Im interested in hearing from others who are longer term survivors.
I am nearly 8 years post stroke. While I have not made anything like a full recovery I have over the years been able to do a fair bit. Currently
I still have no function in my left hand. I have however been fortunate enough to get a new physiotherapy referral and in the assessment have discovered that while I have some minimal ability to walk I have over the years developed some balance problems
This, along with considerable deconditioning of various muscle s
Has affected my confidence in walking to such an extent that I am no longer able to go out without accompaniment. The new physio regime is aiming to help with the balance and confidence issues and I hope to make some progress in the coming year. If anyone has a comparable experience do share how you got on. The physio will help with my left hand spasticity also. Overall I am feeling a bit more encouraged that I can correct some of the things that seem to have gone backwards over the years.
Heres hoping
Tony
There is a proud father who has posted on elsewhereā¦
She had a stroke as a child. Grew up without the use of her affected hand. Raised two children & when they went to uni she had more time.
So she went back to physiotherapy.
After meeting an inspired and inspiring therapist she gained capability to pass the exam and then drive a school bus.
On a much more prosaic level.
Iāve been fighting learnt non-use constantly.
I can nearly extend my affected arm as capably as my left. Thatās re-stretching tendons and muscles. As I gain extension in the whole arm so I gain use of my fingers when the arm isnāt extended.
So what I do know from first-hand experience (pun not avoided) the more you work the more youāll gain. I would hypothesize it will be a struggle, a journey taking years start effort will bring the reward.
Ciao
Simon
Hi Tony,
I donāt have an experience to share but wanted to wish you good luck. Iām sure it will help you get some of your confidence back; although no doubt it will be hard work at times.
Would love to hear how you get on.
Many thanks for the encouraging reply
Iād like to suggest for your confidence with walking that you start by walking a short distance, maybe from the front door to the garden gate (and back). And concentrate on becoming more confident in that space before venturing further.
If thatās too much just now then choose somewhere indoors. Balance problems can be fixed. Even in sitting you can work on your balance by not resting against the back of your chair (as youāre using your core to keep you upright). And reaching in sitting works your balance too, as well as reaching in standing.
Thanks for your kind reply
I anticipate it will be a year or so before I See any real results
Tony
I thought occurs, prompted by @pamelai1 (hi Pam 
)
If you use the three bar menu at the top of the screen - You may know it as a hamburger menu - then select videos, then scroll to the select option, and select amber, then apply, then watch the amber videos and if they are not challenging enough repeat the process but select green videos. If they are too challenging repeat the process but select red videos
These are curated exercise videos at 3 levels of steadiness on your feet. Nicola and Lisa from the stroke association online activities team also run peer groups that use these videos and zoom meetings so you have a group that you go through the videos with one video per week.
- thereās opportunity for the stroke association to be joined up & to leverage their own assets across their own delivery channels - or to listen to opportunity to be soā¦
There are lots of other sources of unpaid inspiration available - the YouTube channel rehab HQ is one such but there are othersā¦
Ciao
Simon
@Anthony.Nickson You have some good advice here from our dear members. I donāt know your full situation, but I can tell you what helped me. I was at āKesslerā, the best physical therapy facility in New Jersey USA. for many months.
Did your Physio mention the all-important āStrengthā?
Stand more than you sit, even if you have to hold onto something. Weightbearing is essential. I have my desktop computer at a standing table. When I get tired, I just move the monitor and keyboard/mouse to a sitdown table. (even easier with laptop)
Sit-to stand squats from a chair build quad strength. If you are too weak, use a chair with arms to help push. Or have someone help you do the best you canā¦3 sets of 10 reps.
Hopefully you have access to weight machines that build leg strength like the leg press machine?
Then there is walking itselfā¦the functional exercise, as far and as often as you can.
I wish you the best and hope you can build some strength in those legs. Build a good foundation.
Derek
By the Way: @SimonInEdinburgh Simon, what a storyā¦bravo!
Wanted to at least say hello to you. I donāt know if anything I have to say here will be particularly helpful to you but I will try anyway. It has only been 2 years, 3 months since my strokes, but even in that short time, I have had to unlearn some of the adaptive behaviors I was either taught or picked up along the wayādoing things only with my right side; looking at the floor when with company or during walking (to try to ignore movement around me); not standing up straight when using a walker or cane; not turning my head in trying to focus on something; and looking up to watch tv or talk with someone as I see better looking up than down, straight on, or to a side.
They made sense which is why my brain went the easier route in using them, but none of them are helpful in getting back to driving, using both arms and hands, gaining strength or walking with any confidence. It is still a struggle many times, but it gets easier over time so I know it is working.
Best wishes and Merry Christmas!
Iām sorry that you feel youāre going backwards, and hope that the physio sorts you out. I would like to keep up with how youāre getting on as my husband is going through similar, but he is only 4 months post stroke. The problem is in our area it takes several months to be seen by the community teams for care, physio, continence and anything other support he needs and I havenāt got the knowledge or ability to help him with.
Keep soldiering on, and everyone will be behind you, willing you forward.
Hello again @Shelbo
Just a thought. Waiting for professional advice means that muscles and tendons shorten and weaken. Learnt non use becomes habit .
Anything that can be done to counter these factors is effort well spent.
Devise your own imagined activities. You havenāt said where the capability boundary is but find that and work on it for example if sit to stand is impossible then at work on moving legs - Eg put a ball on the floor and the foot on top of it when sitting and attempt to move the foot and leg back and forward left and right.
If more able try and raise the bottom off the chair if more able try and maintain a standing first while holding on to something to both sides or in front then to not holding on but not moving, then moving 1 step - maybe with a rollator, then one backwards
Look around each time that there isnāt danger from a fall. For example sit to stand practise to work up to a full stand can be done from sitting on the edge of a bed .
If upper limb problems then again find incremental activities. I started with trying to lift my arm to my navel and within a few months to the top of the shower cubicle door
The exercises in the Video tab of the Menu on the left of your my stroke guide screen
in the Red section found by accessing the drop-down to select a video set,
and the classes periodically run by Nicola and Lisa are a good starting point. There is plenty more on different strokes YouTube page. There is plenty more on Elise newlands and also on Tara Tobiasās YouTube and lots of other people too publish stuff that I havenāt actually used
Donāt hesitate to ask clarifying questions if this sounds useful but not sufficiently detailed for you to start exploring on your own
Ciao
Simon
Thanks for taking the time to respond
Have a lovely Christmas and best wishes for the new year
Cheers
Have a great Christmas and best wishes for the new year
T
Cheers
Thanks for the reply, nice to hear from you
Have a great Christmas and best wishes for the new year
T
Merry Christmas to you, Tony, with good wishes for a happy and fulfilling New Year
Thanks for covering this subject from the point of view of someone dealing with the effects of stroke a while after the event.
Having a stroke plunges one into a darkness from which it is extremely difficult to get any perspective. Any light on the subject is extremely valuable.
There is plenty of second and third hand experience, lots of professional output, but most of it doesnāt āget itā. Actual hands on, been there, done that, information is not so freely available.
It is easy to talk about and discuss the predicament of others but not so many are keen to outline their personal journey and how they have, for good or ill, been dealing with things.
You can keep your medical and professional authoritative scribings. Just give me a few words from someone who has been there.
keep on keepinā on
That is very true - 100% agree
And the videos in the red amber and green set do reflect that problem of the professionals who donāt get it - but they are also a starter when one is faced with no personal experience and a desire to initiate oneās own recovery program - because as you imply the best recovery programs are the ones that we own ourselves, adapt to our needs, and include a focus where our deficits lie.
So we need our own firsthand experience shared
Again 100% agree - I hope we can encourage the community here to be coordinated a little bit to compile & curate the guidance that we all would benefit from and the means to be active peer support groups in ways we are not currently .
I have tried to share some of my personal journey in a way I hope is sufficiently illustrative that others can translate to designing their own programs - for example in Trousers ! MILESTONE ,
And
Today Cereal tomorrow coffee - upper limb
Some of the research stuff and the trained therapist stuff when filtered through our understanding can be adapted to be more useful to more people than would otherwise be the case. Examples in upper limb might be GRASP & CIMT -Which definitely needs visceral adaptations!!! & maybe things like Sense
To construct the best programs needs are selves engaged. There is an old saying that is if you want to go fast go alone if you want to go far go with others.
I want to go far.
Thatās why Iām here and have been seeking to raise conversation about how we can construct community initiatives around giving ourselves the sort of exercise insights but also continuing support that makes taking our self prescribed dosage easier . Almost 2 years ago I wrote on this topic on LinkedIn
Iāve asked a number of times if folk want to explore how we do things to help ourselves more than is facilitated at the moment
Anyone interested can continue the conversation in Peer support
Ciao
Simon
I am so pleased for you Tony, that youāve finally found a physio who can recognise that āwhere thereās life, thereās hopeā. And in this instance Iām talking about life in the limbs. If thereās some sort of movement then itās not dead. Therefore there is always hope of recovering some functionality. I find thereās nothing worse than telling a person what they canāt or wonāt be able to do from now on, doctors, physios, anybody. Negativity can be detrimental to a personās recovery, how much they recover. It can even hold them back from what they should actually be able to recover.
One sure exercise tip that requires no equipment and can be done any time, any place, anywhere, is:
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Flexing your backā¦clenching and relaxing the back muscles. Doing that will automatically start you flexing your abdominals, pulling them in.
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Getting your hips under youā¦tip/tilt them forward slightly when standing. That will reduce the amount of stoop you haveā¦which is what throws you off balance. So always get your hips under you when you come to standing before you move off.
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When sitting, sit upright for a while, with you back slightly arched, so your hips are thrust slightly forward. Hold for a time then relax and repeatā¦as many times as you like or can.
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Clenching and relaxing the buttocks muscles. They can be done while your sitting watching tv, waiting for the kettle to boil, every time you go to the loo
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They will all also start you flexing/clenching your hip muscles all aroundā¦front/back/sides.
Those 4 can be constant activities done throughout the day.
None of this āxā number of reps and sets and you are done for the day, I talking perpetual motion Because the more you do them the stronger your back and hips will beā¦and the easier it starts to become after a couple weeks. Thatās exercising and strengthening your back and hips for in readiness for walking with confidence.
Balancing tips
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Just standing still!
Straightening up you body. Getting your back upright. With your eyes openā¦with your eyes closed, turning your head side to side. -
Put a cushion on the floor and start stepping on and off it. You can use a walking stick/broom/whatever is at hand to steady yourself if need be. Thatās another one that can be done often throughout the day while youāre homeā¦even whilst watch tv.
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Stand on one leg! To begin with, just lift the heel of the opposite leg off the floorā¦you can even rest it against the ankle of the standing foot.
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Graduate to the toe tip just touching the floor. Then to resting the foot on top of the standing foot.
This is also a balancing act that can be done any time, any place, anywhere.
A progress test would be to walk around the house, carrying a cup of water filled to the brim, without spilling it. You keep looking straight ahead and donāt watch the cup whilst walking.
And hereās another way of doing itā¦or for progress to:
All the above can be done throughout the day wherever you are and whatever youāre doing. Make it a habitā¦thereās really no excuse not to! They waken up the core muscles and start getting them active again.
Just improving your balance will improve your confidence in walking.
Because, when you think about, you are always balancing on one foot or the other when walking. One foot is always coming off the ground as the other is landing. Get the balance right and the rest will follow 
I do hope you will keep us posted on your progress, I always love hearing about peoples progresses on here 
Yes quads are the obvious muscles that work, but my physio has concentrated on activating my Gluteus Medius while standing. Without it activating, the quads end up doing all the work, and your stability will suffer. My physio says that she knows someone who has stopped using her gluteus-med, and fell over because she was unstable (ā¦and she hasnāt even had a stroke). This is more likely to happen to women rather than men. Sit-to-stand can be done badly, or with better qualityā¦ a physio helps to ensure you are doing it well