subarachnoid haemorrhage rehab question

[sadiepup]

Hello,

I'm new here and I'm caring for my mum who suffered an SAH at the end of July 09.

While in hospital she contracted ventriculitis and sepsis. She was unconscious until end of October 09 and was finally allowed home from hospital in December 09.

She had about 6-8 weeks of physiotherapy at home but they have now discharged her saying that they cannot do anymore for her. They said due to her short term memory loss and low concentration levels this is how she will be for the rest of her life.
She cannot sit up, is bed bound and has to be hoisted into her wheelchair.

They physio team tried 3 times to get her standing using a combination of a rota stand and standing hoist but with no success. After that they gave her a balloon to hit back and forth (and some other games) for about 5 weeks. We did have one lady come in to do exercises with my mum but if she was in her chair the physio would just use the balloon?? After half hour she would leave.

Our family has basically been left to fend for ourselves with regards to physio and any sort of cognitive rehab.

My question is what neuro physio exercises can I do with my mum to help with her sitting balance and to build strength in her legs?

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[gcoe]

Hi Sadiepup

Sorry to hear your mum has had such a bad run medically. It is devastating enough to have a haemorrhage but then get an infection on top of this...

She had about 6-8 weeks of physiotherapy at home but they have now discharged her saying that they cannot do anymore for her. They said due to her short term memory loss and low concentration levels this is how she will be for the rest of her life.
She cannot sit up, is bed bound and has to be hoisted into her wheelchai

As a neuro physio I would not want to give you an exercise programme over the internet without having assessed your mother. The physio giving the exercise needs to know your mothers status and current abilities. I think you need to seek help from the NHS to help you with this. It is a perfectly reasonable request - you are really just asking for things you and your mother can do to help her as much as you can.

Here are some general things to think about before seeking further help:

• what about muscle contracture? has she been given exs to and positioning to try to prevent further contracture? Even if she doesn't get any better contractures can get worse over time and result in increasing disablement and ill health. So doing things to prevent cotractures is a good idea.
• Did they try a tilt table standing frame? - even if your mum doesn't have the motor ability to stand up or to maintain standing udner her own steam a standing frame provides a way of maintaining standing and may help in preventing further contracture to the leg muscles, and may help with bladder and bone health. They can also help with morale - providing the process is relatively comfortable. In order to use a standing frame you have to have enough range of movement at the knee and hips to get them relatively straight. If she is able to benefit from one you could look into getting one. I am not sure what is involved in your country. And you would need considerable help from a physio with the first few uses of it. However if your mother would benefit from it you can soon learn how to set your mother up in it and it couled be part of her daily routine.
  
  Are standing frames effective? - there is not much evidence that they do work but this may be more due to an absence of evidence rather than evidence of absence. There aren't many trials that looked at the use of tilt tables or standing frames
  
• Not spending too much time lying in bed . You have to be careful with developing pressure areas if you spend too much time in the chair and if your mother has big fatigue problems you have to work within what is possible. However the less waking time spent in bed the better. Being upright promotes better attention and consciousness.

[sadiepup]

Thanks for your reply.

I didn't even know what contracture was. Before they left, they gave us a list of exercises to do with my mum but they called it maintenance. They never mentioned contracture.

She was in a tilt table once in the hospital but it was never used again and they switched to a rota stand instead.

As far as the NHS is concerned they said they cannot do anymore for her.

If we want her weight bearing at least, then its upto me and my family at the moment.

Obviously not being a qualified physio, I was hoping to get some exercises for her sitting balance. Is there any websites that would give this information?

[gcoe]

Hi sadiepup

sorry to be negative about the prescribing exs over the net but I hope you can understand that it is more from the point of you as wanting your mother to get something that is both effective, tailored to her needs and safe. I can't think any websites or audio-visual things off hand. but I will have a look around.

It seems to me it is a bit mean providing absolutely nothing in terms of maintenance, particularly as she is less than a year since the haemorrhage. In our system people can get physical assistance including help with an exercise programmes in the home on the justification that it keeps people out of nursing homes and therefore saves the govt. money. Perhaps there is nothing like that in the UK?

I wonder if your stroke foundation or brain injury consumer group can offer anything? Here these groups often provide support and some sort of activity programme. It seems to me you need someone to advocate for you and your mother.

Do any UK physios who know the system have any ideas here?

[gcoe]

Oh by the way contracture just means the muscle gets shortened and tight. When one is paralysed or very weak the muscles aren't put through their normal extensibility so they can become abnormally shortened. Sometimes there is also abnormal uncontrolled muscle tension in the muscles generated by the nervous system and this compounds the muscle contracture. It is worthwhile doing what one can to keep the muscles supple as possible as this can cause more problems as time goes on. Positioning and exercise can help with this.