, from having difficulties understanding language, forming words or sentences, or speaking clearly. This is due to the area of the brain that has been damaged.

Aphasia affects roughly 1/3 of stroke survivors. This can encompass difficulties speaking and understanding language, as well as reading and writing abilities.

Dysarthria is when stroke survivors struggle to control the muscles in their face, mouth and throat, which often results in slurred or quiet speech.

Apraxia of speech is when there is reduced coordination in the muscles of the face, mouth or throat during speech, which can result in other people misunderstanding what has been said.

These difficulties can be treated with Speech and Language Therapy (SLT), by helping to regain their abilities or by introducing compensatory techniques to ensure that communication is possible. For obvious reasons,  UCLU Giving Voice were keen to support The Stroke Association!

Our stall ran from 08:30 until 14:00 in Chandler House and managed to raise an impressive …

£273.28

Most of the committee got involved in baking for the sale, but we were also lucky enough to have some additional baked donations from other people on the MSc Speech and Language Sciences course and some undergraduate students.

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During breaks in lectures, the queue stretched out into the foyer! We sold out of all baked goods, including:

  • Lemon Drizzle Cakebakesalepic
  • Granola Bars
  • Dairy Free Chocolate Cake
  • Dairy Free Cupcakes
  • Vegan Brownies
  • Gluten Free Millionaires Shortbread
  • Rocky Road
  • An Amazing Giving Voice Madeira Cake
  • Empire Biscuits
  • Banana Bread
  • Granola Bars
  • A Variety of Muffins
  • A Variety of Cookies
  • Cheese Twists
  • Fruit

 

We managed to cover a wide variety of tastes, and all staff and students were very generous in their donations of money. Thank you to everyone who manned the stall and bought lots of baked goods. We by far surpassed our own expectations of the amount we would raise in just one day, and it is so amazing that this money is going towards such a worthwhile charity.

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

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Our amazing Giving Voice cake made by Liz’s Mum!
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Blueberry, Lemon and White Chocolate muffins made by Chloe

 

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Hannah’s banana bread was one of the first to go!

 

 

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What a feast!