I hope you all are doing well and taking good care of yourselves! I was referred to this resource from a kind stroke community member from the US.
I'm currently a graduate student studying occupational therapy, and I've been really interested in learning more about what stroke survivors wish they had after going through health services like outpatient rehabilitative therapy!
I'm trying to develop a resource guide for stroke patients who have gone through 6+ months of outpatient occupational therapy services and are ready for discharge. A lot of the time, patients don't want to leave therapy, or they want something routine to continue (community center, recreational activities, etc.) After developing a routine and a relationship with their therapists, it's hard to continue that after discharge.
My question to the stroke community is: What would you like to see in this resource guide? Would you like information on locations of where to go, forums to read, websites to access? Is there anything you wish you knew before or wish you had that would be beneficial to include in the resource guide?
Please feel free to share any resources/links in the comments here; I so greatly appreciate you all in this community! Although I understand that this forum is a resource based mainly in the UK, I believe that stroke community and togetherness has no boundaries and I would love to share any helpful information to patient's in the states as well!
Thank you all so much and I hope everyone is taking good care!!
The brain starts its neuroplasticity fairly rapidly it seems, when I was in hospital I read a lot and watched telly too. Hence, when I came out of hospital I kept on reading and watching telly, as a result I have no difficulty reading books and watching television programmes now, whereas, other physical and mental functions were neglected, and the momentum of their recovery has been sluggish. The reason I am telling this story is because I wish I had known how important it was to begin repetitive practice straight away. I had two short physio sessions in hospital, and that was it apart from a few emails from the physio.
And the reason I have written that is because I think you will struggle with finding patients here who have completed outpatient rehabilitative therapy as many of us were discharged and left to our own devices with little or no follow up support. The NHS claims that a rehabilitative programme will be arranged after hospital but for many of us it wasn't and we have been left to sort things out off our own back or just muddle our way through recovery using resources like the Stroke Association forum.
Wow thank you so much for sharing your powerful story, I really appreciate it! I'm saddended to hear that many of you in this community were left to handle your situations on your own... I feel that it's quite/somewhat similar to how the system runs in the states.
Thank you again though, and if you have any more information, I would be truly grateful! You're an amazing help, Rups, and I'm wish you all the best and more!
Agree with Rups, I’m only 4 months in but after the initial 6 weeks after leaving hospital the after care is very poor, left to do most of the chasing up yourselves. Couldn’t fault the first 6 weeks and my time in hospital tho.
If it wasn’t for this site and the support from others im not sure I would have coped aswell. Hope your well and can make a change over ever small with all the information you gather.
Some excellent resources I uncovered after being discharged were/are:
1. GRASP - Graded, Repetitive, Arm, Supplementary Program - a free arm training course useful for people at all stages of hand and arm recovery.
2. The Moodgym - a now no-longer-free online Cognitive Behavioural Therapy (CBT) resource. It was originally free of charge and now equalled in the UK by the NHS Moodgym.
3. Recovery indices such as the Barthel Index and Fugel-meyer tests. Not just medical resources but excellent for defining goals for functional recovery.
While the items I mention above are or were essentially free, one of the best physical recovery programmes can be found from ARNI (Action for Rehabilitation from Neurological Injury). Their "Successful Stroke Survivor" manual is the best recovery guide this side of paying for specialist physiotherapy services.
Please note that I am not affiliated with any of the above - I would just like everyone to have the level of recovery I have been fortunate to have, having gone from wheelchair to Half-marathon completely unaided.
The only info I can impart of use is that, here it is a bit of a postcode lottery. Wealthier and more condensed areas tend to have better facilities, and there seems to be more resources for patients after discharge. Rural and poorer areas tend not to have this kind of thing. It depends which coffers get the higher percentage of government funding. I won't go on a political/social rant because it isn't relevant. Part of your study though, I imagine will include the deficit as well as the benefit.
I agree about the ARNI book being useful. Also EVA PARK for those with aphasia, and GripAble for upper limb practice are great. Advice on return to work and to driving is important for younger people affected by stroke
www.elysenewland.com - an OT with wide reaching knowledge of having worked with stroke survivors www.masterstrokecoaching.com a former stroke survivor who now gives NLP coaching to stroke survivors and their carers.