Tip & Hints for Equipment The hints and tips in this booklet have been submitted by people living with MND and are not as such endorsed by the MND Association. We would always recommend you consult a relevant Health Professional before trying any pieces of equipment or medications/treatments. -1 0
Disclaimer All of the ideas that worked for individuals and that are contained in this booklet, are not endorsed by the Motor Neurone Disease Association or other professionals and if people are considering adaptation of equipment that contact with the relevant HSCP would be most advisable as any changes may unintentionally have an adverse effect on the user and render warranties null and void Foreword Contents: Page Disclaimer 1 Foreword 1 Contents 2 Head Support 3 Finger Supports Suction Machine Foam Bed Extensions Aid to pressing Mouse mat for wheelchair Cameras Screen support Mirrors Stair climbing wheelchair This booklet has been compiled as a helpful guide for things people living with MND, or their carers, have found made life easier is one way or another. They cannot be endorsed by the MND Association, but they have been compiled to offer tips that may help with issues that don t seem to have a standard piece of equipment suitable, to those currently living with MND. Some standard items of equipment are included as sometimes not all variants are available and seeing other varieties will sometimes trigger a way to adapt an existing piece of equipment. Clearly not all carers can adapt or make items of equipment and one voluntary organisation that does help in this area is REMAP, engineers who will design & build bespoke items of equipment. 1 2
Head Support This is one area where there is definitely not any one standard solution that works for even the majority of people. Standard equipment Soft Collars One person found them ideal for travelling in wheelchairs and in wheelchair accessible vehicles (WAV), but too warm for general use. Pressure Marks Often pressure marks can occur with support collars and there is a material used to treat surgery scars that is smooth and allows sliding, will adhere to the skin and was found to help in reducing the effect because it allowed sliding rather than the chin to be in one place. However it was found that it had to be a reasonably large piece to adhere over a reasonable time otherwise it would come off. Bespoke supports Oxford Support Aspen Vista Oxford Lees Head Support In bed: the problem with hospital beds is that they have different forms of construction for the sections that move, depending on the manufacturer. This means that the way the following support attaches will vary depending on the bed. It was made in wood for speed of construction, but an aluminium design was drawn with adjustment (the builder was an engineer) so it could have been made more elegant, but other matters were more important than aesthetics, so the aluminium was never constructed. The band around the head was a material used by?orthopaedic Therapists? to make slings, etc. as it would attach easily with Velcro to allow the head position to be adjusted. The thing to be VERY careful about, is to avoid pressure sores, and this was done successfully by moving the band reasonably frequently, varying the head angle and using a variety of band widths. 3 4
The following are a couple of examples of supports for use in shower chairs, glideabouts, etc. The first is one where the tubes slide into the top tubes of the chair and the piece of wood goes between them and the head support is a piece of soft cloth. The ingenious bit of this support is the adjustment for the head, being done, not by tying the cloth at the correct length, but by having a piece of foam cut as a rectangular cube with three different lengths and inserted behind the board. Using a variety of sized cubes give a tremendous range of adjustment so the best position can be found. The second used clamp blocks to hold the extra frame above the chair so that a cycle helmet could be used to support the head hooked back to the rail. The cycle helmet had a soft material around the forehead, but it was found that some additional padding in that area was helpful to stop pressure marking. 5 6
Finger Supports Someone needed to stop the fingers curling as they were painful when curved, but standard finger splints were not suitable. Corrugated cardboard was used with selotape to make individual finger splints that could be tailored to the fingers and simply made (this example was made from a Pizza box, so sounds like a ready source of material!). Alternative hook positions for strap to vary position of load on forehead & head angle A different example that was used by someone recovering from several broken fingers provided by the hospital OT was this using a mouldable plastic (mouldable in hot water) to get the correct form. Suction machine Cleaning the tube Someone needed to clean the suction tube used to extract saliva and the carer was regularly filling a cup of water. A giant rabbit/hamster water feeder reduced the filling to the same frequency as emptying the suction machine jar. The trick with this was to drill a couple of small holes either side of the bottle to allow the air to go in as the level fell in the dish (try your prototype over the sink, not in the bedroom!) Varying pressure The suction machines used had a variable suction available, but it was in discrete steps. It became necessary to have a finer control as the machine became a constant use device. This adaptation utilised pieces from a garden watering system to add a 7 8
dripper that added a variable bleed of air to the suction tube and allowed the amount of suction to be varied in the mouth tube between the coarser steps on the control switch. Bed extensions These were made for a bed where the standard extensions went in the centre and so increased the distance between the backrest and the knee break. These were in the correct relationship but the feet were pressing on the bottom foot board, so these extensions were made using the same principle of securing and 4mm plate steel (a block of foam was used to prevent the mattress sliding down the bed as the heels did not rest on the foam so pressure control was not an issue, but care needs to be taken in this area). Foam This is a wonderful material to make all sorts of support wedges and pillows/cushions, but it can be used for other things. If you can find the local supplier they can cut it to a variety of shapes, including rings. These were used to increase the diameter of pens and other items to make them easier to grip Aid to pressing This contraption was also done in a hurry when it proved impossible to push the bell push button to call the carer. The left hand bolt is the hinge and is arranged for the top metal lever to move slightly between the top nut and the one hidden underneath. The centre bolt is just there as a guide and to stop the lever being lifted out of position, and the right hand bolt is arranged to just sit on the bell push. The bell push is held in place with double-sided tape. A slight pressure on the end of the top lever had the carer bounding in to the random tune played by the bell. 9 10
Wheelchair adaptations Mouse mat for wheel chair Before a Samsung Q1 touch screen computer was obtained to run the Grid, it was being run on a laptop. In the wheel chair, it was not possible to use the mouse and pressing the keys proved too difficult. The mouse mat was bolted to the opposite arm of the chair to the controls and enabled the mouse to be used to operate the Grid speech programme. Equipment shelf Many wheelchairs have these either fitted, or as options. Often electric recliner chairs do not have shelves, for a very good reason, that there is a real danger of tipping backwards on any ramp or steep slope. However, the alternative to not having a shelf to some people with MND is not to go out; so the compromise is to have the shelf and have the carer behind the chair for any manoeuvre near any uphill slope or ramp, and even to carry the equipment up steep slope & ramps (particularly into WAVs) and replace it at the top. This was used for NIV & Suction machine. Cameras Often the means of operating the door entry system is an intercom and then an electrical release. If it is though a good idea to see the person, then it is possible to get wireless cameras and a small screen so that the person asking for entry can be seen. There are several about, but the one used had four camera positions so one used to look at the doorstep, one the front path, one the road outside and the other the garden (but that was to watch the birds). 11 12
Screen supports Where the computer running any programme is not needed and only a screen is required, then a monitor can be positioned using one of many proprietary cantilever monitor supports. Mirrors They are useful to look behind or sideways when mobility is difficult. There are simple tile mirrors available, some others predrilled, so they can be mounted in strategic positions to aid visibility. They can be used in a bedroom to view the garden, for example. One way of easy adjustment is to use the ball camera mount from a monopod which allows great adjustability. The use of a hinge and a spring (rubber bands make good springs for a limited period of time and there are often plenty on the pavement) allow a mirror to be suspended from the top of a piece of furniture. Step Climbing wheelchair You need access to a workshop or some friend(s) with a workshop, but it is possible to adapt a small wheel wheelchair (probable possible to do a large wheel wheelchair, but it is likely to be heavier). A sack truck designed for climbing stairs was used as the donor of the wheelsets. The centre of rotation was different from that of the chair so it was necessary to make up mounting plates to locate off the original wheel mounting and drop the new rotation centre lower. As with all these projects speed was of the essence and the adaptation was made in steel. Should it be built again, then some aluminium would be used in the design to reduce the weight. Tubes were attached to the plates to take an extension handle so the upper operator does not have to bend his back and risk straining it. arrival in the house NB: it will not work with open riser stairs. The flight of stairs and the successful Rubber Band spring on left mirror. Monopod ball joint on right hand mirror shown inset Stair climbing wheelchair with part of the 13 donor sack truck, showing 14 wheels, mounting plates, and location for extension handles.
Below: the extension handle in use. Communication aids The electronic aids, such as the Lightwriter or the Grid are not covered here. These are for the times when electronic aids are not suitable, or they are becoming difficult to use. This is an example where the communication was by blinking using the alphabet on the page as a grid so the first series of blinks for the row and the second for the column. The alphabet is arranged with some of the most commonly used letters requiring the least number of blinks. 15 16