Early Stages of Huntington's Disease
The early symptoms of HD can be very subtle and it is not always easy to know for sure whether the problem you are worrying about is caused by the illness. For example, what if you were having a stressful time and noticed that your memory did not seem to work as well or that you felt tired more often than usual. The problem is that stress can cause these symptoms and so can HD so it may not be possible to tell which is which. It is also very common to watch for symptoms and this may make you worried that you have symptoms even if you do not.
If you have not already taken a genetic test it is one of the steps you may need to consider if you want to be sure if you have HD or not. But it is important to take things at your own pace and feel ready to deal with hearing that you have symptoms. (See Predictive Testing)
What are the Early Symptoms?
Every person is likely to have different symptoms of HD. Some people with the illness first have problems with motor control. This leads to problems with involuntary movements, which you might notice as jerks or twitches or exaggerated gestures. Sometimes slight changes in balance and coordination occur, which lead to clumsiness or difficulty carrying out tasks that need fine movement control. Some other people with the illness may first experience changes in mood, for example, having sudden changes in mood or being more irritable. Depression and anxiety can also occur.
Many people with early symptoms also say that they have more difficulty concentrating or planning. You may also feel more tired or find it harder to get motivated.
The ways in which this might affect your day-to-day life are varied but can include: finding it harder to concentrate when driving or feeling less motivated in your job. It could also mean that you are less tolerant of people or that you find yourself getting angry with a partner over things that would not normally bother you.
Sometimes you will not notice any changes in yourself while close family members or friends do see changes. This happens for a variety of reasons. Changes can be very small and hard to notice. Sometimes you are not ready to accept that you have symptoms. In some people, HD seems to make them less aware of symptoms. This is normal, but it is important that family members, friends and carers are aware that this is the case rather than assuming that you are refusing to deal with what is happening.
What can I do?
When asking what to do to manage the early symptoms of HD, exercise comes at the top of the list. It is an easy, but effective way of helping yourself. It is well-known that exercise contributes to good mental health as well as good physical health. You may know that regular exercise has been shown to be an effective way of treating depression. It can certainly contribute to a sense of well-being. There is also some evidence from the HD research community that exercise may have an impact on slowing down the motor problems caused by the illness. While no one is sure about this, the other benefits still make it a very worthwhile activity. Regular exercise does not just involve having to go to the gym and can be as simple as going for a regular walk. If you are unsure of what type of exercise to do, your GP can give you advice.
Getting a well balanced diet is another important way of enhancing your health and well-being. What you eat will be different depending on your tastes, preferences and beliefs.
A lot of good advice is available. If you have any concerns about your diet, it might be useful to talk them over with your GP or dietician. Some people with HD find that they lose weight in the later stages of the illness, so it is a good idea to talk things over with your health care provider. Contact the Neuroscience Unit (NSU) or HWA for more information about healthy eating or if you have any concerns about weight loss.
Stress is a normal part of everyday life. Whether you are stuck in a traffic jam or trying to meet a deadline you will experience a degree of stress but usually once whatever is causing the stress can be dealt with, it passes. Some stresses may be long term, for example problems in a relationship or illness. We all react differently to stress but some of the symptoms include: being irritable, fatigued, having difficulty concentrating, feeling low and fretting.
If you have the early symptoms of HD, you may find that you experience stress and strain more easily than you used to and this in turn may lead to you noticing an increase in your symptoms. You can help yourself greatly by learning how to deal with stress. There are many ways to reduce stress which are not just about breathing exercises or relaxation techniques. Spending time on a favourite hobby, listening to music, pottering in the garden, going on a social event with friends, reading or exercising are just a few ways in which you can relieve stress. One key to keeping stress down is to spend some time thinking about the things that you enjoy that have a relaxing effect on you. Try writing out a list of things that you could do to relax. It is also important that you take time to do these activities regularly because this will help prevent stress from building up.
Breathing exercises are a surprisingly good way of controlling stress and they are something that can be done anywhere, no matter what the situation. They involve taking deep breaths in through the nose and then breathing out slowly. Do this several times. Try it just now and notice the difference in how your body feels after several deep breaths in and slow breaths out. It really does have a calming effect.
If you feel that your stress levels are often high and using the ideas described here don't help, it is a good idea to talk it over with your GP.
An important key to relaxation is to do things that are enjoyable.
Keeping a positive attitude
One of the challenges of living with early symptoms of HD is how to keep a positive outlook on life. It can be tough, but staying positive may mean that you feel that you are on top of the challenges you face in life.
As weird as it may sound many people living with HD tell us that they have found positives amongst the many difficulties that the illness brings. What would help you to stay positive? Below we have listed some ideas that may help you to keep a positive attitude.
- Deciding to make the best use of the time when you are relatively well
- Putting life in perspective and worrying less about the "small things"
- Discovering new opportunities and meeting new people.
- Pursuing new interests and perhaps exploring your creative side
- Spending quality time with the people that are important to you.
If you find that staying positive is difficult do not give yourself a hard time about it- it is not a failure. Sometimes the things we face in life can overwhelm us and these are the times when it is important to recognise you need support.
Huntington's WA runs support groups where you can meet others who face the same challenges as you. Individual and family counselling is also available through the Neurosciences Unit.
Depending on what early symptoms you experience and the kind of job you do, you may have to think about how HD will affect your ability to work. Many people with early symptoms successfully continue in their employment for a considerable time. Continuing to work with early symptoms of HD is often necessary for financial reasons. For some people, continuing to work can help them to feel positive about themselves, while for others it is an important way of keeping life as normal as possible.
Some people do need to give up work and there is advice, later in this section, about how to get help if you decide to do this. One decision that you are likely to have to make is whether to tell your employer that you have Huntington's Disease. There are benefits in doing this. A good employer can be very supportive and can assist you in ensuring that you can continue to work for as long as possible. Unfortunately, some employers may not be so supportive and some people with HD have faced the difficult experience of losing their job after telling their employer about their illness. Fortunately employers who act in this way are in the minority.
One important thing to remember is that the law does not say that you have to tell your employer that you have Huntington's Disease. However, if you apply for a job and are asked about your health, you are obliged to tell your employer about your illness. Making an untrue statement about your health could lead to disciplinary action or dismissal if you knowingly give false information to an employer or potential employer. However, it may be unlawful for your employer to dismiss you from your employment in these circumstances and you may have legal avenues to seek reinstatement or compensation. If this happens to you, you should seek legal advice because in certain circumstances your employer may be required to make reasonable alterations to your tasks and/or working environment to facilitate your ongoing employment. However, if you cannot carry out the inherent requirements of your position as a result of your condition, your employer may not be required to continue to employ you.
As well as protection from unlawful dismissal there is legal protection against discrimination for people who are ill or injured. This legal protection is contained in the Disability Discrimination Act at the Federal level and the Equal Opportunity Act at the State level in Western Australia. These laws cover many different things and you can find out more about it from an organisation called the Human Rights and Equal Opportunity Commission or the Equal Opportunity Commission of Western Australia. The Human Rights and Equal Opportunity Commission has a disability rights division which can provide advice and information on your rights in relation to employment and in the provision of services. You can also contact the Equal Opportunity Commission of Western Australia for information. Both organisations provide some very good leaflets and booklets that can help you to know your rights.
Example: You work in an office and part of your job is to take telephone messages, but your concentration and memory are not as good as they used to be. You start to forget some of the messages that you have taken and as a result information does not get to the people it should. In this situation your employer may have a responsibility to find ways to help you to remember the messages that you take. One solution might be to provide you with a Dictaphone so that you can make a record of the message straight after the telephone call.
This is just a small example of how an employer might help you to continue to do your job, but it is possible for much larger changes in your job to be made. Below are some other things that employers can think about if you are having difficulties in your job.
- Changing or reducing the hours that you work;
- Changing your job description;
- Swapping your duties; and
- Providing equipment.
Employers sometimes need support and there are organisations that can do this. If you contact Huntington's WA, they will also be able to give you and your employer advice about the support you need in the workplace. Finally, if you do have to give up work remember that there are many positive alternative ways to use your time. Many people have found volunteering a fulfilling and rewarding activity. There are many opportunities for education, which can range from learning a new skill like cooking to studying something that interests you.
Getting help when you need it
If you have symptoms of HD you may, at some point, feel that you need help with some of the problems that you encounter. It can be difficult to take the first step in asking for help.
It is worth bearing in mind that many of the professional staff that you meet are likely to know little about HD. Most health care professionals will meet none or only one or two people with HD in the course of their career. You can help them to do their job by telling them what you know about HD. It may be worthwhile taking some of the Huntington's WA literature with you when you meet them for the first time. Most professional staff will find this very helpful.
Do not be afraid to spend time telling them what you know about the illness. Even if you do not think you know enough, you may well know more about the disease than anyone else. The chances are that you will still know a lot more than them!
It is often worth taking someone with you for moral support and it is also a good idea to write down a list of questions that you have before any appointment. It is very easy to forget something during your meeting.
It is highly likely you will have contact with several different professional staff. Keeping a journal of your contact with them will help you remember important information about meetings.
(Adapted with thanks from the Scottish Huntington Association)