This is a thread that I can relate to .
Roland, as you will know from our chat I am convinced of the value of my broom handle. There has been a journey with stages. For a long time I’ve been thinking about writing something which perhaps this will be a prototypical test of my words
I had my stroke during lockdown. As a consequence (?maybe) external physiotherapy has been between absent, patchy and useless.
By necessity I have had to research and invent. I also think physiotherapists and occupational therapists have a block in their understanding that is hugely significant.
I’m fond of analogies:
if I have an interest in a heat source to enable me to cook the conversation with the physiotherapist is about “fire requires a source of ignition so here are some matches.” Not quite entirely relevant but definitely not an aid to cooking. I’m not even gonna mention when an electric hob is actually the device in use!
So my journey started in the immediate aftermath of my stroke with discovering that socks were a bridge too far, many other things a challenge & that teeth could be done left-handed.
this was the beginning of behaviours that now give problems. I am now equal to my socks because I have pushed myself to develop grip in my right thumb & first-finger and mobility in my right arm.
I don’t have the grip or the mobility equal to my toothbrush - is this because my left handed compensation, which was initially a necessity is now constraint, a disadvantage, an impediment to further progress?
Would an averagely competent PT / OT have been able to anticipate those stages in my developmental needs and devise and communicate a program that would balance the short-term imperative and the long-term objective with exercise and behaviour patterns in daily living that are complementary, build capability, managed as a journey?
My conclusion would be if the answer is yes then I’ve only met ones below average . But my belief is that they have been average and therefore it’s not commonly part of their dispensing regime.
Early on I partook of exercises like those described in the GRASP home manual but I was unaware that there was a GRASP hospital manual. The two are complimentary with little overlap in content. My PT’s guidance wasn’t equal to what it should & could have been. It was also insufficient in that it was couched in Latin EG supernation so alien, and uninspiring, academic, no visceral linkage (and because of covid, remote - Which doesn’t have to be an impediment but one does have to recognise how remote therapy provision differs from in person hands-on)
The experience then set me on the path to observing how my good arm still works, observing how things like washing my left armpit fail because of deficits in my movements, so constructing routines that would accentuate what I need in daily life .
I vary my routines on different cycles and without a plan because this is a journey for me that is unknown - pre knowledge is a requirement for planning - but varying with purpose and adaptation based on experiential observation.
Some things i vary after a week. Often I have to observe the need. For example a month ago I realised that when I dry myself after the shower I still put a lot of use into my left arm not my right although I was congratulating myself at the same time for having got to the stage where I combed my hair right handed. I can’t say I’m consistent because sometimes I’m fatigued by the huge task of having the shower but since then I’m definitely much more focused on drying myself right handed without the left hand having much of a role. It is tiring, slow, delivers a result of low quality, and is a step squarely on the path to the future and improvement 
I have used grippable and neuroball and their clever Wi-Fi interface to a tablet with games.
The sophistication of them is back to the matches or possibly two lumps of flint to create a fire.
Neither of them recognise that to pick a coffee cup up requires fingers wrist elbow shoulder.
Neither of them recognises a major problem is spasticity. Neither one of them recognises that to hold the cup requires continuity in the force applied.
Neither of them recognises that once I pick the thing up I want to be able to put it down and that requires opening my hand after closing it.
I can’t turn off inappropriate muscles to allow appropriate muscles to move my arm wrist and hand in an appropriate manner.
The effort of lifting the weight of my arm is palpable, it causes other unnecessary muscles like those in my toes to trigger.
none of this is anywhere in the PT/OT discussions I’ve had.
None of this is in the PTOT “now versus next year” - If they know it they don’t share it, and not communicating it has been a significant flaw in their value delivery. They aren’t value for money - in fact they simply don’t show awareness that building capability is a journey with stages and dependencies probably exist between those stages.
Likewise they haven’t devised programs that have recognised & responded that I’ve had other disciplines and medication and complications and compensations and secondary and tertiary impacts so I need a holistic not a point-specific solution. They won’t direct us equal to the whole task and nor was anybody else equal to the integration required
So all the above is the context for what I do for my capabilities development. To integrate and to direct
Initially I had very little movement so repetitive, dull, bookish exercises, apparently dislocated from life goals were my regime. As soon as I had flickers of movement I added goals like reaching to the top of the shower door, opening the shower door. As I progressed towards those I added all light switches and door handles should be attempted right handed . Washing the car, where to get my hand flat on the sponge requires lifting my right foot off the ground otherwise my toes curl then my fingers curl and my elbow curls - unwanted muscle activations. I’m still not at the stage where I can put my hand flat on the sponge for more than 5 or 10 seconds
I’ve got a moderate size garden that was somewhat overgrown so I bought a mini chainsaw that I can use one handed left handed. As of the last couple of months I’ve been considering buying a two-handed replacement. My hedge trimmer requires two hands and considerable dexterity in the hand operating the primary trigger to push the release button at the same time. I’m just about getting equal to doing that right handed - It’s ugly, awkward, tiring, only marginally functional but it’s doable and it’s squarely on the path to the future. So maybe it is time for a two handed chainsaw to be added to my therapy kit. Therapeutic devices are fat free when purchased by people who need them for therapy - wish me luck with the claim!
The key bit I think is peer support .
I think forums like this could add purposeful subgroups focused on supporting each other with our exercise regimes. I think they need to organising and we don’t have an organising structure here hence the supportive chatter but not cohesive purposeful discussion that is process and goal orientated - We each have difference in the details of our goals but not in the broad overarching sense