One of my favorite books is by Peter Levine: “Stronger After Stroke”
A well respected physical therapist and expert on stroke recovery. Here is a conversation he had with a patient: I read this when I get Lazy. 
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Yes - I hinted at another dimension of this yesterday or the day before
I think if your life habits were to run 20 minutes everyday, go to the gym three times a week, etc etc then the riggers of rehabilitation exercise (and re- is the wrong phrase perhaps) then the change of pattern developed over a lifetime isn’t needed .
But if a change of more than habit, outlook perhaps, is needed then when it’s combined with the emotional and all the other changes that a stroke imposes it becomes a hard ask of oneself.
Combine that with physiotherapists etc who are well versed in muscular skeletal descriptions in Latin but have no tradition in how to communicate to the ‘layman’. no skills in the cooperative framing of visceral goals and translating into actions that incrementally deliver the goals.
Have little idea about how to motivate & no realisation that it’s THE important part of their duties, and are encouraged by budget holders to find reasons to shuffle people off their lists and thus have self interest in pronouncing a plateau & time horizon where no further progress is possible.
Also if we take humans who are tribe animals with language and other social skills aimed at tackling challenges communally… and we split these folk up into isolated individuals with a solo challenge - surprise surprise! - compounded problems, high failure rates.
So now we see how multiple factors add together & explain challenges many people face - The dice are loaded before we combine that with acces to resources and skilled people.
Eg My PT thought it appropriate to schedule one session every few months!!!
I have mentioned many times but had no traction yet - around the idea that linking those who have a ‘physical prescription’ together in a peer support group - that aids all member’s fulfilment of their individual prescriptions and uses interventions from the Latin speakers to adjust individual prescriptions over time - we have access to a new paradigm. we have the likelihood of new levels of achievement !
I put some of it in Digitally Enabled Chronic Care Community Networks: beyond '1hr Fortnightly zoom Cafés'
I’ve got an appointment for a meeting to talk to some health boards in mid December
AND I think we have nascent potential with the infrastructure that is here - but we need a shared vision of the potential - who’s with me?
Ciao
Simon
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@Outlander motivation is a big part of recovery and I’m sure all of us ar some point need that reminder.
I also think at some point rehab also has to become part of your daily activity rather than specific time set aside for it - purely because life has to go on and return to some form of normality at some point.
Thank you for sharing.
Ann
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@SimonInEdinburgh
Simon I hope this runs parallel to your contribution:
I have done months of physical therapy at two of the best facilities in The State of New Jersey. In the first, my insurance paid for 3 days a week (one hour). The second was 2 days a week, again: one hour. My research shows that at least two hours a day will give the best results. So I wound up educating myself and getting more out of my at-home exercises etc. Though I did glean some valuable info from my therapists.
Not a single therapist could give insight into taking care of my progressing spasticity.
I would say: “my stiffness is bad today” and they would reply: “Sorry” and then we moved on to their agenda for the day. The best advice I could get was “stretch and Move”.
I have to admit, they were very nice people and gave me accolades when I did well.
So…there certainly was a kind of motivation instilled in me.
Thanks to Levine’s book I found out about contacting a “Physiatrist” this is an MD who can help with physical training, therapy, and prescribes drugs if needed. The man was so helpful and gave me an understanding of spasticity and how at least, to manage it.
I learned a lot about spasticity from the book “Stroke Rebel” as well as “Stronger after stroke”.
Your quote:
I have mentioned many times but had no traction yet - around the idea that linking those who have a ‘physical prescription’ together in a peer support group - that aids all member’s fulfilment of their individual prescriptions and uses interventions from the Latin speakers to adjust individual prescriptions over time - we have access to a new paradigm. we have the likelihood of new levels of achievement !
Well said. And I feel so badly for those who are alone in their recovery, isolated, and lacking the resources needed.
I’ve been enlightened and educated here on our site by kind and caring members: certainly an addendum to my recovery.
I think a better word for motivation might be “intentionality” . I intend today to spend such an amount of time on my recovery come hell or high water. “grin and bear it” perhaps? Best to All, Derek
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Hi Ann: due to my special form of spasticity, if I take too many days off then my normal every day life gets harder to live. Movement becomes harder. This is unfortunately, my case.
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Hi
At the risk of going off on a tangent
I guess you didn’t know that
Etc
Can be directly quoted by this platform?
If you take a post of somebody else’s and highlight some of the text a little pop-up window says “quote | share” - if you highlight your own post it says edit but that is irrelevant to this -
I guess it’s just possible that it doesn’t function for you yet because certain platform characteristics are unlocked by promotion through the trust levels.
One criteria needed for promotion is liking posts. you are still on the most basic trust level but meet the other criteria -: you can read about trust levels here -
Anyway when you highlight something you want to quote you can include the quoted text directly & automatically in a reply
When you do a quote it’s added to the end of the open reply so sometimes you have to cut and paste it to where you want it
Ciao
Simon
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Sorry Simon: still a bit of a newbie. Any thoughts on the “Tome” I contributed?
I may have rambled on.
I have been put on the respected list. Yipee!
thanks for the tech. info.
as you said as well…stroke brain here.
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Not sure what you’re referring to here unless
do you mean What do I think of those books?
I haven’t read those books
I’ve read the odd research paper from Google scholar & a lot of forum posts!!
I referred to you with an @ sign on your name and that’s why you get notification that there is a post mentioning you
The respected badge came to you because you’ve received likes.
If you look at your profile you’ll be able to see who - clearly your un aware how much of this platform is tuned to run on the likes - they’re sort of built into its DNA.
Seems to be a widely unknown. Because you’re far from the only one 
Ciao
Simon
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@SimonInEdinburgh Simon: I mentioned a little more than the books?
Physical Therapy, Physiatrist, the lack of understanding of spasticiy.
Two to 3 days of therapy being too little, Intentionality, rather than motivation.
Perhaps I didn’t answer your post adequately, but I got the gist of it and it was timely and valuable. by Tome, I meant I may have rambled on a bit.
How do I do the like?
So I must humbly apologize to all. Hmmmm, my first reprimand.
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Derek, at the end of each entry in a post, there is a little heart symbol like the one in your last entry below:
You click on the heart to “Like” a post and it turns red 
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So now you know how, just remember to use them wisely…don’t be too frivolous now, you only get a certain quota each day 
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It’s certainly wasn’t a reprimand that’s not my style
And @EmeraldEyes is right you only get a quote each day but your quota will increase very rapidly because by the time you’ve given I think another 19 likes youll have been promoted two levels (I think)
You got all the other characteristics for rapid promotion - that’s why it was so obvious you didn’t know about it
You’ll also get some badges when you run out of likes each day - I think we get 50.
I did ask for it to be increased - perhaps we can try again next week with that request
I think it displays a wider problem that how to work on this platform is neither obvious nor explained
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You write long posts!!!
I think there’s a few people who think I’m the worst one on that score
I am 
I’m hoping this is an environment where people are tolerant and empathetic of our character flaws!
Ciao
Simon
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Yes, I’ve wondered what you might call a “Physiatrist” in the UK… I presume we must have an equivalent.
The other thing about “spasticity” is that I do prefer your term hyper-tone, Derek. The trouble with spasticity is that (to my mind) it refers to muscles that have no peripheral nerve connection all the way to the brain. These are totally unused muscles that would exist in someone with complete contracture of the arm, say. They are in that state each day. A muscle that works one day then misbehaves the next is termed “spasm”. This does not come from me, but from a physio that works with me once a month. He has 40 years of experience with stroke patients.
Addressing hyper-tone, Stretch and move are certainly good starting points. Apply pressure to the muscle/leaning on it can help, but pray, do share more tips ; I’m possibly in the same boat as you, trying to keep afloat as Winter thickens.
Thanks for your posts in this thread, all the best, ciao, Roland
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@pando yes Roland I suppose we are suffering in tandem. I think in my case my neuro-pathways from the brain are half working if you know what I mean. I feel for those poor souls whose arms are clutched to their chests with hands that won’t open. I can I least move everything with cement-like feeling. Your Physio sounds like a good one.
I think I described the early morning bed spasms. Violent shaking whole right side for 10 or so seconds . The amount of severity determines how my day will go.
The poor brain can’t over-ride the spine that over-protects and is a poor second brain.
Guess what? we had about an inch of snow this morning, so we know what’s coming.
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The cold weather probably really aggravates your issues.
You have the muscle spasticity issues, which is quite common. Roland suffers from this as well.
My mother never had these problems. Her problems were mostly all mental after she recovered physically (6-8 months). Her main physical issue was a little hand/finger weakness in her affected hand. But it wasn’t a big deal.
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@Matthew1798 Yes Roland and I have been corresponding with ideas and laments about our similar conditions. I can’t even imagine what it was like for your mom. Mental issues are another whole awful ball game. Especially for you, the care giver.
Regards, Derek
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She basically lost her mind over time. The stroke was too much for her to bare. She didn’t have vascular dementia (that’s what they said).
Strokes are so devastating mentally, as well as physically. She escaped much of the issues that stroke patients have physically, but the stroke ended up taking her mind. I think her previous fragile mental state before the stroke led to her becoming so mentally ill after the stroke. I think you bring your past mental history into your stroke.
I hope your problems ease up over time.
Peace and healing.
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Thanks Matthew; I appreciate that.
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