The following are Liz’s observations of symptoms, obtained by talking to group members since 1998. There appear to be four main core symptoms:
They present during everyday and routine activities, including:
Climbing Stairs: Walking upstairs (with a hand rail) may not pose much of a problem, but walking down — even with a hand rail — can at times be virtually impossible. The same problem is evident when walking down a slope. The reason for this is that even though the same muscles are in use, they work differently when used for different activities.
Crossing Roads: This is provoked by unexpected and inexplicable distress. For example, at a pedestrian crossing, when a car stops the sufferer seizes up, even though he/she knows it is safe. It causes rigidity and/or spasms, leaving the sufferer feeling unreasonably stupid and embarrassed. The cause of this bizarre reaction is probably twofold: Firstly, as strange as it may sound to non sufferers, the sufferer has a desperate need to be in control, but because the car has stopped, the driver has control. In effect, this tells the sufferer they must cross the road, self-control is lost and the symptoms kick in.
Falling: This is distressingly common among sufferers. Non sufferers use their muscles to compensate when they trip over a bump, however small. For SPS sufferers such apparently little things are a potential nightmare. Evidence shows it can be something as seemingly trivial as a piece of Lego left on the floor that can trigger a fall. When encountering the slightest of hazards, the body simply does not respond as it should. It invariably goes ridged and is followed by a fall. If help is needed to get up, the control element (see crossing roads) kicks in. Anyone helping can’t do the obvious — help the sufferer get up — as this exacerbates the problem. The helper must let the sufferer take the lead, ie the sufferer probably has to tell the helper when they are ready to be helped. In effect, most sufferers find it easier to hold on to the helper and pull themselves up rather than be helped up.
Weather: Wind, frost, snow and ice are major hazards for any sufferer. Wind can blow them over; frost, snow or ice are impossible to walk on because of the fear of falling. In fact, any shiny surface causes anxiety. Even if it is not actually slippery, the brain perceives it to be a sheet of ice and therefore it cannot be traversed.
Anxiety: Sufferers normally cope in much the same way as anyone else in genuinely anxious situations. However, trivial events that non-sufferers take in their stride generate serious anxiety in sufferers. For example, an activity one undertakes time after time can suddenly, and for no apparent reason, cause extreme anxiety that inevitably will be followed by rigidity and or spasms. Because of this, many sufferers find themselves housebound because of the embarrassment and/or fear of an anxiety attack happening where others can see them. It’s worth noting here that the function of GAD is to convert glutamate to gamma-aminobutyric acid (GABA). GABA serves as a natural anti-anxiety compound. As a significant number of SPS sufferers have antibodies to GAD, not surprisingly they also have anxiety. Tragically, anxiety exacerbates both rigidity and spasms.
Startle Response: Sights, sounds and touch — any or all, no matter how seemingly insignificant, can provoke one or all of the symptoms of rigidity, spasms or anxiety.
Sight: Even something as ‘normal’ as having one’s photograph taken is only one of many instances where the sufferer, even when they know what is about to happen, can still generate an adverse reaction. Anything in a sufferer's peripheral vision can cause problems. For example, walking into a room where balloons are on the floor. This can suddenly become a fear totally disproportionate to the reality. Balloons move as one walks past them, causing anxiety and of course the fear of one popping.
Sounds: A knock at the door, the toaster popping up, any unexpected sound — loud or quiet — can and does trigger a reaction.
Touch: Most people ‘jump’ if they are tapped unexpectedly on the shoulder, but that would be the full extent of the reaction. For SPS sufferers the slightest ‘touch’ can trigger a spasm. For example, accidentally brushing a hand against something, knocking over an object — the list of examples of the startle response is endless. Not all sufferers experience the same degree of anxiety, spasms or rigidity; some are affected to a much higher degree and completely disproportionate to the trigger.
Mobility: Bathing can be an arduous task, as the rigidity often prevents the sufferer getting in and out of the bath without help – if indeed they can even get a bath. A walk-in shower, with a seat and grab rails is often an easier solution. In the home, many ambulant sufferers can get around reasonably well because they are in familiar surroundings; it’s their comfort zone with familiar things to hold on to, whether furniture, door handles, grab rails, etc. In the garden, more help may be needed, perhaps a three-wheeled walker or someone’s supporting arm for both physical and emotional support. Beyond the home, it is a completely different scenario — the great outdoors is an area as far out of the comfort zone as one can get and the world is a very threatening place.
Agoraphobia: There seems to be some respite for sufferers who are not in wheelchairs but who use a walking aid to walk close to a wall or hedge. Anxiety is evident when there is a gap to cross. For example, if you were to take a sufferer who is able to walk with a stick, crutches or a walker and ask them to walk down a narrow corridor, they could possibly do it unaided because of the ‘safety’ of the surrounding walls. Ask that same person to take one step, or in some cases just stand, in the open unaided, and they would — if they could — sit down slowly, or they would simply fall over. The floor, it seems, is safe, because there is nowhere else to fall
Bladder Control: There are a number of sufferers — mainly women — who have problems with bladder control. Some require catheterisation. Although this appears to commonly affect women more than men, perhaps men are a little shy of revealing such a problem? Some also find bowel movements bring on spasms. In these cases, enemas are administered on a regular basis to alleviate the problem.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
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The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.