Throughout the various Parkinson's stages, there are many sources of support available and things you can try in order to help you manage the symptoms and slow their progression.
How will my family and friends be affected?
Parkinson’s affects more than one person. It reaches beyond to family and friends and affects their daily lives and the relationships you have too, for example you may need more help with daily activities, and your roles and responsibilities may evolve.
Children’s reactions to Parkinson’s vary widely depending on their age and the relationship they have with the person who has been diagnosed. It can often be helpful for you and your children to speak with other families who have had similar experiences, so ask your national Parkinson’s organisation or Other Parkinson's organisation if they can put you in contact with others, or you could contact a national counselling organisation who can listen to any worries and help you work through them. You may also find it helpful to take your partner or close family with you for your next doctor’s appointment so that they can ask any questions they wish.
The many sources of information available can also be helpful for families. Keeping informed about Parkinson’s can help them to adjust to the changes that will not only affect you but your family as a whole.
There’s lots of information both published and on the internet which is aimed specifically at family and carers.
Will I still be able to look after my children?
It's important to remember that you will have had Parkinson’s for some time before the moment of diagnosis, and your ability to look after your children will not suddenly change overnight once you are diagnosed. But over time you may find that roles and responsibilities within the family change as you all adapt to your needs and symptoms. Good communication with those close to you and planning ahead can make these changes much easier.
If you feel that your children are not coping well, discuss your concerns with your doctor who may suggest that a trained therapist or counsellor might be helpful to you personally, or to the family as a whole.
See also Relationships & communication.
Where can I get help and support if I need it?
Being well informed about Parkinson’s and having the support of others is key to coping well. As well as the multidisciplinary tea (MDT) who will be supporting you in treating and managing your Parkinson’s on an ongoing basis, the Parkinson’s association in your country will also be able to provide further information and support. They may also be able to put you in touch with people who have Parkinson’s in your area who you can share experiences and advice with.
Your doctor or other healthcare professionals should also be able to provide information and contacts for other support groups; you can also look on the Internet, visit your local library and check out local newspapers or other publications that may have details of further support.
See also Therapies & multidisciplinary care.
Where can I get more information and share other people’s experiences?
Your doctor or other healthcare professionals may be able to put you in touch with others who have Parkinson’s in your area and who would be happy to share their experiences with you. Your local library, newspapers or other publications may also have contact details of support groups or you can try the internet using a search engine such as ‘Google’.
Can I use complementary or alternative treatments instead of conventional medicines?
Complementary therapies are non-conventional health treatments, often based on ancient systems that people use alongside standard western medicine. The range of such therapies is wide, with the majority taking a holistic approach (treating the patient as a whole, rather than just addressing the symptoms).
It’s important to note that attitudes towards complementary therapies, levels of use, and which types are most popular, vary from country to country.
In general, doctors are more open to the idea of complementary medicine than they used to be, especially if it is ‘integrated’ (used alongside conventional treatments).
Few of the therapies used have undergone rigorous scientific research and even less are regulated through government legislation.
Many doctors still have reservations and do not recommend that you use such therapies instead of conventional medicine. If you are thinking about embarking on a course of complementary or alternative therapies it’s important that you discuss with your doctor first before beginning the therapy.
See also Complementary therapies.
Can I protect my brain against further cell damage?
There are a number of lifestyle factors and nutritional products that appear to be neuroprotective, which means that they protect neurons from degeneration. These include coffee, cigarette smoking (within sensible limits and with the obvious health risks and warnings), green tea, tomatoes, ginseng, turmeric and consumption of non-steroidal anti-inflammatory drugs.
Further studies need to be conducted to establish the extent of any correlation between consumption of these agents and the incidence of Parkinson’s, and this is an area of considerable interest.
See also Neuroprotection.
Does mental exercise such as sudoko and reading help?
Parkinson’s does sometimes affect mental abilities, for some the affects are extremely mild whilst other people notice more severe difficulties. However it does seem from research and anecdotal evidence that keeping mentally active and stimulated can be helpful in preventing any decline in mental faculties, so doing sudoku, crosswords and reading can not only be enjoyable but can also help maintain brain function.
See also Mild memory and cognitive problems.
Can I take part in a clinical trial?
Research is a key aspect of Parkinson’s and there are many research projects and trials in various countries. But before considering taking part in one always discuss with your doctor and seek his advice as to whether or not your participation may have an impact on your current treatment plan.
The EPDA website contains the contact details for Our members and Other Parkinson's organisations who may be able to provide further details so that you will have as much information as possible with you when you discuss with your doctor.
See also Clinical trials.