Big boost from new rehab routine.

[pinkvision]

Hi folks, many of you know I have managed to retrain my cognitive functions, most of my sensory processing functions and had managed to get moderately fit physically.

Physically I have dystonia down my left arm, this is caused by motor neuron dysfunction in the brain and the symptoms include numb fingers, lack of muscle growth, lack of muscle movement which also affects blood and lymphatic flow. Basically the blood and lymphatic fluid does not pump out of my arm and causes oedema, fat swollen hand and fingers etc.

Exercising could help solve these issues but it was always a problem because I have cervical, thoracic and lumbar spine injuries - damaged discs, scoliosis, nerve pinching, nerve root damage and arthritis.

Every time I tried anything other than gentle movement exercises (which really helped) to get stronger my back would pack in.

In January I went to see the physio at the local stroke unit, I'm often critical of the services provided by my health authority, but this physio was brilliant. He did not come over all knowing but rather like an equal. Instead of going through set exercises we sat and went through what I was already doing and looked at the CT and MRI scans of my spine to see what was going on.

I already had a number of workout routines and we went through them and removed all the exercises that would cause compression of the spine and we designed a new set of exercises.

These combined qi gong, light weight training, circuit training, cycling, steep uphill walking on the toes and sit up/ leg raises and the plank.

I've been doing these for 5 days a week over the last 6 months and over the last few weeks I've had a huge boost and got my oomph back.

I was ok before but had continuous aches, pains and just went through routines without that real inner power. That power is now coming through, my body feels amazing and strong and my dystonic arm, hand and fingers are starting to function better.

On top of this I have a psychological boost and my cognitive functioning has also speeded up so much that my mind is flooding with thoughts and ideas on a different level.

I'm in my 60's but feel like a 30 year old in both mind and body.

I thought I write this in the hope of inspiring others to never give up and if you keep working at a rehab routine you will recover some or all of your functions.

This is something I've realized over the last 7 years, find a routine, understand what it's for and keep working at it. Commitment, discipline and focused resolve will win the day.

[Ideogram]

This is lovely to hear. Thank you for sharing. Have to say the physio at my rehab unit has been really reassuring too. There are some great professionals out there.

[pinkvision in reply to Ideogram]

Keep going and never give up trying

[Leaf100]

Wow, PV, that's great to hear! It's good to know that it's really worth it to keep trying until you find the right things.

Leaf x

[pinkvision in reply to Leaf100]

Yep, that's right, getting the right exercises in the right combination matters too. I was doing all the right things before but certain exercises were throwing a spanner in the works. By removing them and rejigging the routine it came through for me.

[Teazymaid]

great to hear it’s having a positive impact for you .. 😁 it’s amazing what can be achieved with the right kind of rehab and also doing the exercises .. I’m now seeing a physio for my leg weakness and hamstring injury plus a vestibular physio privately and I am already seeing the benefits and that’s after a few weeks .. 👍 I’m coming up 4 years after my TBI and it can still improve Sue 😁

[pinkvision in reply to Teazymaid]

Sticking with the exercises works wonders. The physio I saw said most of the people he works with give up or don't do the exercises. You just got to keep doing them and never give up and it will pay off.

[Teazymaid in reply to pinkvision]

Yeah I know it’s hard work to keep doing them but they do work .. I think that’s why a lot of people say physios are a waste of time .. but all they can do is give you the correct exercises to do ..when I had my accident my colour bone was In Half and out of alignment but they wouldn’t give my a general for the operation because of the bleeds on the brain the Rick was to high so I did everything the physio said and could even get my hand above my head while it was still in half 😁the exercises do work 😁😁😁😁

[Nafnaf87]

Good morning pinkvision

Sounds like you're having quite a lot of fun 🙂 doing the necessary.

Daily routine is very important for us all and it we can help anybody along the way so much the better.

Best wishes

Michael

[haverfordwest]

That is fantastic to read, it's so nice to hear of positive things happening. Obviously you have put in a lot of effort to get this far, many would have given up long ago. I'm so pleased for you that you are feeling better both mentally and physically. Hopefully others can find the elusive physio that listens rather than dishing out the same exercises for everyone. Wishing you all the best in your new found "youth".

[pinkvision in reply to haverfordwest]

Never give up, keep trying different things, you got to work at each one and give it some time to see if it works. 12 weeks is a good measure I have found and then if that one does not work find a new approach and try something else instead. Somewhere along the line something will work and cause a domino effect.

[Rosebud66]

that’s so good, you are an inspiration to us!

[pinkvision in reply to Rosebud66]

Thanks

[Letsrock]

Well done! Congratulations 🎊 on retraining yourself and understanding your body. You are very good. Thanks for all your input to everybody giving hope.

[TreesMTBI in reply to Letsrock]

Second that about giving everyone else hope with all your other posts too, PV!

[pinkvision in reply to TreesMTBI]

Thanks, that means a lot.

I realized after 9 months post injury that if I did not try to figure out what my injuries were and try to solve them that I would not recover.

I just set about learning what TBI was then kept trying different rehab approaches.

Most did not work but others did and I tried to understand why.

I learned about neuroscience, neuroplasticity and rehabilitation methods.

Then I went to uni to do a Masters research degree and studied my own recovery and 'did the science' to figure out why some rehab methods were working and other were not.

While I managed to solve most TBI issues, especially cognitive, the physical issues were always an issue because of spinal injuries.

I'm lucky because my new GP, 6 years post injury, sent me for loads of scans, xrays and referred me to a private consultant to explain what the spinal injuries were. In the end it was the physio that actually explained that some of the exercises I was doing were causing problems and by changing my rehab, a mixture of alternative and standard, the problematic exercises were removed.

I noticed minor changes after a few weeks and just kept going for months and it all seems to have worked.

I have ticked off the cognitive issues and now physical issues but there are still some visual sensory processing problems that is causing blindness in one eye and hypersomnia where I keep falling asleep or into a trance to sort out. I think they are connected somehow.

Luckily I have been referred to another health authority to try to solve this or give some idea of what is going on.

Funny how there are so many symptoms to TBI and they are all layered one on top of the other and I have realized that you have to solve one before you can move to the next one.

Getting these in the right order is a key for recovery.

I remember trying to work on recovering some cognitive problems and was getting nowhere until I saw an optometrist and after that, getting some of my visual issues sorted, the cognitive stuff resolved with training.

But everyone is different and what works for one may not work for another.

Thanks for the kind words.

[TreesMTBI in reply to pinkvision]

Yes the unpicking of symptoms is THE hardest thing. I spent 5.5 years trying to bumble along not really accepting or understanding it was TBI, without NHS as my accident happened abroad.

But finally went to GP 18 months ago when I had yet another breakdown trying to be ‘normal’. And the thing is, I’m ‘normally’ great at researching and getting on with finding solutions and working towards it, I make things happen- but that’s been part of my condition since the accident - unable to do any of it and follow through. I’m starting to pick through the symptoms but at snails pace as and when I get to it or remember to follow up or realise I haven’t done something - because I am autistic (recently diagnosed), I was very good at masking and powering through things and getting stuff done (even if detrimental to me) before the accident but the brain injury has totally messed with my neural pathways that I had built up to help me cope on top of all else, adding to the ADHD tendencies I have now 😂 although I’m (still) waiting to see Neuro Psych and for them to tell me that the ADHD stuff is from the brain injury which the autism assessor reckons.

Blimey, talk about a soup of symptoms we all have to deal with, and still so many other non-TBI people just don’t see it or get it. BUT your work PV, DOES help to get the message out. Thanks again.

[TreesMTBI in reply to TreesMTBI]

‘A soup of symptoms’ sounds like a poem or short story I need to write for our creative group that Lucy has set up 🤣

[pinkvision in reply to Letsrock]

Thanks

[Nemo24]

Great news 😁