Dealing with paralysis in everyday life
There are few clear rules of human communication other than that it is best when mutual respect is shown between the parties concerned. When one party fails in this the other may need to demand it. Self-assertiveness is a skill that can be acquired, and better through training than from bitter experience.
All public servants have a responsibility to meet the needs of the public including those with disabilities. It is unacceptable that professionals involved in health, welfare, housing or provision of educational or leisure facilities are unaware of these requirements. Similarly, employers have a duty to try to adapt employment conditions for a worker returning with paralysis and to afford job opportunities to those with disability entering the workforce.
Adjustment to sudden disability can in some instances be more difficult for the family than for the paralysed person. Parents, children, brothers and sisters or close friends may exhibit much more dramatic responses and cope less well than the person directly affected. The atmosphere of the home can, therefore, prove a help or hindrance to a person’s adjustment depending upon how other family members react. Professional and voluntary organisations can often help by directing some of their attention to family members to help them understand and adjust to the situation.
Physical barriers to mobility are all too common. Public buildings, shops, theatres, sports facilities and even hospitals continue to be built without adequate thought for the needs for access of people with mobility problems. All too often it is impossible for wheelchair users, or indeed others who can walk but do so slowly or need to use an aid, to use public transport vehicles such as buses, trains and taxis because they simply cannot get into or out of the vehicle.
There has been some improvement in recent years stimulated by the actions of disabled protesters and others to highlight these issues of accessibility. Political pressure on architects, city planners and transport companies may help remove unnecessary obstacles which are in effect barriers to employment, educational or leisure opportunities. The Disability Discrimination Act (1995) outlines measures to be taken to ensure access to commercial businesses, public services and public transport vehicles.
Aids and appliances
There is an ever-increasing range of labour-saving devices for personal and domestic use available to the general public that may prove particularly helpful to a person with paralysis. Similarly, they may find that changing their home or office furniture may prove beneficial. In modern society everyone uses aids of some sort or another for daily tasks whether they have a disability or not, so it’s basically a case of making the best of what’s available.
Occupational therapists and physiotherapists should be able to advise on a wider range of specialised products that may be appropriate. They may also be able to help with finding funding for special equipment. Information from other people with disabilities, voluntary organisations and other sources may also be helpful. There are Disabled Living Centres in many areas and these give demonstrations on how to use various aids and appliances.
Occasionally very specialised equipment, including seating and wheelchairs, are needed to meet an individual’s particular requirements. This may require the advice of other specialists such as bio-engineers, who are skilled in designing technological solutions for people with disabilities. The person’s therapist, hospital doctor or GP are the usual routes of access to these services. An organisation called REMAP provides volunteer experienced engineers who are willing to attempt individual one-off adaptations to help overcome particular difficulties.
Driving and paralysis
Paralysis, except in the case of severe quadriparesis, rarely means that you won’t be able to drive. Many people can and do drive safely and proficiently even with complete paraplegia or hemiplegia. In the case of the latter it is often associated problems such as visual or mental disturbances that can prevent the person from driving. In a number of regions Driving Assessment Centres are available where a person’s capability to drive can be tested and where, if necessary, advice can be given on how to arrange adaptations to their vehicle.
Sexual relations and paralysis
Paralysis can interfere with sexual relationships in a number of ways. The person with weakness may feel less attractive to themselves or their partner; the physical positioning may prove problematical and take more effort. In some instances associated brain damage or the need to take drugs may have an effect on libido. There may also be a problem with ejaculation due to damage to nerves.
Almost all of these difficulties can be overcome in a loving relationship. Sometimes the assistance of a sexual counsellor or other specialist may be necessary. It is important to feel able to discuss these issues without embarrassment and your GP or hospital specialist should be able to direct you to an appropriate expert if they cannot help themselves. Confidential advice can also be obtained directly from an organisation called Sexual Problems of the Disabled (SPOD) and from the National Marriage Guidance Council.
The question of fertility is also an important issue. Not uncommonly in cases of spinal paralysis semen quality is poor, but research is currently underway to try to overcome this problem.
Many of the conditions that cause paralysis, including sudden and severe injuries, cause a woman to stop having her periods, but this is usually temporary. The presence of even quite widespread and severe paralysis does not prevent successful pregnancy. There may be a need for extra antenatal care and occasionally obstetric procedures such as caesarean section are necessary, but many paralysed women have become fulfilled mothers. It is wise for a couple to consider the implications of embarking on the task of child bearing and rearing in advance so that they can make appropriate provisions, just like any other potential parents.
Age and paralysis
While many people are affected by paralysis for the first time when they are elderly, others with long-standing paralysis may discover that the ageing process influences how they cope. With age there is a loss of muscle mass; the skin becomes thinner and more liable to injury; and most of the body’s systems tend to slow down and become less efficient. In addition, many people develop a degree of stiffness of the joints. These changes may bring new symptoms and restrictions for the person coping with paralysis. On the other hand, the changes in social roles and wisdom that come with age may mean that a person finds coping easier.
Apart from old age, the issue of dealing with puberty and adolescence is faced by many people born with paralysis or developing it in infancy or childhood. Cerebral palsy, spina bifida and a range of inherited disorders of the nervous system come into this category. This is the time of life when personalities change and self-image is formulated. There are no clear guidelines on offer here for teenagers, parents or other family members, other than that it is in the nature of the transition from child to adult that all parties have to expect major adjustments.
Finding out about other people’s experiences
Faced with any challenge in life it is usually a good idea to find out about the experiences of others that have dealt with similar situations. In addition to valuable second-hand advice from professionals who have been involved with other people with paralysis, it may be helpful to meet some of these people in person.
Depending upon the cause of paralysis, there will almost always be a voluntary agency concerned with that condition or one addressing a particular disability which has occurred as a result of the paralysis, such as loss of mobility. A short list of such organisations is given at the end of this booklet, but the telephone book and yellow pages lists many others for each local area. Some people find it extremely helpful to exchange experiences and ideas in this way while others prefer not to do so. But in either case public libraries will often contain autobiographies or other accounts of how some people have coped with disease and disability, and these may inspire or at least give some handy pointers.
The Internet allows access to information from professionals, voluntary organisations and individuals on a worldwide basis. It is important to bear in mind, however, that no two people in this world, with or without paralysis, are identical – so avoid too close comparison with others, especially if they are not coping too well. Finally, remember that everyone has the right to live as full a life as possible, irrespective of their personal strengths and weaknesses.
Read More: Brain & Spine Foundation – Dealing with paralysis in everyday life