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Parkinson’s disease is a journey not just for yourself but your family and loved ones as well. Everyday family responsibilities can be a challenge so you may want to sit down and talk with your family about planning and strategies for a way forward - together. You may need to discuss who does what in the household, or how things are done. Holidays and travel, cooking, exercise and getting around may need a bit more planning or just a couple of changes.
Your family is a very important part of your Parkinson’s journey. Children for example should be included in much of the discussion about Parkinson’s disease and the journey that you and your family will be on. They will need to adjust to this change too however children are extremely resilient and often accept change better when they are keep appropriately informed and made to feel part of the journey. You may find that they are some of your strongest supporters; so having them on the team early is to be encouraged.
Families can look different to everyone and may include friends, work colleagues, health professionals, etc. Including your extended family in your Parkinson’s journey is important as it educates them on what you are going through. This allows them to have an improved understanding of your Parkinson’s to enable them to empathise and support you and each other as needed.
Share your Parkinson’s journey and live your best life with the people that mean the most to you!
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, for many it is preferable to remain in the workforce for as long as practical.
There are a number of 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.
Telling your employer that you have Parkinson’s disease depends on you -your relationship with your employer and colleagues, 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 fine 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 manager. If they can’t help, they should be able to talk to someone who can.
For some it may become difficult to continue in your present job at some stage after diagnosis, check with employment agencies about other options. There are many options available and you may enjoy a change in work. 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 should not deter people from continuing to enjoy intimate activities. The condition impacts people differently so how you feel, and what your needs are, will be different to other people.
Some people find their sex drive is lower since their diagnosis of Parkinson’s . 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 may have a direct, adverse effect on erectile function in some men. Ageing, menopause and other illnesses such as cardiovascular disease or prostate problems can also impact on sexual interest and activity. Erectile dysfunction may be treated by specific medications or may be remedied by adjustments to the anti-Parkinson’s medications. Talk to your doctor as it is an important to check what is going on.
Parkinson’s can also interfere with sexual activity at an emotional level. People with the disease may not feel sexually attractive. There may also be new issues arising in long-standing relationship especially as the disease progresses and one partner takes on a more caring role for the other. Talk to your partner about how you are feeling, how they are coping and what can be done to meet everyone's needs in the relationship.
Sex is a normal part of life, and won't be too strenuous or exacerbate symptoms in people with Parkinson’s. Physical activity is almost always a good thing.
Having Parkinson's doesn't mean you have to stop driving. Talk to your doctor as they will help you decide when driving is no longer possible. 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 on-road safety.