Hi, the last time I went for a reassessment of cervical and thoracic spine exercises I asked if they had a video of the exercises because it is easier to follow the instructions when you see it. Usually it comes on a sheet of A4 paper. Amazingly the physio said no problem and emailed me video instructions.
I thought that was great but the format is unshareable.
I recently came across this video of exercises from an NHS trust in Rotherham.
This is such a good idea in my mind because rather than waiting for a rehab slot you can just get on with your own rehab whenever you want. Unlike the video I was sent this one is on YouTube and if you read the comment people from all over the world are using them not just people in Rotherham. This and a couple of others were made 8 years ago but then stopped.
Would you or do you use rehab exercises on YouTube whether they are from the NHS or not?
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While I was waiting for my initial appointments I searched for Canadian resources on the assumption that Ice Hockey injury rates had probably created a huge knowledge base and behold..
I followed some of the easier ones and felt I was able to get on with some basic rehab exercises very early on as well as gain an understanding of what the causes of my balance problems could be along with the likely mechanism of fatigue with this type of injury.
When I got to see a vestibular regab physio a short while later (private health insurance!) they pretty much gave me the same exercises and explanations that I'd seen online.
The difference though is that they were able to check my movements closely and fine tune the exercises appropriately for my state at the time.
So yes, video rehab delivery is an excellent medium but as we all have slightly different impacts on balance etc this needs to be managed carefully so as not to force over exertion early on.
But as a principle online delivery is highly desirable imo.
Do you look for different places to get rehab maybe on YouTube. As in the video from the NHS at Rotherham which is on YouTube, because there are plenty especially from the US and Canada, different health systems but rehab all the same.
Would have been helpful to have found advice and help regards type of rehabilitation needed AND available 26 years ago and that remains the case today.
I think my brain is like many here, I may be extreme because of my events I may not, filled with fear, sometimes extreme fear. I know it is not rational but apart from the normal stuff, when you've lost your home and business once at the start to your wife and then 21 years on lost your home and your business again but this time to the people (family) who picked you up rationality and trust goes out the window.
When the system aids those events the fear and terror created is not easy to control - I have a different me perched on my shoulder looking down on all this, you could not make it up, who just pisses himself laughing at the ridiculousness (is that a word?) of it all.
As you are aware I live in area with a Health Authority unable to get out of Special Measures after more than a decade, a Health Authority which (I think) accidentally paid its Chief Executive £180,000 too much allegedly due to a clerical error. Our Brain Injury Service is under huge financial pressure and is unable to offer a proper service to most "clients" (god I hate the use of that word) but amazingly it is now 100% better, at least, than all the time since its inception circa 1998.
This summer I have been lucky, I am getting weekly input from a trainee who is lovely. It's a good deal, she's getting experience to help her help others in the future and I'm getting help and support with the fear thing. Is that rehab?
That's psychological support. I'm under the same health authority as you and at the moment all severe BI's get sent to other health authorities, people with strokes can now get support as 3 stroke centers have opened over the last year or so but mild to moderate TBI's or those out of the serious class still I'm afraid get no rehab. It's interesting that you get psychological counselling, that was not available when I was there. Things are moving on.
As far as I can understand the whole thing is now being focused on the psychological approach - this is likely correct imo and I'm hopeful will lead to better outcomes for those who come after me/us. I gave up with the previous consultant (who you are probably aware of) who is a really nice guy but has zero empathy with the head-injured. He always told me he would help me and at the point I really, really needed it i.e. when the shit hit the fan with my family at the same time as Covid hit everyone nothing, zero - "do you want to join a gardening group?"
As I now attend that site twice a week at the workshop I offer my help occasionally with the garden but it's not really for me - too many wonderful memories of the garden now gone bad.
Basically if anything can be moved forward for the benefit of those coming in the future, brilliant, I will do anything I can to help.
The other thing about this area is we are in the middle of nowhere - Walton were in charge of me in 1998 even though I was in ICU in Glan Clwyd - I was severe at the time, GCS8.
The mental health support in North Wales is a joke. Whenever I mention it to anybody the reaction is always the same as mine, Nant-y-Glyn haven't got a clue what they are there for.
Ok, so if there were videos that explained what your injuries were, how they affected you and how you could recover would you watch them and do any exercises that were offered? Say if the NHS had a central library of this kind of content would you use it?
I continue to try anything and everything suggested. If it works in how ever small a way I am so happy it's untrue and keep going. If there is no benefit for me I discard but will not criticise - we are all aware with brains everybody reacts slightly differently to just about everything - we have to be prepared to try and if necessary make adjustments to suit us.
One thing this journey has taught me is to be inquisitive and as Dr Pam would say be curious about everything - no two brain injuries are the same and nor are reactions.
i was given exercises from a physio for my neck for ABI related injury via an online link but it was too early for me to be able to actually login to it with the given password. My brain was far to fuddled at the time. My helper was no help with it because there was too many other things going on in the aftermath of surgery and my limitations. Hence I never got to see the online exercises. I had been shown them at a first appointment face to face but could not remember them!
Since then I have found that I have very little motivation to successfully complete online things which is also an issue. I fit in only a small few tasks daily due to fatigue and implementing additional things that would help me is really hard.
I'd imagine many practitioners offer it online so that patients can make progress in between appointments, or just follow online exercise as their treatment plan.
Hi Catrabb1t, not seen you here for a little while. It seems that it is only you and me that has been given videos for help or rehab. I had to ask for them, but you were actually given them, but as you alluded to you were not ready for them and even now only managing a few tasks. Did you try any of the physio from the videos at all?
I work on the assumption that neck exercises are fairly straightforward so I am guessing I have not missed much from not seeing them... Honestly, no I have not done very many and it is not part of my routine. I have actually made a little note just now to at least do a few basic movements. I think I can phone them and ask to be reseen if needed. I do worry I am neglecting the muscles as they get stiff. The physio sent me for some detailed scans so I at least know it is muscular and nothing more sinister.
Jugglinging life is so damn hard timewise and energy wise. I even forget to log on to here becasuse i end up in a haze of tiredness. i am also juggling depression. But it's not all bad, I feel fairly content, or at least accepting of the situation, as strange as that may seem! I have limitations and until this fatigue lift i cannot do more. I have a chronic fatigue appointment coming up soon... i am going with hope but i cannot think how they can help as ive already had very good OT rehab home care around it...
Hi, thanks, I'm all good, pretty much everything fixed cognitively except a little sensory processing, spinal issues and aphasic narcolepsy (which is a pleasant experience). I was wondering about your fatigue because you had covid about the same time as your injury and there was something about it on the news today. They were linking the fatigue to an immune response caused by covid. But we must not forget that it may be the brain injury or even both together. You'll probably go though this on your appointment. The other thing I was going to say was did you get your hormone levels and vitamin levels checked because I did read on here some people had deficiencies in these and when they were corrected their fatigue and depression improved. May be scribble this down and take it to the appointment with you as a reminder to ask them but they will probably check anyway, but do it just in case. Fingers crossed it all goes well.
Thank you for your thoughts PV, you are a font of wisdom and knowledge
I had to fill in a very long set of questionnaires for the appointment. I forgot to tell them I had covid whilst in hospital. I will talk to them. By the way, this clinic offered me online sessions to be seen quicker but i opted for face to face because i need more time to give replies and find it harder to do this online if the other person goes too fast.
I had bloodwork done for my vitamins etc and was deficient in only folic acid which surprised me as my lifestyle has changed so much. But good news nevertheless! I am unsure if i have had a proper hormone check. Whenever i talk hormones with the GP it is always menopause related and nothing more... I take HRT to balance out... I find the whole thing totally confusing because of the haze of tiredness. I can be on here tonight because i logged on immediately after a 2.5 hour sleep.
Good to hear you are going well. IS your sensory experieces still related to your eyes? I cannot sit in rooms for long that have open curtains. Im a party pooper and feel more comofrtable in a cave. I get around it by wearing sunglasses but sometimes even that doesnt help....
Make sure you have a list of everything you need to say for the appointment.
Interesting you use sunglasses which help to reduce the fatigue which means your visual processing may be dysfunctional. You may have had an eye test and have been told there is nothing wrong with your eyes but have you had an optometry test which assesses the visual processing in the brain. I went down this route and 40% of my fatigue reduced instantly after getting precision tinted lenses. They filtered out certain wavelengths of light that my brain could not process. I had three pairs of tinted glasses over two years and the processing corrected so now I see normally. Each pair reduced fatigue even more. I now use neutral grey transition lenses to reduce the amount of daylight coming in. I only need them on sunny days.
You can't get tested for this via the NHS but you can get it done privately here are some options
Was the best thing I ever did and by getting this done it opened the door for everything else to get fixed.
I keep sharing my experience about how this worked for me and keep sharing the links to optometrists but I don't think anyone goes to get tested and keep saying they have visual issues but don't do anything about it.
Thanks for the info. I feel ready to follow this up now. I have read through your three links. It is useful information and without it I wouldn't have found that this service exists! There aren't many behavioural optometrists nationally! The BABO map shows my nearest and it is a terrible website with no mention of anything other than typical eye tests. The next closest does mention the specialism of brain injury but it is only the owner so I will phone to check I get her if I make an appointment.
Am I correct in saying the color vision lenses is a separate specialism from the behaviour optometry? Or, would the behavioural optometry incorporate it?
I'll have to return to it. Tired after reading all about it on my google searches of what is nearby. Thank you for sending it to me.
Hi it's incorporated. Trust is definitely a factor in choosing an optometrist. I just struck it lucky when I first went to see someone called Janet Green, she was amazing, did multiple tests and explained what was being tested etc. I went to see a different one to see if I could get more out of it, but this one did not seem to know anything and was getting confused about the testing system.
Cardiff University I would say is the best bet because they will have a structured approach. I don't think they express brain injury in their webpage (I may be wrong) but the tests are the same in many cases. They will test your eyes and your visual processing. The eye test is covered under NHS and the optometric tests including colorimetry are about £150 from what I can make out. You may be able to get this even cheaper if you allow a third year student (cardiff uni teaches and trains optometrists) to conduct the tests, they are supervised during this, the website says this.
When you consider from what Leaf 100 has said about the cost of these tests in Canada where they pay $4k and its similar in the US getting tested for £150 is a steal. You always have to consider that it might work or it might not work for you. I thought about that and decided to go anyway, what did I have to lose, only some money, but it turned out to be the best thing I ever did and got my rehab up and going. It kind of opened the doorway and the rest of my rehab went well.
Thanks! Thats how I feel too about it might not work out for me but it is worth a shot. I have found one that looks very good in York and it a lot closer than Cardiff. Their website is well laid out and is for issues beyond eye tests. There is even a tab for brain injury! Take a look if you like. The website goes in to detail about processes. There are podcasts about the journey of users. For example the one about the man who had a stoke (looks to be in his 30s) got a prism put on his lense and his right side peripheral vision returned which brought normality back to his life.
That site looks to have the full spectrum of tests. It seems to focus mainly on yolked prisms, which is the same system that was used in the book 'The Ghost in my Brain,' personally I was corrected with tinted prescription glasses from the Cerium vision technology assessment. however they say Meares Irlens assessments are used on their site. It's pretty much the same thing. You might want to ask people who use prism glasses on the 'Ghost in your brain' Facebook page. facebook.com/groups/4786653...
You will have to check how much all this is going to cost because a trip to cardiff may be the cheapest option by far. Then if you don't get any improvement from them try the York one. Just thinking about cost effectiveness, Cardiff tells you the cost on the website, York does not.
Different optometrists use different methods and the methods used in Cardiff are UK standards. Just something to think about.
Allways remember it may or may not help, so it's a test and see what happens kind of thing. If it works it will change your life; if it does not you can rule it out.
Hi no probs, there are only a couple of them and they are old and very child like. Here's a link for up to date stroke rehab exercises from the US youtube.com/@rehabhqofficial
I'm currently using YouTube video exercises from my physio.
I generally veer away from YouTube for other things (think I find it too frustrating and get impatient with all the chatter at the beginning, but I've noticed a lot of others like to learn things from there, mostly blokes for some reason). I can't really think of a better format for this though.
A couple of months ago, though, I probably would have really struggled with the screen, and I hate having to dig it out again rather than tape instructions to my fridge, so maybe that's why it's not more popular-? Not sure how common the screen intolerance is. Agree I also really struggled with passwords and having to jump through umpteen hoops to access things - a notable low point was the rage at failing the, 'am I a robot?' test...
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