The Life with Spasticity Website

The Life with Spasticity website provides practical ad emotional support for stroke survivors with post-stroke spasticity. Spasticity can have a number of causes, one of the most common being stroke. Up to one third of stroke survivors are left with the condition, which even in it milder forms reduces the quality of life considerably. In a situation like that, the patient themselves as well as family members and carers will appreciate a single platform on which experts and members of a patient advisory body have assembled everything worth knowing about the condition and its outlook.

This website is perfect for Stroke Survivors as it has a clear layout with easy to read typography makes the page simple to navigate. Common language without jargon conveys the information in an understandable way. Via an integrated text-to-speech function, visually impaired patients can have the content read out loud, and the website even offers an extensive assistance with setting up your viewing preferences.

The website covers the most urgent questions, besides the most frequently asked question, the information is arranged in sections including:

• What is spasticity ?
• Clinical signs
• Causes
• Diagnosics
• Treatment

To find out more about the website please click the link below:

https://lifewithspasticity.com/

New questions and answers are uploaded on a weekly basis to the website:

https://lifewithspasticity.com/faq

 

 

 

 

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Walking Football sessions

Foundation news: Villa launch Walking Football sessions

Aston Villa Foundation is set to launch its brand new regular Walking Football sessions later this month.  Aimed at men and women aged 50+, walking football is a slower-paced version of the beautiful game.

The fact players can only walk makes it a great leveller, so the Foundation is inviting people of any footballing ability and experience (including those already attending other walking football sessions elsewhere) to join in.

With refreshments available during and after the sessions, Walking Football offers a great way of being active and meeting new people.

While the regular weekly sessions are purely for fun, the future will see the Aston Villa Foundation play occasional fixtures against other Premier League and English Football League teams – offering ‘Vintage Villans’ the chance to represent the club.

The Aston Villa Walking Football initiative will take place every Tuesday from 2pm to 3pm (except during school holidays), costing just £1 a time.

Sessions will take place in the Indoor Academy building at Villa Park on Witton Lane.Anyone interested in joining the Walking Football programme can just turn up on the day and people are welcome to join the project at any time.

For any questions or enquiries about the Walking Football sessions at Villa Park, or to register for the first session and tour, please contact Michael Wynter, michael.wynter@avfc.co.uk or call 0121 327 2299.

Dysarthria and Me

Dysarthria and Me

Today I would like to talk about a condition called Dysarthria. Stroke survivors often suffer from a condition called Aphasia but little is known about Dysarthria.

Aphasia is a complex language and communication disorder resulting from damage to the language centres of the brain. This damage may be caused by:

• a stroke
• a head injury
• a brain tumour
• another neurological illness.

Dysarthria happens when a stroke causes weakness of the muscles you use to speak. This may affect the muscles, as a result you have to move your tongue, lips or mouth when you speak.

I have dyspraxia and I find it difficult to pronounce my words, at times I have to repeat myself, which can result in people trying to correct me. If you have dysarthria, your voice may sound different and you may have difficulty speaking clearly. You may also find your voice sounds slurred, strained, quiet or slow. Other people may find your voice hard to understand. If breath control is affected, you may need to speak in short bursts rather than in complete sentences. Dysarthria does not affect your ability to find the words you want to say, unless you have other communication problems at the same time.

Here are three tips for managing Dysarthria:

• Be Patient- You are on a journey and your recovery will take time. Do not be discouraged because you WILL get better.
• Develop your confidence- The only way to get better at something is to practise, don’t be scared to speak in groups or with your family and friends. The more you speak the more confident you will get.
• Share your stories- Many people do not know about dysarthria, it’s important that you make people aware of your condition so that they can support you where possible, if you don’t tell them they will not know.

If you would like more information about Dysarthria please click the link below:

https://www.stroke.org.uk/news/living-dysarthria-unclear-speech-after-stroke-patient-blog-and-new-cochrane-review-research

Thank you,

Tom

Patient Ambassador Blogs-Life with Spasticity

Hi there,

I hope you’re enjoying my blog.There are two other patient ambassadors who are currently writing blogs for the Life with spasticity website. Through our blogs we all hope to encourage, inspire and support stroke survivors who are experiencing post stroke spasticity.

Please see further information below:

Blog by Kasia Siewruk from Poland: http://stroketales.com/

Blog by António Ceicao from Portugal:http://spasmosnews.blogspot.co.uk/

Happy reading 🙂

If you would like to know more about the project or if you would like to become a patient ambassador please contact Nicole at n.robinson-edwards@stroke.org.uk.

The New Life with Spasticity website

Hello everyone,

I’m really excited to announce that the new Life with Spasticity website is now live, please see the link below:

https://lifewithspasticity.com/

The patient advisory board which I am a part of were instrumental in the development of this website, and I’m proud to see the evidence of all our hard work.

Please share this information with your friends and family in order to support as many stroke survivors as possible.

Thank you.

Tom

Meet the Patient Advisory Board- Merz/SAFE Project

 

On Friday 7th October I attended the first patient advisory board meeting for the Life with Spasticity website in Germany. This was the first time I had travelled alone after my stroke. Eight board members attended from across Europe, it was a great opportunity to meet and work alongside other stroke survivors. We all had the same goal which was to help create a website, which could inform and inspire stroke survivors with post-stroke spasticity. Everyone who attended the meeting either had a stroke or cared for someone who did. It was a great opportunity to learn from others and make new friends. I’m really looking forward to seeing the new website and I hope it helps stroke survivors and their families.

In the picture below are 6 of the 8 board members who attended the first board meeting in Germany.

Grethe Lunde
Tom Flaherty (Me)
David Britt
Manuella Messmer Wullen
David Britt
Kasia Siewruk

Thank you for reading,

Tom

 

Merz/SAFE Patient Ambassador- About Me

Hi my name is Tom Flaherty and I have been selected to be a patient ambassador and board member for the SAFE/Merz Post Stroke Spasticity Project. This project aims to create an educational space for stroke survivors experiencing post-stroke spasticity. As a patient ambassador I will be writing blogs about my experiences volunteering on this project and how I have managed my post-stroke spasticity using exercise. This is a great opportunity for me to support other stroke survivors and it’s a great honour to be a part of this project.

Thank you for joining me on this journey,

Tom

There will be a better day

“There will be a better day.” Tom

Tom lives in the UK and had a stroke in 2011, as a result Tom now experiences post-stroke spasticity and has no movement on the right side of his body.  Tom has not allowed his stroke to stop him, instead his positive attitude and determination has helped him to rebuild his life. Tom is active in his community and regularly volunteers at the Life After Stroke Centre in the UK to support other stroke survivors. Tom explains that “Helping others gives me perspective and helps me to stay positive”. By helping others Tom can appreciate the journey he has been on and is able to support other stroke survivors.

Post-stroke spasticity has a huge impact on stroke survivors leaving some with the conditions that’s make them dependant on others to carry out everyday tasks such as getting dressed and eating. Studies have shown that around 70% of stroke survivors living with spasticity say it has a major impact on their life. A way to combat this Tom exercises regularly and attends the gym five times a weeks, which is more than he did before he had a stroke. Attending the gym not only helps Tom to be healthy but it is a good place to socialise and meet new people. Exercise is essential for Tom and it has a positive impact on his life, body and mind-set. Exercising regularly has helped Tom to stay positive and to enjoy life after his stroke. Post-stroke spasticity can be difficult to manage and a huge part of one’s recovery is in the mind however Tom encourages stroke survivors “That there will be a better day”. Tom explains that “If you can overcome the battle in your mind, you can overcome the challenges in your physical body”.

Tom’s Tip

“It’s easy to be down but it’s harder to be up once you’re up you’re up”.

The Power of Exercise

In this blog Tom will discuss his exercise regime and how it helps him to manage his spasticity.  

How often do you exercise a week?

I exercise five times a week and each exercise session lasts 2 hours.

Did having a stroke impact how much you exercise?

I exercise more now than I did before I had my stroke, before I was exercising to keep healthy and now it’s for my benefit as I’m trying to make my weak side (my right side) as strong as it can be.

How does exercising help you manage your spasticity?

After two hours of exercise it tends to alleviate the stiffness in my arms as its stretching the muscles. After any exercise you generally feel good and feel better about yourself and that’s how I feel.

Has your spasticity improved since you started exercising, if so how?

That’s for other people to say, once you’re conscious of your spasticity you’re always conscious of it so you tend to be down on yourself. I have to admit that after four years it’s been much better. One of the other positive aspects of attending the gym is that it’s very social so you’re talking to people and if you’ve got a voice problem like me you tend to use your voice a lot more. Before the stroke I hardly ever socialised and ever since the stroke I have no choice as people tend to be more interested in you.

What is your gym routine?

The first exercise is on the arm with the hand bike, then on the mat and I do a lot of stretching with my arms and legs. I practise my walking in the squash courts and I also exercise my arms.

Would a stroke survivor need a personal trainer?

I think they would need a personal trainer to set up a regime; the personal trainer would know what muscle groups to target. A personal trainer would also give you hope and encouragement.

What advice would you give stroke survivors who would like to start exercising?

The best advice is nothing is too little, even the smallest of exercise is important as it helps to boost your self-esteem. I know stroke survivors who do nothing and it causes you to moan a lot. For a normal person exercise is a pain for me exercise is a privilege. When you have a condition you enjoy what you’re doing, you enjoy every minute of it.

What advice or encouragement do you have for stroke survivors?

Don’t let life pass you by when you appreciate life more you get more from it.

Apart from feeling healthier what are the other benefits of attending the gym regularly?

Socialising

Please seek medical advice before you start any exercise plan.