Getting the most out of rehab: survivors share what they learnt
‘How do you know what you don’t know?’ and ‘What do you need to know about stroke rehabilitation?’ We hear these questions often on StrokeLine.
Survivors of stroke often learn through self-discovery and exploration. They can also find answers from their team of health professionals. Gaining insight through the experiences of others is another important way.
Stroke Foundation sat down with survivors of stroke to talk about their rehab experiences. The result was insightful conversations and expert advice on getting the most out of rehab.
1. Ask questions.
Questions can lead to answers. Questions can also lead to more questions. They often lead to important conversations that help you understand your therapists’ point of view and the processes around rehab. They also help your therapists understand the things that matter to you.
“I figured it would help me to ask questions. I asked my rehab professionals, ‘Why am I supposed to do this? What part of the rehab objectives does this achieve?’.” – Brian
“Some things are not readily discussed. Stuff that was tricky was less about the rehab and more about ‘where do we go from here financially, what support services can I access while I’m unable to work.’ When I finally got to speak to a social worker about these questions, it opened different avenues and solutions that I hadn’t considered.” – Elisha
2. Set goals.
Set a goal that you want to work on. Discuss these goals with your treating team. Doing so makes it more personal, meaningful, and motivating. Ultimately, you are in charge of your life and your recovery.
“Don’t just focus on the physical. Mental health, cognitive effects, hidden disabilities are equally important.” – Paul B
“Goal setting is very important. Knowing what you’ve there for and what you’re trying to achieve.” – Kevin
“It was important to set short and long term goals, more importantly setting goals that were achievable.” – Clive
3. Involve family and friends.
Having a support team is crucial to rehabilitation. Physical support can ensure your safety and help with exercises. Emotional and mental support help cheer you on and keep you motivated.
“I had a very strong advocate in my wife who came to my rehab sessions every day. It’s important to have someone who understands you, what you can do and what you need. Then communicate that to the rehab providers.” – Kevin
4. Rest and relax.
You may feel like you need to work hard all the time but taking breaks is vital. Good sleep and doing things you enjoy support your wellbeing.
“Take time to get to know your body. You discover what you can cope with, what works for you, what doesn’t and what things can help.” - Saran
“Give yourself permission to take time to heal properly so that when you return to work, you’re at your best. You will achieve your best outcome if you take time to focus on your rehabilitation.” – Elisha
5. Advocate and speak up.
If you think you should be getting more rehab or something isn’t working, speak up. Get a family member or friend to support you, or to talk with the team on your behalf.
“Advocacy is so critical. I mean, I didn't know up from down. I was pretty vulnerable. I was very lucky I had my wife to advocate for me.” - Paul F
“Advocate for yourself. If rehab is not fit for purpose, it’s a case of being honest and saying it’s not working.” - Paul B
“The hospital wanted to discharge me earlier than I wanted, before I was ready. My physiotherapist advocated for me and what gains I could still make.” – Kevin
“Because it is difficult to talk, learning how to advocate for my disability is important. Continue looking for agencies that advocate for people with aphasia.” - Kris
6. Connect with other survivors.
You are not alone. And you don’t have do it alone. Connecting with others provides hope and empowerment.
“It makes a huge difference being connected with someone who has had a stroke because they can understand what you are going through. They can be a mentor and help you navigate the system.” - Saran
“Seeing people who have been through the same thing and seeing they can do it, it gives you the motivation to try harder yourself.” – Brian
“Meeting other stroke survivors and another person with aphasia would’ve been helpful and could have provided hope.” - Emma
7. Keep going and working on neuroplasticity.
Recovery and rehabilitation after stroke is a lifelong journey. There will be ups and downs, good and bad days. Don’t give up.
”Plateaus can be part of the recovery process. These are the times when improvement slows, even though you are working hard.” - Elisha
“Just because it slows down, it doesn’t stop. So much is focused on early rehab, I didn’t understand well enough that it’s a lifelong process. When you were little and learning to walk, you built a highway. After a stroke, that highway gets shut down. But every time you practice, you clear more debris, and you create new roads. 13 years out, if I don’t practice the things I need to do, the road becomes overgrown, and those things become a little harder to do.” – Elisha
“Stroke recovery is long and not linear. Make the most of rehab by going. Four years after my stroke, I still go to rehab. A little and often is worth more than going bananas twice a week. Consistency beats intensity any day of the week.” - Paul B
“It’s important to have the mindset and mental attitude to maintain the daily work. Sometimes it’s small, sometimes it takes a long time. The more you work at it, over time it gets better. Trust the process and keep going.” – Scott
Did you enjoy this blog? You may want to check out these other resources:
Hope Meets Reality: How to… | enableme - stroke recovery and support
Rehabilitation flowchart: in Getting good healthcare | enableme - stroke recovery and support
Paul's website charts his rehab journey