help for client with MND with poor control of neck muscles
(posted by Susan Iwanek)
Philip Watts of the West Midlands panel has asked for advice/assistance on a current case. His client is a lady suffering from Motor Neurone Disease who is losing control of her neck muscles. The family have a wheelchair accessible vehicle, but there is a concern about using it because the client’s head requires support. The local NHS Wheelchair Service have not come up with a solution and the panel have been asked to assist. They note that there are obvious safety issues and would welcome advice from any of the other panels if they have tackled this problem before.
If you have any thoughts on this subject, please post them below and/or let Philip know by email. His email address is philip_watts@hotmail.com.
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Hi Philip,
We have used the Hensinger neck support, as Margaret suggested, with some good results. I have 1 particular client who has now gained significant independant mobility, using this.
Hi
I wonder if the Hensinger head support has been considered?http://www.google.co.uk/url?q=http://trulife.com/all-products/orthotics/cervical/soft-collar/hensinger-head-support&sa=U&ei=UOHMUI6aLebH0QXPq4GwDg&ved=0CB4QFjAA&usg=AFQjCNGiGZnI4sddFRZ9PZh-FAGiUVyUDQ. I have used this successfully with a numberof children but the largest size does go up to adults. I would advise discussion with local therapists however as there will be a narrow ‘window’ of providing sufficicent support without constricting airways particulary with this client group. As an Occupationaal Therpist, I have enlisted the services of the local orthotics service in this type of situation to make a bespoke item.
Philip,
another approach is via F1. Here the drivers need is to prevent violent head movement but at the same time no loss of degrees of freedom.
John
I’m currently working on a similar problem for a client of the Milton Keynes panel, although the problem is significantly simpler because the requirement is for a table mounted arrangement rather than something to go in a vehicle.
Our client similarly suffers from MND, has to lean forwards to breath easily and has weak neck muscles. The agreed solution is an adjustable padded ‘U’ shaped rest for his chin which mounts on an arm fitted to his over-chair table. I hope to deliver the finished article early next week. Maybe something similar but mounted on an arm which could pivot out of the way in the event of an accident etc?
If this is of any relevance to your case I’ll happily send over photos etc.
Have they thought of trying a Burnett body support. You can get the rep out to demonstrate them and see if it will do what you want. Try rfbindustries.co.uk they should be able to give you your local rep.
I assume that that the neck vertebrae are intact and that the problem is purely muscle weakness. if that is the case, then I suggest a vertical post behind the back of the wheelchair seat, to which is fixed a half ring of plastic moulded comfortably to the sides of the head. A padded fabric strap is attached to one side, which passes across the forehead and is fastened on the other side. This will prevent the head drooping forwards.
Don’t do anything here, Philip, without medical input. There are commercial products (google Canadian Collar, Pliladelphia Collar) but reception varies – some users find they are good, others think they are a waste of money, so work with an OT or PT on this.
Look at the possibility of a collar / neck brace which sits on the client’s shoulders, not attached to the wheelchair.
Watch this blog; I posted a similar enquiry recently and received a huge response, which in itself was a tremendous encouragement to the carer as well as to the client.
Hi Philip,
Some years ago I was asked to help a motor neurone client with the same neck muscle problem but, in his case, the difficulty was with his eating and drinking. He was bed-bound so I got Social Services to provide his bed with a monkey pole and from that I suspended a helmet (made to fit his head) and provide total support at any inclination of the bed. It worked well.
The same system could be used in a car BUT the essential difference is that any emergency stop or collision could easily result in catastrophic jerking of the head. So, I am inclined to say that it is one of those cases which we should refuse in the best interests of the client.
I will monitor the site as I will be interested in others views.
Phil, have you checked with the various Neurological hospitals. I’m sure the west Midlands unit in Oswestry may have a solution to the problem, if not, ask them to contact the vairous other units in the country who will have done things for people with spinal injuries in weelchairs. Thy do speak to the wheelchair services but there may be a chnce that tis option hasn’t been explored thoroughly. The oter option I would explore is looking through the Naidex list of companies who sell prducts at the national exhibition.