arm ataxia from TBI - advice for non-expert

[littlerachet]

Hi,
My partner has Ataxia in his right arm after a severe TBI 3 years ago. It has got worse within this time. I would like to know everything I can do to relieve this for him, so he can at least eat without needing someone to hold the spoon, or drink without dropping it everywhere and someone holding the cup. He is on an extra soft diet, hopefully moving to soft soon. His swallowing is improving but arm getting worse.
I am prepared to do what ever it takes and he has a good team of carers, so he is lucky. I know a reasonable amount about the body as I train and have researched a lot but I am no expert and am not a physio, so could really do with some expert advice from you guys!! (explained in terms I can understand if poss).
Hi slimits are - he is wheelchair bound, but does standing practise in a frame with lots of support. He can go prone but this is difficult due to v.stiff left arm as the left side is v.weak. He also has cognitive difficulties so needs facilitation.

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[Fyzzio]

Hi,
it is interesting that you use the expression ataxia (who diagnosed your partner?). Ataxia normally refers to a lack of co-ordination of muscle movements. Not commonly observed after a TBI, but possible, e.g after a cereballar event.
Your partner might suffer from unco-ordinated arm movements due to other symptoms, such as muscle weakness, combined with an increase in tone or spasticity.
It is really difficult to give specific advise over the distance, never having seen your partner move or feel the arm. So, I would recommend for you to consult a local, community-based Physiotherapist with experience in TBI or spinal injuries. She/he will be able to do an assessment and suggest therapeutic input and a home-based exercise programme. Sometimes, Botolinum Toxin-A injections, combined with intensive rehab programme (OT, PT, carer supported home programme)are also beneficial to give your partner a short window of opportunity to improve his arm functions to the max.

Hope this helps a little,
kind regards,
Fyzzio

[littlerachet]

Thanks Fyzzio, you make some good points.
My partner was in a specialist neuro rehabilitation unit and they diagosed ataxia, though weirdly that is his good side. He doesn't have spasticity in that side and not much high tone either. I have always been a bit dubious about this. He had a defuse brain injury from an RTA, so it is possible many parts of his brain were damaged.
He didn't have any shaking to begin with but it's there now from the moment he wakes up if he tries to move it. He's fine when the hand is still though.
Regarding getting a proper diagnosis - we don't have any physio support from the hospital and there is a physio as part of the community team who comes max once a week, though we haven't seen her for two weeks and honestly, getting her to look at the things we want to work on is difficult to say the least. It took her three months to organise a risk assessment to go to the gym and we still have no feedback. All the while I am thinking he just really needs to get into the gym and build himself back up.
If you have any suggestions it would be really really appreciated as at the moment we are struggling.

[Fyzzio]

Hi;
Yes, TBIs can present with all sorts of symptoms, since the injury is often diffuse and a nice "bang" to the head causes acceleration and deceleration damage. However, if the ataxia is a fairly recent problem (actually, how long after the accident was he diagnosed?) and is getting worse, this might need specialist, i.e. Neurologist assessment. It could be caused by a degenerative process - now this is going to make you really happy isn't it ...

TBI Rehab is a specialist area within Physio and not many of us have received additional training to provide the adequate treatment/ education. If your Physio support is unsatisfactory, would you be able to contact the Specialist Rehab Centre and ask for alternative support/ suggestions? Or are they able to review your partner and set up a plan for him?

Generally, ataxia is rather difficult to treat. I am unaware of what current research suggests. Here's my take:
Some patients do well with passive guidance for the desired movements; some work well when the joints are approximated (="pushed"), as in working against resistance or in a situation where e.g. the hand is fixed on a surface, rather then asking the patient to do a "free movement in space". The principle here is also to do task orientated and purposeful movements, i.e. aiming for a specific goal. In my experience, most ataxic patients lack trunk control = you need a firm trunk to be able to control arm movements. So that's worth looking at.

Hope you understand what I am talking about.
Good on you for caring so much,
best of luck,
Fyzzio

[littlerachet]

Thanks Fyzzio,

Some well considered comments, this is really useful stuff thank you so much for taking the time. I think I will try to book an appointment with a neurologist to get an opinion - good idea.
I certainly think what you said about trunk control is true, as James trunk control is very weak. The pushing exercises sound good also. Do you think something like hand cycling with resistance might be beneficial? I can see what you are saying about movements in space. I think this is the problem with eating - it is all movement in space and James really struggles with this.
Also agree we need a specialist but neuro physios are so hard to find and specialist physio is such an important role, well any type of physio is - I wish there were more of you out there!!!
Can I just ask about the degenerative process if I may - James accident was just over three years ago and we did not see any shaking for the first year and for the last year it has got much worse. I thought with TBI it was progressive (as in you get better, however slow it is) not degenerative - is this not the case? or is it not as black and white as that?

[Fyzzio]

Hi,
I haven't got much personal experience with the hand cycler, but it is worth a try. Suggest to give him guidance first, i.e. hold his hand/ elbow in place while he does the cycling. Have you ever tried 4pt kneeling, so getting him on hands and knees - could try to sit back on feet (while you are standing over him and hold pelvis/ carer could hold hand in place if neccessary) and slowly shift weight forwards onto hands?
I don't want to go to deep into the possibilities of having a degenerative disease. That's completely hypothetical. Not seen as a consequence of the TBI, but rather a new/ different event. Don't go there, I'm nearly sorry to mention it ...

Cheers,
Fyzzio