Peer Support

Hi BW,

Thank you for starting this important conversation. 

As you've touched upon - Peers support may be social, emotional or practical support but importantly this support is mutually offered and reciprocal, allowing peers to benefit from the support whether they are giving or receiving it.

Thanks for sharing your specific experience, especially finding someone who is on such a similar journey. I am wondering what others experiences have been, I would love to hear them.

Diana

I have no locals I can associate with and rely on stroke forums both for support and also for supporting others.

My wife is an excellent caregiver and between us we have learned an incrdible amount about strokes in the last seven months.

Deigh

I have no locals I can associate with and rely on stroke forums both for support and also for supporting others.

My wife is an excellent caregiver and between us we have learned an incrdible amount about strokes in the last seven months.

Deigh

Hi BW,

Peers/friends should also take the piss out of you to keep you honest and not let you succumb to the " woe is me's." They should complain when you ask them to go to the bar and buy the round because you can't carry 4 beers. They should take you places so that they can exploit your better parking options, i.e. Disabled Parking. 

At its core any friendship is a transaction. You give something and you receive. When I first had my stroke I felt my relationship with my best friend was strained because I was doing all the buying, there wasn't a balance. The fact that he is a Neurologist who works in stroke meant he had what I wanted. I didn't like the focus on me. He explained that it was good for him too because he was getting patient insights and access that he would never get in his career.

Now stroke is just a part of the package that is me, not Adrian = stroke. Our transactions are balanced. Our friendship revolves around the stuff that we loved each other for pre-stroke and we laugh. He is the best non-consulting Neurologist a person who has had a stroke could wish for and will always answer my questions but more importantly we are just two blokes who like each other.

Where do people find peer support? I find the stroke incredibly, horribly, isolating. My friends really don't understand, luckily some far away friends have experienced chronic illness / recovery so I'm grateful for them, but for any concept of stroke specific peer support I am really relying too much on my Dad's best friend's wife who has been an amazing support to me but she has much more on her plate than I do!

Kay are you a survivor or a carer. I am unsure. As a survivor I have no stroke support group as such. My peer support group consists of 5 close women friends . We have known each other for over forty years, during that time we have laughed and cried . Tears are a great healer. 

     Kay you said you thought you relied on one person too much. My experience tells me people who offer support are sincere and want to help. With Enableme I now feel I have another support group. I hope that will be your experience so that you do not feel so alone in your struggle.

        Jenny 

Hi Jenny, thanks for your reply. I am a carer. My husband had a small stroke 5 week ago & we have 3 young children. He finally has an outpatient appointment with the stroke registrar at the hospital so I'm hoping that he gets some help tomorrow as we are struggling so much, especially with things like doctors appointments as I can't attend with him but he can't remember what happens in them and it just gets harder and harder as the time goes on, or at least that is how it feels at the moment. Being totally in the dark about his actual risk and what could place him at more risk leaves our whole family in limbo and I truly wish that someone other than myself was able to explain to him how to schedule things like rest time in when I go to the trouble of disappearing for the entire day with children, instead of spending that time being active and awake then being too exhausted to also parent when I arrive home thoroughly worn out from being in charge of 3 energetic bundles. I feel like there is no support from professionals (we have Dr Grimley on our doorstep but cannot access him!) and so peer support becomes so much more important.