from Brands Hatch, had a stroke when he was 2. Now he is training with the Director, Tom. Kane is doing amazingly well, and in three weeks of training has found his hand movements have become significantly smoother, and worked up to lifting a 50kg dumbbell from the floor for two strict deadlifts the other day – incredible! Go Kane!
Today I thought I'd tell you about 5 of the most unusual and rare after-stroke problems. Do you have one or more?! While most survivors focus on the traditional battles with mobility, a small number must navigate bizarre neurological territory such as Alien Hand Syndrome, where a limb moves with a mind of its own, or Foreign Accent Syndrome, which can suddenly alter a person's entire identity through speech (I did a post about this btw, in December 2025 on ARNI Stroke Rehab & Recovery here).
Others may experience Prosopagnosia, the distressing inability to recognise familiar faces, or Alice in Wonderland Syndrome, which causes limbs to appear wildly distorted in size. Perhaps most unsettling is Cotard's Delusion, a rare condition where a survivor genuinely believes they are deceased or have lost their internal organs. 🧠🎭
Statistically, these conditions are incredibly elusive, affecting significantly fewer than 1% of the stroke population globally. Because these symptoms are so unconventional, it is estimated that only a tiny fraction of those affected actually seek to tackle them, often due to the fear of being misunderstood or the lack of specialised clinical awareness. At the ARNI Stroke Rehab UK Institute, we understand that whether a limitation is common or exceptionally rare, the underlying principle of neuroplasticity remains the key to retraining the brain and regaining a sense of normalcy. 🦾✨
The ARNI Charity is committed to supporting survivors through every hurdle, no matter how unusual, by providing the evidence-based strategies needed to adapt and overcome these complex neurological shifts. While these specific problems are very rare indeed, we know that for the person experiencing them, they are a daily reality that requires immense resilience to manage.
Dr Tom asks: do any of our readers suffer with any of these unusual limitations, or perhaps something equally rare? If so, please let us know in the comments below how you cope and what has helped/is helping you find your way back to stability. 🤝🌟
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It should get better with time
I had prosopagnosia for the first few weeks but it’s quite mild now and reasonably manageable
I’ve got the same problem can’t really go away anywhere peg fed because of dysplasia trouble swallowing it his caused me to have pneumonia twice doctor literally giving me the last rights told him I’m not giving up so don’t you still fighting stay positive I know it’s hard but never stop fighting
I’ve lost my sense of smell, totally
Just the sort of article to cheer to up !🫣
My wife tells me I talk in my sleep with a spot-on Liam Neeson impression!
In ICU., a Dr. came and he said that I was talking French..I'm 70 years old and I took French when I was around 12 or 13 years old 1 years only and never speak it again
stroke left me with this Hemiballismus in stroke is a rare, hyperkinetic movement disorder characterized by involuntary, violent, flinging movements on one side of the body, usually resulting from a vascular lesion in the contralateral subthalamic nucleus or basal ganglia. While often caused by lacunar strokes, it can also arise from cortical or thalamic infarcts.
Wow I thought I was the only one! My GP does not understand my symptoms. (1) my left affected side especially my had feel like a dead man hand or alien. Feels numb still when touched even after 3y. (2) the sensations in my left affected maifests on the opposite side for example. If I get a flu jab on the left arm, overnight I feel the pain on my right arm!! Which is puzzling! (3) my previous trauma on my left affected side especially side is left on my right side on occasions for example, I had a motorcycle accident pre stroke when I was a teenager, I feel the itch of my scar on my right side and end up scratching it. Is my brain all messed up after my right side MCA infarct blood clot?? Can you help me/ my condition?
I now get a runny noise if I eat hot food. Not spicy hot, just hot
I suffer a lot with dizziness and afraid I’m going to fall I also cannot walk with out aid ie zimmer frame On a good day not very aftern I try to walk around the bed with out help resting my hand on bed
My husband has had a stroke which didn't affect his arms, legs. It has affected his reasoning, decision making, problem solving, perception. Also his gastro intestinal system, his tummy is very loud, he's very windy, food goes through him too quickly. He's lost weight. He won't leave the house because he feels that he is about to soil himself. He says the feeling in his bum comes on urgently, uncontrollably. It's a huge task to clean himself afterwards now although we have a bidet toilet and he can wash the area. There is now particular frequency. He will hold on as long as he can to avoid going. I can't reach that part of his brain. He doesn't feel hot\cold, full\empty. He has weird beliefs, all negative. I can not get him to appointments. X
Most people end up finding it much easier and more efficient just to invest in some equipment and exercise at home daily rather than going to a gym. Stationary exercise machines such as bikes are great for this.
Those that are known as recumbent or semi-recumbent bikes (depending how reclined it is) would be my first choice for a ‘beginner stroke survivor’. These types of gym bikes can be picked up relatively affordably from a variety of places and often aren’t cheap but they hold a considerable re-sale value.
You can even prop your ipad on the display ledge and watch videos or listen to music to help the pass the time. You might possibly find it difficult to keep your more-affected foot on the pedals due to weakness and/or loss of feeling and sensation in your legs. If you’re experiencing such problems, look at the internet to see if you can get a customised pedal made. This kind of job is often most efficiently carried out by a clever bicycle fixer in a dedicated bicycle shop or even a mechanic or engineer. Such people will be really great at problem-solving and coming up with the best device for you. If all else fails, it’s even possible to adhere trainers to pedals and slip your feet into them! Trainers with strong Velcro tops work well for this.
www.arni.uk.com #strokerehabilitation #strokesurvivorscan #neurorehabilitation #strokerehab #neuroplasticity #strokerecoveryexercises #exerciseafterstroke #strokeexercise #Neuroplasticity
A friend of ours, one of life's problem solvers, adapted Harry's bike when he first came home from hospital. He has a new bike now and has learned to manage his right foot well without an adaptation. A great form of exercise.
The step one from sci fit is one of my favourites and they can be pretty cheap second hand
Peer support offers encouragement and makes it fun. Try aquatic therapy
My son uses a cable tie to secure my paralysed left foot to the peddle and it does work ,
We have over 140 highly qualified independent therapists and trainers around the UK active & available for you at any one time, trained via our Functional Rehabilitation & Exercise Training after Stroke Qualification. Call now to find your therapist or trainer.
ARNI supports the work of the hospital therapists by supporting YOU when your care pathway ends.
Call 0203 053 0111 or email support@arni.ukcom
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6 TARGETS YOU NEED TO HAVE AS GOALS AFTER STROKE
Even if you have hired the help of a trainer or a therapist to get you started (advised), you must have input towards your own rehabilitation and the way you want to go. Knowledge is power.
My aim is to show you exactly how to achieve 6 things:
1. Correct balance, co-ordination and posture over time
2. Increase muscular, tendon and ligament strength and fitness over time
3. Decrease spasticity and increase specific functional movement return over time
4. Increase confidence and remove fear of the consequences of exercising
5. Become progressively more self-sufficient
6. Become productive in an occupation and be happy with life
Can you take up the challenge? They can all be achieved by you to a certain degree, however old you are, if you want them badly enough and are prepared to sacrifice time and effort. Can a generic programme be created? For example, is there one ‘programme’ that will fit everyone? It would be much easier that way, right?
The simple answer is ‘no’. There are many things that all stroke survivors must do, and many things that most need to do. You will start with basic tasks in order that you can work towards more complex tasks.
Everything you do will rewire your brain: by doing more, you develop more motor control and gain strength. You will ‘get nothing by doing nothing’.
Please understand the degree to which brain repair, neural rewiring and neurogenesis happens can be influenced long after the short therapeutic window after stroke may close.
The longer you’re a stroke survivor, the more you’ll notice that you can ‘win’ or control (manage) many of these but others will have to be accepted. And, I have to tell you, that re-training efforts can never stop.
Long term stroke survivors will be nodding to themselves. New stroke survivors will get to understand what I mean. The good news? ‘Retraining’ can very soon phase into an enjoyable and social physical activity wherein you are actively rehabilitating.
#arnistrokecharity #stroke #strokesurvivors #neuroplasticity #strokerehabilitation #neurorehabilitation #strokerehab #neurorehab #strokesurvivorscan
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Good Lord Pam - I look like Saturday night right there- heheheh! Tom
Tom is my saviour, guided me through every step of my recovery journey through his amazing book- The Successful Stroke Survivor. 💕
I worry all lack of cardio exercise I exercise myarm shoulderdailybutcant get my heart pumping any thoughts please would be appreciated thanks
20 months post stroke(June2024) right posterior occipital stroke and mild left temporal lobe damage. 34 at the time of stroke. Lost my left peripheral vision field in my both eyes. Suffered severe panic attacks and health anxiety. Panic attacks subsided 4-5 months post, but I still suffer with extreme anxiety, nerve pain, vision loss which I will never regain back. My body is in complete fight or flight, nervous system and autonomic system is fully dysregulated. Headaches, dizziness,nerve pain, etc. No underlying conditions,tests were normal, had a large PFO that was completely open, had that procedure in November 2024. Had a 30mm device placed in my heart. Fully closed when I went for my follow up in May 2025.
10+years post stroke balance issue Using rollator Left side weakness
Thank you
I’m not progressing at all left side totally gone
The Stroke Whisper 💪🏻
Wise words and true!
X
I am willing ,just tell me what to do I have high spasticity in my left limbs
What do you do about 24/7 vestibular problems?
Here, our stroke goal can determine the amount or type of of rehabilitation. From peer support most want more rehab always request more and when asked always give or reply should be to be back at baseline hence my advice is to reply in writing, dated, when asked. Some hospital therapists will take the goal and step it into smaller steps. Reach one - no more therapy.
Iam hemorogic stoke surviver, six year back its very difficult to live, 😌😌 its better to quite 😌
Hopefully you have practiced a lot of the exercises presented in the first online video and are progressing more and more with your home rehabilitation!
By clicking on the link you will find the second video to continue your journey towards recovery, efficiently and quickly.
When doing the exercises, please always make sure that you can exercise in safe conditions and have help if necessary!
As you practice, make sure you don't move on to the next exercise until an exercise is going well.
When you're tired, relax!
Each video will provide effective help and advice on how to work on your rehabilitation.
ARNI is the only method that can achieve rapid and spectacular improvement. With persistent practice, you can experience this for yourself!
arni.uk.com/product-category/arni-reco#StrokeRehabt#neuroplasticityp#StrokeRehabilitationb#neurorehabilitationb#neurorehabn#strokesurvivorscanr#strokeexercisek#strokerecoveryexercisesy#exerciseafterstrokefterstroke
s The evidence base shows that you MUST perform some exercises routinely to help yourself to recover well. But what do you actually do?? in the Successful Stroke Survivor online videos Dr Tom Balchin shows you the best (most generalisable) strategies from the best-selling manual The Successful Stroke Survivor.
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#neurorehabilitation #strokeexercise #arnistrokecharity #neurorehab #StrokeRehab #strokerehabdvd
Seb Trigg
A review of Successful Stroke Survivor book:
Following my traumatic brain injury, I was determined and relentless to get back on the road to recovery. For guidance on the road to functional recovery and alongside my physiotherapist, this was the book for me. Tom Balchin details the latest evidence based techniques and ARNI approaches to help recovery. I found particularly useful the ways to help reduce spasticity and decline in upper limb as well as how to regain hand and finger function as well as strengthening exercises for lower limb function. Through such detailed and informative advice, married with clear illustrations you are taken through detailed text involving key concepts such as brain plasticity followed by the steps to retrain your affected limbs for the purposes of functionality. For example, to get up from the floor. If you stick with Tom's methods and practice practice practice, you are sure to see results! I even followed this with a session with Tom himself! Absolutely great!
www.strokesolutions.co.uk/product/successful-stroke-survivor-manua#StrokeRehabilitationa#neurorehabilitationa#StrokeRehabr#strokerecoveryexercisesc#exerciseafterstroket#strokeexerciser#strokerecoveryo#neuroplasticityi#exerciseafterstroket#strokeexercisercise
Matt Kidd’s remarkable recovery in 2026 serves as a professional-grade reminder that the perceived plateau in stroke rehabilitation is often just a lack of available rehab intensity mixed with a bit of appropriately applied tech (if one can get it). After suffering a second stroke in 2021 that left his left side immobile, Matt spent years facing stalled progress and felt he had reached a permanent dead end.
However, following a pioneering procedure in July 2025 where UW Medicine neurosurgeons fitted him with a first-of-its-kind brain stimulation implant, the impossible has become reality. After just months of stimulation paired with six weeks of targeted therapy, Matt has regained the intricate fine-motor control required to pick up a cup, fasten a nut to a bolt, and even close a shower curtain independently 🧠🦾
This breakthrough perfectly aligns with the mission of the ARNI Stroke Rehab UK Institute, which has always championed the idea that the brain retains a latent capacity for re-wiring long after the initial event. While the ARNI Charity works tirelessly to provide survivors with the specialised physical strategies needed to drive neuroplasticity through high-repetition practice, Matt's story proves that combining such grit with neural stimulation can unlock entirely new levels of function.
For us survivors, this success is a call to arms to never settle for a 'dead end' and to continue utilising evidence-based training to bridge the gap between clinical stabilisation and real-world, meaningful independence ⚡️🧤
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#ARNIStrokeRehab #Neuroplasticity #BrainImplant #StrokeRecovery2026 #FineMotorSkills
Hi Marilyn - yes, it was carried out at UW Medicine (University of Washington Medical Centre in Seattle -whose neurosurgeons Jeffrey Ojemann and Jeffrey Herron implanted an experimental brain device in a stroke patient to assess whether targeted electrical stimulation can help the brain rewire itself after injury. The CorTec device consists of thin silicone sheets embedded with tiny electrodes, placed on the surface of the brain over the stroke-damaged region. During rehabilitation sessions, the device stimulates the injured brain region while patients attempt specific movements, a pairing researchers believe can strengthen neural connections beyond what rehab alone typically achieves. Btw, Matt Kidd got it because he was the first patient enrolled in a safety trial of the experimental implant...
That's very encouraging. Do you have any information on where the procedure was carried out and how Matt managed to get it please?
Wonderful! Can they please research something to combat neurofatigue next?
Can it help with Aphasia?
Have YOU got aphasia?
Approximately 40% of stroke survivors experience this difficulty: to comprehend or produce spoken or written language caused by a cerebrovascular accident. In half of these cases the language impairment still persists one year post-stroke. Aphasia has wide-ranging effects on the ability to function and quality of life of stroke survivors and easily leads to social isolation.
If you need help, ARNI SLT Telerehab can now help YOU, right now, wherever you are in the world!
The latest evidence shows clearly that you can conquer aphasia very successfully with the help of speech and language therapy.
And it also shows that SLT Telerehab is just as effective as in-person, face to face treatment.
We have a team of highly experienced low-cost specialist SLTs (all post-grads from Universities such as UCL, the University of Cape Town etc) who are available to help you right now, in your home, via Zoom. You get a one to one hourly service, based around your diary needs, from the comfort of your own home, with a highly experienced specialist speech and language therapist. Please enquire to arni.uk.com/get-remote-speech-language-help-now/ !
#aphasia #strokesurvivors #strokerecovery #StrokeRehabilitation #StrokeRehab #aphasiaawareness #neurorehabilitation #arni #exerciseafterstroke #strokeexercise #strokerecoveryexercises #neuroplasticity #ARNIstrokerehab
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GET SPECIALIST SPEECH, LANGUAGE & COGNITIVE THERAPY WHEREVER YOU LIVE | ARNI
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‘Mum had severe aphasia after suffering a dense stroke which has also left her unable to walk, with her right side paralysed. We were terribly disappointed by the lack of therapy she received to dat...
A look-back 23 years! One of the first ARNI Posters from 2003 - featuring Dr Tom and Dave Waters. Dave (my martial arts teacher back then - 7th Dan) and I started ARNI and Dave retired after 3 years mainly due to the long distance he had to come to get to the premises. Great times.... who remembers him? Tim Wells and Margot Montague will - and Leiske will too if she's on this board...
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