Does anyone have a problem with head support, if so I have a specialised support that fits to a wheelchair and allows head movement...ideally for collection (in surrey)
details on HEAD SUPPORT – THE LANGDONS SOLUTION
Patients with MSA– Considerations (24/09/18)
My wife Maggie suffered with the need for head support early on in her MSA illness.
The problem was twofold in that she couldn’t hold her head up since her neck muscle spasm was continually pushing her chin into her chest and this caused further difficulties since she had a tracheostomy and needed NIPI ventilation.
It was also vital to support her head since so many other factors were involved, especially communicating and feeding/drinking.
I tried numerous support devices that were based on structures that attached to Maggie’s head and shoulders to hold her head. None of them were successful and indeed caused quite a lot of pain across her shoulders. They were very cumbersome and difficult to fit.
Sadly there is not much information around on this topic and indeed some medical staff were unhappy about mechanisms that held Maggie’s head in place.
Eventually by using extensive searches I found a head strap support system from Sunrise Medical and ordered it through Better Mobility. The system had a dynamic forehead strap that was tightened by two-cord system and had wheels such that Maggie could rotate her head in a limited way
A friend is showing the support in the following photo.
The wheel cord system
SUCCESS
We managed with this system for about two years and had to regularly replace the straps and cords since they wore out very quickly
However it was clear if you didn’t get the strap bedded correctly it could cause pressure on the forehead. This became increasingly common as the MSA progressed and Maggie found it harder to manage.
It was then that I started looking for an alterative. We needed to find a support that better distributed the weight and pressure of Maggie’s head than relying on two cords attached to strap.
I became aware of something called a Savant head support that was in the States and it seemed to meet the goals of supporting Maggie’s head through the distribution of weight into the head support itself.
The Savant Head Support
The photo above show the Savant, its essentially like three long ‘fingers’ attached either side of a central core. These ‘fingers’ are adjustable and can therefore surround and cup the head. The ‘fingers’ are padded for comfort and fit around the patient’s head shape. The top two ‘fingers’ have a strap attachment and lock, so that the head is held in position with a strap across the forehead but this time the stress is distributed into the whole head frame.
The two photos show the Savant head support. The support did not have any rotary function like old system and so we had to find a substitute. We found a rotary interface that could be coupled to the Savant from Symmetric designs in Canada. Not only did they make a 25mm attachment (Axion 9025) to the Savant but also offered a 19mm attachment to our existing Whitmyer support to the wheelchair.
We had our new solution
The Savant was a vast improvement on the old system moreover the Axion moved so easily and smoothly it enabled Maggie’s head to rotate without much stress.
This Photo shows the headrest sliding along the ’C’ shaped rail.
After a few weeks of the new system we found that the Savant forehead strap although made of soft gel was still marking Maggie’s forehead. We found a seat-belt overstrap on the web that fitted perfectly around the old gel strap and was cosy and comfortable.
PROBLEM SOLVED
I produced this document as an aid to other people who may be suffering from similar problems to Maggie. Initially I had the feeling that there were people in the medical profession who disapproved of what we had done; they saw it as a form or restraint rather than seeing and hearing Maggie’s view that the quality of her life has had been positively transformed.
My thanks and acknowledgements go to Beryl Brown at Symmetric Designs in Canada as well as Ian Loughlin at Inclusive Technology in the UK who provided the supply outlet.
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