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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
EPDA - European Parkinsons Disease Association
PARKINSON'S DECISION AID
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Living a full life with Parkinson's

Many people with Parkinson’s say that their quality of life becomes affected.  Of course, this is a very personal thing and only the individual concerned is able to form a judgement about how his or her quality of life has altered.

Parkinson’s can affect the way you carry out a broad range of everyday activities, from working and driving, to simply eating and brushing your teeth. But by making some small changes in your lifestyle and also in your approach to activities, you can maintain independence and continue many of your usual routines. It is possible to maintain a good quality of life, simply by embracing change.  

There is no doubt that a positive outlook, along with determination to overcome obstacles and focus on what you cando, will help you in adapting to life with Parkinson’s and, given time and an optimistic attitude, you will be able to continue to pursue the activities and relationships that make your life enjoyable and meaningful.

 

Emotional, psychological and intellectual wellbeing

Emotional, psychological and intellectual wellbeing should be taken care of, as well as physical symptoms

Looking after yourself

We all need to look after ourselves, but for those with Parkinson’s it is particularly important to take care and prevent symptoms from getting worse.  There are many simple ways in which you can enhance your general wellbeing such as:

  • Spirituality: There is increasing recognition that good spiritual health enhances general wellbeing.  Following a spiritual path can help give a sense of hope for the future; it may also help in adapting to life with Parkinson’s.  The range of activities on this subject is wide. For more information see Spirituality on the Rewrite Tomorrow website.
  • Complementary therapies: Complementary therapies tend to take a holistic approach and treat the patient as a whole rather than just addressing the symptoms.  This approach is particularly appealing for people with long-term conditions such as Parkinson’s, where as yet there is no cure.  Although doctors are now much more open to the idea of complementary medicine some still have reservations, as few of these therapies have undergone rigorous scientific research or are regulated through government legislation. For information on a wide range of therapies and their potential benefits see Complementary Therapies on Rewrite Tomorrow.
  • Managing stress: Physical or emotional stress can make it hard for our body to cope with illness or disease, so it’s not surprising that it can worsen Parkinson’s symptoms, particularly tremor. Living with Parkinson’s can cause additional worry and frustration, so learning to manage stress and being able to relax is important for maintaining a good quality of life.
  • Healthy eating: Following a balanced diet will enhance vitality and help ensure that your medications are as effective as possible.  For more on this, as well as tips on preparing food, and eating and swallowing see Diet & nutrition.
  • Looking after your teeth: Keeping teeth and gums healthy can be more challenging for those with Parkinson's, due to the nature of its symptoms and some of the medications used to treat it.  There are practical steps you can take to improve your oral health, as well as many professionals who can offer advice.  For more on this see Teeth & oral health.
  • Looking after your feet: Our feet work incredibly hard so it’s important to look after them. Any foot problems left untreated may become painful, reduce mobility and may make falls more likely.  Those with Parkinson’s may be particularly susceptible to certain foot problems and may also find it harder to care for their feet.  For information on potential foot problems and ways to treat them, as well as practical advice for looking after your feet, see Podiatry (footcare).
  • Exercise: Well chosen exercise that is appropriate to your abilities is especially important as muscles and joints tend to become stiff and weaken more quickly with Parkinson’s.  Regular exercise seems to have a positive effect on the progression of the illness, reducing or delaying symptoms such as tremor and rigidity, and making everyday activities such as turning in bed, getting up from chairs or dressing easier.  It can also have psychological benefits and can help overcome difficulties you may be experiencing and may give you a sense of control over the illness.  It won’t take Parkinson’s away but it can make you feel better about it and, combined with a good medication regime, can enhance your quality of life and help to maintain your independence.
  • Relationships with family and friends: Living with Parkinson’s will also affect your family and friends and it will take time for you all to adjust to the illness being part of your lives. How much you want to involve those close to you in the early stages is a very personal decision however, it is important to remember that you would have had Parkinson’s for some time, things won’t have suddenly changed overnight. For ideas on how to talk to family and friends and maintain strong relationships see Family on Rewrite Tomorrow..
  • Communicating with others: Parkinson’s can cause communication difficulties, for example with writing, speech, facial and body expressions.  There are various trained professionals who can help you to overcome these difficulties and specialist equipment may also help you to communicate more effectively. See Communication & Parkinson's for more ideas.  Support groups are a great way to boost your social activities and, communicating and sharing experiences, especially with those in a similar position, will be a huge help.  For more on this see [rewrite support groups].
  • Sex, sexuality and intimacy: Parkinson’s can bring with it physical and emotional changes that may challenge the sexual and intimate side of relationships and this may result in a less active and enjoyable sex life.  There are professionals who can help you overcome such difficulties and offer lots of help and advice.  For more on this see Sex, sensuality & intimacy.
  • Women’s issues: Women with Parkinson’s need to take into consideration a number of aspects, in particular intimacy and sexuality, pregnancy and breast-feeding, and menstruation and menopause.  Being diagnosed with Parkinson’s can make anyone feel differently about themselves and perhaps less comfortable with intimacy. This may upset the balance and harmony in a relationship, which can in turn affect both of you.  Menstruation and menopause, and pregnancy and breast-feeding may also present additional challenges.  Understanding the potential difficulties and ways to overcome them can really help to minimise the impact they may have on daily life.  It is important to talk openly about any difficulties or worries you have so that they can be treated quickly and effectively.  For more information see Women & Parkinson's.
  • Looking after your financial and legal affairs, and knowing your entitlements: Having Parkinson’s may affect you financially for a number of reasons, if, for example you have to stop working or need additional care.  It is important to plan for your future sooner rather than later in order to compensate for any financial hardships.  You may be legally entitled to certain benefits, so speak to your healthcare professionals, local benefit offices or others in the same situation as you for tips and advice.
  • Continuing with work: How Parkinson’s affects your work and how you deal with telling your employer is a very individual decision.  There are many practical steps you can take to make it easier for you to keep working, but if you do decide to retire it is important to be sure that this is the right decision for you. 
  • Helpful hints about the home: There are many tips and tricks you can put into place around your home that will help you in your everyday life. Simply adjusting the layout of your kitchen can make food preparation much safer and easier, or perhaps changing the type of sole you have on your shoe will help to prevent falls.  To see a wide range of suggestions to help with activities from dressing to driving, and movement to memory see Daily living - helpful hints.
  • Hobbies and creativity: Keeping your interests and hobbies going and developing new ones is an important factor in maintaining a good quality of life.  Activities which take you out of the house and involve people can be particularly beneficial in providing mental and social stimulation.  Sometimes you may need to adapt to any limitations you experience, for example taking a shorter walk than usual, but do try to strike a good balance of keeping yourself going and accepting that some changes need to be made.
    Many people turn to new pursuits with great success, for example creative activities such as painting, sculpting, drawing, playing an instrument, singing, dancing and writing.  Developing new interests can be very therapeutic and satisfying and some find that when they are absorbed in their hobbies, symptoms tend to lessen and they relax more.  As individuals we all respond to different stimuli so you may like to try a variety of activities and see what you most enjoy and find therapeutic.   Don’t be put off by thinking that your symptoms might make some aspects more difficult, for example holding a paint brush, as there are often are specially adapted tools available or an occupational therapist can help with strategies.
    See also Creative therapies.
  • Travel and relocating abroad: Travel can present a few difficulties for people with Parkinson’s, such as getting the timing of your medications right, especially if you are abroad and in a different time zone. But, with a little planning most of these challenges can be easily overcome.  For tips on travel, transport and accommodation see [rewrite travel]. If you are thinking of relocating abroad, there are many things that will need careful consideration in order to make the move a successful one, such as the location, language and culture, social and health care system and financial aspects. For more on this see Relocating abroad.
  • Using the Internet to your advantage: The Internet is an invaluable tool and is brilliant for finding information on Parkinson’s. Search engines such as “Google” make it possible to target particular topics of interest within seconds, 24 hours every day of the year. However, it needs to be used with some discretion, as not everything posted on the Internet can be trusted and you need to be vigilant. By following a few simple rules you can certainly benefit from the wealth of information available to you.  If you have difficulty using a computer then there are various aids which can help so don’t be put off.  The Internet can also be a useful tool for doing things that might otherwise take more time, for example booking holidays, or making purchases online.