Neuro Café 3rd November 2021 by Linda S
World Stroke Day involves campaigns and information about stroke. Stroke has already reached epidemic proportions. There are 100k strokes each year. Across the globe, 13.7 million people will have a stroke and 5.5 million will die as a result.
Seek Help Fast
It has been found during the pandemic that many people are not seeking help early enough. If you suspect a stroke, act FAST. These can be symptoms:
- Face drooping
- Arm weakness
- Speech difficulty
- Time to call emergency number
Other symptoms may include the following:
numbness
confusion
trouble seeing
trouble walking
severe headache with no known cause
World Stroke Day is an opportunity to raise awareness and reduce the burden of stroke. It aims to highlight risk factors and improve stroke prevention and to help people recognise the symptoms and act quickly to get help. A message of hope: recovery is possible.
There are currently some new campaigns to help raise awareness and a key message - time and minutes are precious, and it is very important to act fast. It is important to recognise the signs quickly because in minutes you can lose millions of brain cells affecting movement, speech, cognition and memory.
There is an impact on life after stroke and also there may be changes in your quality of life. Stroke can affect: cognition, memories and independence. It is hoped to improve long-term care, a stroke can change many aspects of your life.
Meaningful life is possible after stroke!
You need to get up again after a stroke and remember - there are things stroke cannot take away. There are 80 million stroke survivors in the world and the type of support people receive varies. Recovery is greatly helped if you have resilience and determination.
Watch the ’We are undefeatable’ video https://weareundefeatable.co.uk for some uplifting information. How you feel can change from day to day; every achievement is worth celebrating.
Recovery
Repetition and exercises are very important in the recovery process. Some elements mentioned including taking a tin of mushrooms out of the cupboard 20 times, or having the family taking the mickey at every opportunity! We all have different coping mechanisms and ways of approaching recovery.
Global Stroke Bill of Rights
This is what we would like to have:
Hope. This not necessarily provided by caregivers or physicians
Psychological and emotional support
To be included in all aspects of society
To receive support financial or otherwise
To be supported in return to work and/or other activities
Access to formal and informal advocacy to assist with access to services I need
Be connected to other stroke survivors and caregivers
Visit www.worldstrokecampaign.org to sign an online petition for this Bill of Rights
LEGS participants reactions
- It is very important to see resilience in other people.
- You need an advocate and someone to help you stand up for your rights.
- You have to know where the organisations are and how to access them.
- What about other medical conditions? We should all have a Bill of Rights!
Visit the www.worldstrokecampaign.org to find out more
UCL world stroke day forum 2021
A series of lectures and workshops regarding stroke.
Useful Links
Same You supports brain injury recovery
Queen Square Neuro Rehab Upper Limb Programme
Elements to consider after a stroke include:
Communities and emotional support
Support for carers
Singing
Stroke recovery
Working after stroke
Travel
Fatigue
Webinars
Communication
Headway brain injury association
Headway Brain Injury Identity Card, apply for one here:
You may find ongoing support with individual groups. LEGS participants suggested you need to think about how to find support and perhaps form a group yourselves. The pandemic has made people link together in ways they would not have thought about before. What about group dynamics? Can a group be too big? This can affect involvement and interactions - it was suggested the optimal number for a group who meet once a week may be 6, 7 or 8.
You need commitment to turn up every week. There tends to be more accountability with a smaller group.
A social worker who worked with dementia carers groups sent them sandwiches when they were meeting to discuss moving into residential care. They were very appreciative, it was the first time they had been acknowledged! The group size was kept very small and participants noted it can be difficult to meet regularly - life can get overwhelming for carers, with lots of appointments.
As carers, individuals thought they were in a bad way, but they reported they learned a lot from listening to others, it helped to put things into perspective and they got strength from meeting and exchanging experiences.
We compared these comments to LEGS, where the benefits lie not just the exercises but also in seeing other people and having chitchat. Being competitive can also have its benefits!
Q. Is LEGS just in London?
Mostly so far in London but as more freelancers join from other towns, we can open more face to face groups nationally. Virtual sessions make the idea of opening up to a wider set of participants possible. For now, face-to-face participation is just in London but LEGS would like to expand with more classes around the country.
Q. Why don’t publicity videos feature younger people?
Videos for stroke are mostly for the older age groups which can be disappointing for younger people because they do not see themselves reflected in the information. We noted that stroke is experienced also by younger age groups including children. Am I the odd one out because I am younger? I feel like I am not represented. A stroke can affect a person as young as 7 years old.
A participant recommended joining Same You on Instagram.
You want to be heard and for your experience to be heard. It is annoying if you don’t feel represented. There are some societies which may be helpful including
Stroke Association https://www.stroke.org.uk/
Different Strokes http://differentstrokes.co.uk
Do they have a younger person’s experience on there as well? We would like to see younger age groups being represented. We would like to see support being global and inclusive. Comment: there is a perception is that stroke is an older person’s condition. In some exchanges I feel like I am too young to have a stroke which is unhelpful! Younger people may be more likely to have a traumatic brain injury, not a stroke per se.
