Parkinson's disease - Living with this medical condition

As we defined in an earlier post, Parkinson's disease (PD) is a long-term degenerative disease in which parts of the brain become progressively damaged over many years. Symptoms of Parkinson's disease include muscle rigidity, tremors (or shaking), and changes in speech and gait. Causes are unknown but genetics, aging, toxins are suspected. We also saw that although there is no cure for Parkinson’s disease, treatments are given to help relieve symptoms.

How will Parkinson's disease affect your life?

Finding out that you have a long-term, progressive disease changes your life. A diagnosis of Parkinson's disease is life changing. We already established that you'll need long-term treatment to control your symptoms, and you may eventually have to adapt the way you do simple everyday tasks.

It is normal to have a wide range of feelings. You may feel angry, afraid, sad, or worried about what lies ahead. It may help to keep a few things in mind:
  • No one can know for sure how your disease will progress. But usually this disease progresses slowly. Some people live for many years with only minor symptoms, such as a tremor in one hand.
  • Many people who have Parkinson's disease can and do keep working for years. As the disease gets worse, you may need to change how you work. You can get support to learn ways to adapt.
  • It is important to take an active role in your health care. Learn all you can about the disease. Find a doctor you trust and can work with. Go to all your appointments, and get all the treatment your doctor suggests.
  • Depression is common in people who have Parkinson’s. If you feel very sad or hopeless, talk to your doctor or see a counsellor. Antidepressant medicines can help.
  • It can make a big difference to know that you are not alone. Ask your doctor about Parkinson’s support groups, or look for online groups or message boards.
  • Parkinson’s affects more than just the person who has it. It also affects your loved ones. Be sure to include them in your decisions. Help them learn about the disease and get the support they need.
Everyone's experience of living with Parkinson's is different, but there are lots of issues and challenges shared by many people living with the condition. Let us look at how to live a quality life with this condition. You may find some of the advice below helpful if you've been diagnosed with Parkinson's disease.

Keeping well

It's important to do what you can to stay physically and mentally healthy if you have Parkinson's disease. These will include the below-listed activities.

1). Exercise and healthy eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood, and relieving stress. There are many activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling, to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

2). Vaccinations

Everyone with a long-term condition is encouraged to get a yearly flu jab. In countries where you have the winter season, this jab is best taken during the autumn which will correspond to the period between September and late November.

The pneumococcal vaccination is also usually recommended, which is a one-off injection that protects against a serious chest infection called pneumococcal pneumonia.

3). Relationships and support

Being diagnosed with a long-term condition like Parkinson's disease can put a strain on you, your family and friends. It can be difficult to talk to people about your condition, even if they're close to you.

Dealing with the deterioration of symptoms, such as increasing difficulty with movement, may make you feel frustrated and depressed. Spouses, partners or carers will inevitably feel anxious or frustrated as well.

Be open about how you feel, and let your family and friends know what they can do to help. Don't feel shy about telling them you need some time to yourself, if that's what you want.

Support

If you have any questions about your condition, your doctor, GP or Parkinson's disease specialist nurse may be able to help. You may also find it helpful to talk to a trained counsellor or psychologist, or someone at a specialist helpline. Your doctor or GP will have details of these, and can let you know about support groups in your local area.

Some people find it helpful to talk to others with Parkinson's disease, either at a local support group or in an internet chat room. Several of these abound which can offer the support and advice you may need if you're living with Parkinson's disease.

Parkinson's UK is the main Parkinson's support and research charity in the UK. It has networks in many other countries too. The Daily Strength's PD Support Group offer good exchange of practical information, sharing of experiences and support. You may go onto any of these forums with unmoderated posts like the National Parkinson Foundation's NPF's Open Forum, NPF's Young Onset Forum or the PatientsLikeMe Forum. Some forums have moderated posts like the Smart Patients. Find the longer list here.

Care and support services

It's worth taking time to think about your specific needs and what would help you achieve the best quality of life. For example, you may wish to consider equipment, help in your home, and home adaptations.

4). Driving

If you've been diagnosed with Parkinson's disease, you must inform the Driver and Vehicle Licensing Agency (DVLA) in your country, and also your insurance company.

You won't necessarily have to stop driving. You'll be asked to complete a form providing more information about your condition, as well as details of your doctors and specialists



Reference:
1). NHS Choices: Parkinson's disease. Accessed 01.07.2010. Available here: http://www.nhs.uk/Conditions/Parkinsons-disease/Pages/Introduction.aspx
2). US Library of Medicine (PubMed Health). Parkinson's: Overview. Accessed 12.09.2017. Available here: https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0076679/
3). U.S. Department of Health and Human Services. Parkinson's Disease. Accessed 13.09.2017. Available here: https://www.report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=109

Article first written 01/07/2010. Rewritten 12/09/2017

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