Mental coping strategies
Why is important to differentiate Young Onset Parkinson's?
People who are diagnosed with Parkinson's disease at a younger age have a different social experience because they are at a different stage of their career and often have less time to devote to their own care. They may also have children or plan to have children and have concerns about passing on Parkinson’s genes.
Why is it important to talk about your Parkinson?
Parkinson's disease can affect anyone, young or old. It can be highly depressing and isolating to be diagnosed with Parkinson's disease at a young age. However, you are not alone.
Around 10% of diagnosed people are young (40 years old or lower). The terms young onset Parkinson's, early onset Parkinson's, and young onset Parkinson's disease (YOPD) all refer to the same condition. You have Parkinson's disease, but you were diagnosed at a young age.
A diagnosis of young-onset Parkinson's disease affects everyone differently. Some people experience a range of emotions, from overwhelmed to relieved. Studies show that 30% of diagnosed people suffer from depression after being diagnosed.
''Don't fall under the trap of depression. Parkinson disease is not a sentence to death.''
Most people with it have the same life expectancy as well (expect for people who develop other neurological conditions such as dementia). And you know how best to avoid depression? Well it's simple... Talk to other young people who have Parkinson's disease. Talk to me. Talk to your friends, or family members, to your trusted colleagues, to your employer. You decide when and how to talk to them, but it is essential for you to talk about it in order to you to consider it as the new normal and find the right strategies to continue enjoying life, while managing your symptoms. Talking to others who are in a similar situation to you can be beneficial. This list of online support groups run by and for younger people in the UK can help you connect with other young people living with Parkinson's disease. Also, there are many associations that are not affiliated with Parkinson's UK. You can contact them if you need additional assistance, but the charity is not responsible for their content, services, or the accuracy of information provided. I'm providing you with some links below to either contact me or any of the associations mentioned above.
Read these articles to learn more about the mental coping strategies after a Parkinson diagnosis
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Coping with YOPD After Diagnosis
Being diagnosed with Parkinson at an early age can be upsetting and unexpected. However, it should not prevent you from achieving your objectives. When you're ready, consider your current family and professional obligations and create a new long-term plan. Take it one step at a time as you work toward your goals.
When notifying your employer, consider the following factors:
1. About your work environment
The nature of your relationship with them: If you have a good relationship with them, you may feel comfortable telling them early on.
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Your symptoms' nature, extent, and progression: For example, fatigue, poor handwriting, tremor, or gait or balance issues may make it difficult to perform some of your responsibilities.
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The nature of your job and your ability to carry it out safely: If your Parkinson's disease poses a risk to your or another employee's health and safety, you should notify your employer.
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Your career stage, financial commitments, and family responsibilities
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The psychological significance of working for you: If your job gives you self-esteem and fulfilment, you may be less willing to quit.
2. About your symptoms
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If your symptoms are not particularly noticeable, you may choose to delay telling anyone at work.
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However, if you must conceal them, you may find this stressful, and stress can exacerbate some Parkinson's symptoms.
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Even if you think you're hiding symptoms well, they may be noticed, and others may draw incorrect conclusions if you don't explain.
3. About your career plan
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You may understandably be concerned about telling people for fear of receiving a negative response or losing entitlements, promotion opportunities, or your job.
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However, informing your employer and co-workers early on can be beneficial because their support can make continuing to work much easier.
4. About your co-workers' reactions
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If you decide to say something, think about what information you want to share ahead of time - you only need to provide as much detail as you want. You will retain control over what you share or withhold for the time being if you plan ahead.
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It is also a good idea to consider how your colleagues will react and how you will respond to the obvious questions they will ask.
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If you tell your manager but do not want to tell your co-workers, ask your manager if they will share information on your behalf.
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You may also find that your coworkers ask you questions about your condition; if you can provide them with information, they will be able to better understand your condition and support you at work.
5. About being referred to a work doctor/ therapist
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When you inform your employer that you have Parkinson's disease, you may be referred to a doctor or an occupational therapist who specialises in assisting employees with long-term health issues.
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They will assess how your condition affects your ability to perform your job and will make recommendations to the organisation to make your role easier to perform.
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It is critical that you communicate freely with any doctor or occupational therapist so that they can fully understand your job and your condition and make recommendations.