Members of the Stroke Support Group Pretoria meet every Tuesday. This group is open to all stroke survivors, their families or care-givers and all people assisting with rehabilitation or willing to help. The group functions mainly as a support system, but voluntary professionals also provide group sessions. The aims are to facilitate recovery of the stroke patient, to educate the community and to provide a social forum and network so as not to be isolated within the community.
What has inspired you to be involved in stroke support?
I grew up in a family that has been involved in community service for generations. Whilst I studied physiotherapy I realised even more how disabled persons are isolated from society and are lonely. Later I chose to be involved as I anticipated what benefits it would have for those persons to belong to such a group and encouraged all my patients to join. It was also a new concept to support people socially in those days.
Now I realise that I have made a difference in hundreds of people’s lives over many years, three decades actually! I have motivated husbands, wives, children, care-workers, volunteers as well as stroke survivors and those with head injuries and other disabilities. Furthermore, looking back, I have developed many skills by being involved in voluntary community service which I would not have done elsewhere. It also made a difference in practicing my profession in many aspects.
How did the project come about?
Occupational therapists at Steve Biko Hospital, then called H.F Verwoerd Hospital, in Pretoria, recognised the need to support stroke survivors and together with a number of physiotherapists and other professionals and interested persons started the organisation as the Stroke Aid Society of Pretoria. We tried to get a national organisation registered, which was not allowed by the registering body at the time and then all those groups involved in this attempt registered individually. Firstly registering was as welfare organisation and now as Non Profitable Organisation.
What does stroke support look like in your country?
Keeping the public informed is a constant need. We have marketed in many ways, but have to keep at it constantly with limited success. It is an uphill battle to get professionals to refer people to the group. However, we often have people contacting us via our website and others who read about the organisation in local “What’s On?” and free adverts in local newspapers.
Many people do not have their own transport and public transport is often unaffordable and therefore they cannot attend weekly meetings, therefore our intention is to get groups started in the community, but that requires volunteers with determination and willing to put in an effort over a period of time, which is a challenge. Unfortunately we do not have major sponsors which would help immensely.
What have been some of the outcomes of the project?
Members are proud to have been part of the book Strokie’s Stories project. This is available from https://www.smashwords.com/books/view/352259.
The weekly gatherings re-develop their “forgotten” or “lost” abilities and give them a sense of belonging. This leads to new confidence in themselves. By supporting others at the weekly meetings, and making new friends, developing new skills, they feel part of a more normal environment and that life is worth living. There are regular awards for those members that improve. These are a great honour for them.
To me personally, involvement in a support group has aided in my own growth as a person. Managing volunteers over many years has sometimes been trying but also enlightening. I am irrevocably able to confirm that to manage volunteers is quite different to managing remunerated staff. Most (unpaid) volunteers are internally motivated, dedicated and willing to serve and to help others and they put immense effort into this, often not getting any recognition.
What has been the feedback from stroke survivors to the project?
Excitement to see their name in print as an author of Strokie’s Stories and being enabled to tell their story as an inspiration to others. As they take part and have duties at the weekly meetings they also are encouraged to develop more skills, become more independent and make new friends at the meetings.
What has been the response from others – community, doctors, politicians?
In general, we have an uphill battle to “educate” the community about “after a stroke” and to motivate the professionals to buy into referring their patients. We visit practices, give talks at groups and retirement centres, also on the radio and TV, but we only have reaction once a person has a mother/father/spouse with a stroke. Then often it is to ask where they could get free rehabilitation or where they could be housed.
There is a positive feedback of the book. It is truly inspiring and professional. The book is used as a marketing tool and given to presenters who give talks at the weekly meetings. Visitors to the group always make the remark that they did not know stroke survivors are like that: do they expect the members to be zombies? By getting the public involved in presenting high level talks and demonstrations at the meetings, we also try to lessen the “stigma” of being differently abled.
What would you say to other people to make them take stroke prevention seriously?
Watch your blood pressure, sugar levels, and do enough physically to be strong and fit. Also watch your stress levels. Get a hobby or two and come and be a volunteer in a Stroke Support Group: You would learn a lot about living and appreciate it!
What is your reason for preventing strokes?
Life is for living is my motto. I actually only need to watch out for myself as I am single and my children have to look out for themselves and their families. However, they know I advocate eating sensibly, watching weight, doing sport or exercises and to relax with a good book or get a hobby to de-stress. My friends also know this and know of my continued involvement with the Stroke Support Group.
The Stroke Support Group in Pretoria is firstly there for those that survived. With better treatment immediately after a stroke the severity is less nowadays and more persons survive, thus the need for support groups is greater. We only concentrate on survivors, but also those that are indirectly affected - family members and carers. This is also the message we want the professionals and public to hear.
For more information:
Facebook: Stroke Support Group (Pretoria)
Health Talk Video: https://www.youtube.com/watch?v=AgsmFJLQpm4