Headway

Can’t let go

My ot came and I said I felt as if I could do with some more physio as I’m walking without my walking stick inside and he says it increases my town in my arm and makes my balance not good so that’s why I asked for help but he said I’d exceeded tthere expectations and that mybleed was big I should be happy and proud that Ican walk with a stick as they said I wouldn’t even be able to do that so there not always righthesays I’ve reached my peak and there’s nothing they can do for me I just feel there stretched and want them off there

It’s, what drove me forwarding hospital was to walk and it still is, ifeellike screaming, I’ve looked intoprivate neuros phsios but there so expensive, surely there’s only me that knows if I’ve reached my peak, I know someone just prompting on what todo would help me

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At least you had a physio for support. Following my TBI 50 years I had nothing. No support like it is today, nothing. I walked badly to start....crablike. Now I walk ok but always drift to the left I'm told.

Yesterday, following major surgery on my left leg to deal with the loss of my quadriceps tendon in May, the surgeon told me he didn't want to see me again and there was nothing more he can do for me. I am still on a stick and a leg brace and that is after the physio has told me she doesn't want to see me.

Its not the end of the world; my life continues much as it did but with the added luxury of getting a seat on the bus, tube and train.

View your problem positively, at least you can walk when there's plenty of us who are bed bound.

My mother was told I'd likely be in a vegetative state if I achieved any sort of recovery - well I'm clearly not; the neurologist I saw in 2015 told me I was lucky to be alive at all. The same applies to all of us I think.

Its worth remembering that Physios and others on the peripheral of main care are in short supply so have to divide their time fairly.

Incidentally, both the physio and the surgeon have told me they can do no more for me but I am glad for what has occurred. I will probably start walking without the brace and crutch after winter and normality is taking a little longer.

Far from harping on about their statement of being no longer being able to help I'll move forward under my own steam and achieve the result I want. What is apparent is that the health professionals are just that. They know more about my condition that I do and are prepared to say so.

In today's pathetic litigious society they have to be right........................

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If they aggree that you have exceeded their expectations already then they should realise that you can do it again. Sounds like a resource issue. Maybe you could put your request for more OT in writing and then they might find it harder to say no. Maybe could also get say GP to write a letter in support.

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I was told something similar so went down the private physio route I didn’t keep it up for long as it was too expensive I found it very helpful though

They just have such limited resources and overstretched

This does not make it right but if you can’t afford to fund yourself you are not likely to get any physio!

I would love my private physio but can’t afford it I just try to keep as active as I can so my muscles don’t get too tight

I was actually referred to the generic physio team because I demanded and demanded more physio and they said they could not come out to see me anymore

So gave me that as an alternative

And I basically just got referred back to the neuro team and. It is just a big waiting game. Its nice not feeling wanted isn’t it!

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Oh I was actually told once I probably get some pain because I do so much

Apparently it’s the price to pay for having an active social life

I was in my 20s at the time I wanted to do the same as all my friends what’s wrong with that

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Push for a referral to neurophysiotherapy.

If you have come this far no one knows what else is possible.

Make sure it is safe for you but you could practice using a walking pole in the house. It acts like a training wheel on a bike and you are much less likely to lean on it.

Keep up the good work.

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Well done for your determination Dynamite! Yes you should be proud, but that doesn't mean you must stop trying do even better. I've 2 points:

1. My OH had brain haemorrhage and surgery followed by brain infections, and like you was expected to be in a wheel chair. I persuaded him to pay for private neuro-physio when he came home unable to walk a step without holding on; he said he couldn't afford it, I said he couldn't afford not to. He has a fantastic lady who comes to the house, at first fortnightly but now down to once every 6 weeks, and she shows him balance exercises to do every day. They have made the world of difference, and he now walks without a stick indoors and can take his dog for short walks in the fields using his stick (which was his main recovery aim). And he's still doing exercises 2 years on, she makes them more stretching every visit. When we saw the neurosurgeon 6 months post-op, he was stunned that OH walked in rather than being wheeled in! The neuro-physio charges £70 per visit, and lives near Shaftesbury. We are in Hampshire near Andover. If anyone wants her details then let me have an email address or phone no. If you're not in that area, do some research and might find someone similar.

2. After my knee replacement the NHS physio at 6-week follow up said the angle I could bend my knee was satisfactory. I said no, it's not satisfactory to me, I need exercises to get it bending more than the 90 degrees she was looking for. But no, 90 degrees ticked her boxes, end of. So again, I scraped some pennies together to consult a private physio, only needed to go twice for exercises to do at home, and achieved a bend that I am now happy with.

So I'd say, beg, borrow or steal - well, maybe not the last - to consult a neuro-physio who has lots of experience with your condition. He/she can at least point you in the right direction, even if you cannot manage to pay for regular visits. Good luck!

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How can anyone know when YOU have reached your peak, it’s only YOU who can tell, and YOU who does all the hard work. I have just come out of hospital after another knee op my fifth on the same knee, three knee replacement which did not work and eventually a revision knee replacement, still had problems so another op and this time they have just removed so much inflammation which had built up around the implant. Mr Spencer Jones said it was the worst case he has dealt with so I’m in recovery. My foot is splayed and will remain that way. But, at least I can just about get around with the use of a crutch and a mobility scooter.

Just seen the doctor and after having made a double appointment as when you go to see the doctor and speak about more than one problem you are told to rebook and come back so a double appointment was needed. I asked her about to my tremor and TBI. she asked me how long it was since my accident and I said two years she was so dismissive, that I could have cried. I also asked her if I can carry on taking my HRT she said NO. I told her I have enough to cope with without hot flushes and night sweats but she is adamant that she will NOT let me have any- more HRT she said it’s because of my age. Also my tremor will get worse as time goes on, I cannot cook without burning myself ( have battle scars to prove it) but she said NOTHING can be done. So flustrated, so I can sympathise with you. When I returned to my car and just cried, why can’t she see I could do with some support. Sorry for the ramblings just feeling so down and despondent.

About your walking have you tried power walking in a swimming pool, my physiotherapist said it strengthens the muscles. Take Care Liz

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I would recommend joining a BI group headway being main one in UK. If you are in East Riding of Yorkshire i would definitely recommend the group I go to in Hull. I started going to meet people after pretty much recovering fine but not having many people in my life. The man who set it up is into fitness and staff encourage people attending to do walking/running all they can. I have just started personal training sessions with the man who set the group up. Which is something I never even thought I would be bothered over, but it’s getting me out and giving me something to focus on as well as having people to spend time with. Sounds like what this group offers is what you want too.

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This was Physio in the hospital? And how long ago?

Like others I think it’s probably acesss to services rather than lack of need at least it sounds like it.

Very sorry to hear this, I’m at Rehab (outpatients) at moment and thus far they seem quite can do, I’d assumed that the Physio would have a we look and pass me by since I’d seen by a Nero Physio in the Community a few years back, but she is quite can do, and wants to explore some treatments.

Essentially the service you had/having doesn’t need to be so I think your right to see if you can access this. The question would be though which channel, this also is something Headway groups are good at.

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