Living with PD
One of the key things to remember is that most people with Parkinson’s disease continue to live long and rewarding lives. Living with Parkinson’s does require continual re-adjustment as the disease slowly progresses through to severe disability.
Depending on the level of impairment, daily activities such as getting dressed, driving and eating may become more challenging. Roles within the family, in the community and at work may need to be redefined. An individual’s sense of who they are can also be challenged if the disease adversely affects intimate relationships. Medical treatment can help control symptoms and improve function but it requires careful management to minimise potential side effects.
Family responsibilities can be daunting enough without the addition of a chronic and ultimately disabling disease. Parents need physical strength and stamina to keep up with an energetic young family and participate in all their activities. Having children can also help you to focus on the here-and-now. They provide a powerful motivation to stay active and as well as possible.
The typically slow progression of Parkinson’s disease means most people with it will not miss out on full participation in and enjoyment of family life. Relationships, roles and responsibilities within the family may subtly change as the disease progresses but there is sufficient time for that adaptation.
Children should be included in much of the discussion about Parkinson’s disease and its impact. They are more likely to cope better themselves when they are kept appropriately informed. Ultimately they may become one of the main sources of support for a parent with Parkinson’s disease, so having them on the team early is to be encouraged.
Starting a family
For younger people affected by Parkinson’s disease, the decision about whether or not to start a family is a difficult and uniquely personal one. It will depend very much on circumstances such as severity of disease and family support, as well as personal values and goals. Decision-making is complicated by the fact that there is not a lot of reliable information available, because relatively few young people are affected.
There is evidence that some anti-Parkinson’s medications are not suitable for use during pregnancy or when breastfeeding. However, other medications appear to be safe for the foetus. It is unclear whether or not the physical and emotional demands of pregnancy, childbirth and parenthood can exacerbate Parkinson’s disease in some people. Balancing those potential risks against a strong biological and emotional desire to have a child, will require thoughtful consideration. Medical advice, open discussion with family and friends, counselling and, perhaps, talking to someone who has been in the same situation, may all be helpful.
A diagnosis of Parkinson’s disease does not mean the end of participation in the workforce. Depending on the nature of the work, mild symptoms such as a slight tremor in the non-dominant hand may not affect your employment at all. Given that our sense of identity and self-esteem is often strongly associated with our work role and ability to produce an income, it is indeed preferable to remain in the workforce for as long as practical.
There are several issues to consider and strategies you can adopt in order to maximise your ability to work safely and productively while also living with Parkinson’s disease.
When symptoms start causing problems in the workplace, it may be time to start on medication, or have your current medications reviewed and adjusted. See your doctor for advice on more effective symptom control. Surgical treatment options may also be discussed for younger people.
Telling your employer that you have Parkinson’s disease depends on you – your relationship with your employer and colleagues, and the nature and extent of your symptoms. Often there is a reluctance to disclose for fear of negative attitudes, loss of entitlements or promotion opportunities and even job loss.
However it is illegal in Australia for employers to discriminate against employees or potential employees on the grounds of disability. There are also potential benefits from being open and honest with your employer, including the opportunity to take advantage of flexible work practices or job redesign.
Relatively simple adjustments in the workplace, such as the installation of a handrail, may make a huge difference for people with Parkinson’s disease. Depending on their job and their most problematic symptoms, other people may benefit from the removal of specific tasks such as those requiring motor skills and coordination or heavy lifting. Flexible work practices such as regular breaks, reduced hours or working from home may also be helpful to accommodate fluctuating symptoms. Talk to your workplace health and safety officer or human resources staff. If they can’t help, they will be able to access external advice.
If it is impossible to continue in your present job, check with employment agencies about other options. They have a responsibility to assist people with disabilities. Whatever the outcome, remain active. Try to find other purposeful activities that utilise your skills and keep you interested and busy.
Sexual relationships are a normal, healthy part of adult life and having Parkinson’s disease should not deter people from continuing to enjoy intimate activities. However it is worth understanding that the disease can impact on people in different ways and some adjustments may need to be made.
Some people find their sex drive has all but disappeared since their diagnosis of Parkinson’s disease. This can be a result of the worry and stress associated with any new circumstances and may gradually settle down as people learn to accept and cope better with the diagnosis. Fatigue is also a well-known cause of loss of interest in sex. Prioritising some time when you are rested and relaxed and symptoms are well controlled can help maintain an intimate relationship. Parkinson’s disease may have a direct, adverse effect on erectile function in some men. People can be reluctant to talk about their sex life with their doctor but it is an important subject that can make a significant difference to your quality of life. Erectile dysfunction may be treated by specific medications or may be remedied by adjustments to the anti-Parkinson’s medications.
Parkinson’s disease can also interfere with sexual activity at an emotional level. People with the disease may not feel sexually attractive as their self-esteem may have taken a battering or they may be depressed. There may also be new issues arising in long-standing relationship, especially as the disease progresses and one partner takes on a caring role for the other. It is therefore important to keep the lines of communication open. Talk to your partner about how you are feeling, how they are coping and what can be done to rejuvenate the relationship.
Don’t worry that sex may be too strenuous or exacerbate symptoms in people with Parkinson’s disease. Physical activity is almost always a good thing. And a healthy sex life is likely to be a great comfort and a distraction from day-to-day problems.
Sexual problems can arise completely independently of Parkinson’s disease. Ageing, menopause and other illnesses such as cardiovascular disease or prostate problems can all impact on sexual interest and activity. Check with your doctor if there are ongoing problems that need to be investigated.
A driver’s licence is a symbol of independence in our society and, for that reason alone, most people want to retain the ability to drive for as long as possible. The desire to be independent and to maintain a current lifestyle has to be balanced against good sense and judgement when it comes to the likely impact of Parkinson’s disease on an individual’s ability to drive safely.
Your doctor has a key responsibility in the assessment of fitness to drive and will help you decide when your disease has progressed to a stage where an unconditional licence is no longer appropriate. Physical symptoms that restrict your movement, or uncontrolled involuntary movements can obviously interfere with your ability to control a vehicle. However mental clarity and judgement, which can be affected by either the disease or medications, are also critical factors in road safety.
Doctors do not “take licences away” and, in fact, are in the best position to help keep you on the road. So it is important to be honest with your doctor about the progression of your disease and your level of symptom control. He or she can then advise you on the right time to notify the driver licensing authority in your state or territory about your disease and help you with more effective treatment. Even when your disease has progressed to this stage, conditional licenses can be issued if your disease is well managed. Conditional licenses are usually reviewed each year.
Drivers of commercial vehicles such as buses and trucks have to satisfy more stringent requirements than other drivers and may need specialist medical assessment.