Notes from the Neuro Café 28th July 2021 by Linda S.
Sumita and Ruby from Healthwatch joined us and were interested to hear our views on ’how to live your best life’.
LEGS participants were invited to introduce themselves and give a brief explanation of their experiences. Most people were still facing challenges, yet felt they were doing quite well.
Some of our experiences:
Completed rehabilitation online with Queen Square (London).
Feeling physically quite strong; doing bowls 2-3 times a week, walking, 3 exercise classes a week, working with neuro psychologist.
3 months in Charing Cross hospital, then community rehab, Queen Square, LEGS.
Participating in 3-4 LEGS exercise sessions a week; speech has come back; massive improvement in function of arms and legs; hoping to make more progress.
What are you looking forward to?
Sumita asked people what they were looking forward to, answers included:
Travel, getting back on a bike, resuming running, going to the gym, seeing friends and family.
There is lots of life to be lived still and far more recovery than the doctors suggest. The steepest curve is in the first six months after falling ill.
It was noted that some people did not want to be labelled ‘disabled’.
Freedom before the pandemic and post pandemic
What do you like most?
Going to bed!
Seeing grandchildren, which brings a whole new world of experience
Seeing friends and family e.g seeing relatives at a wedding
Bowling, meeting new people
Finding new activities and ideas e.g planting seeds
We all enjoy the LEGS community of people
Zoom has been a revelation. Able to see grandchildren, Zoom birthday parties in seven different locations with cake in front of them, quizzes etc.
Using and learning new technology.
Would have liked to have someone to talk to
Can’t make it to a local club
We have undergone traumatic and life-changing events; what happens after the acute care? We found less and less support service after a few weeks of community care.
Realise you will be facing new challenges now; some of them will be with you for your whole life.
Would like more possibilities for social interaction and to talk face to face with people, friends and family, rather than Zoom.
It was noted that mobility can be a challenge which makes our plans moving forward tricky - a bus may be too difficult, cabs are useful but expensive.
Problems encountered include anxiety in crowds, fear of falling and general loss of confidence - having been very active before falling ill.
What helps you to live a good life?
Going to the theatre
Encouraging and supporting others
Acknowledging it can be difficult to envisage our "best life"
Focusing on personal goals and seeking support to achieve these goals
Volunteering e.g at a food bank, you can volunteer without being fully able-bodied
Sharing experiences, not being isolated
Joining community groups like LEGS
Many would like to have more support groups in their local area and know how to find them.
Friendship circles may change after a serious illness like neurological damage. It is vital to have a good social network around you.
Living alone vs with someone - there is a big difference between these circumstances.
It is good to pass on our experience to others and to try to support them.
People who have lived through the experiences have the most knowledge to share.