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Coping with Parkinson’s Diagnosis

Living with Parkinson’s disease is different for each person. Coping with a diagnosis is a slow process filled with a range of emotions and questions, but your reactions are normal and valid.

Some people immediately accept their diagnosis whereas others need more time. Each individual and reaction is unique and everyone goes at their own pace. 

The fact that the causes of Parkinson’s disease are unknown can make the acceptance process longer for some people. In any case, give yourself time to adjust to this new reality your life. 

You may not realize it at first, but you have the strength to overcome this hardship. Although the disease may change your life and the lives of those around you, you also have the power to act on it. You can reach out to help and resources available to support you daily and help you maintain a good quality of life despite a Parkinson’s disease diagnosis.

 

The causes of Parkinson’s disease are still unclear though researchers believe it may be a combination of genetic and environmental factors.

It is normal to ask yourself “why me?”, especially if no one else in your family has Parkinson’s. Unfortunately, knowing the exact causes of Parkinson’s disease is impossible, but you are not to blame for your disease.

Additionally, just because you have Parkinson’s doesn’t mean your children will get it. Familial Parkinson’s disease is still rare and accounts for less than 2% of cases.

Parkinson’s disease causes recurring bouts of grief. Your life will change and you will no longer be able to continue all your activities.

These are the stages most individuals go through before accepting their diagnosis and developing new life skills. A psychologist specializing in neurodegenerative diseases can help you go through these stages more easily.

  1. Shock and denial

    A diagnosis can come as a shock that leaves you feeling overwhelmed and staggered.

    You may then go into a period of denial, which is a temporarily effective reaction. During this phase, people deny the facts they cannot accept and refuse the information given to them. This is normally a short phase, but it can be a profoundly serious one if people are unable to get through it.

  2. Anger

    After becoming aware of your new situation, you may revolt against what you feel is an injustice. It is a painful and delicate stage to go through with strong internal contradictions: accusations, feelings of guilt, abandonment.

  3. Bargaining

    A Parkinson’s disease diagnosis is irreversible, but some people will try to bargain for a return to their old life by convincing themselves that they are and will always be able to do so.

    The people who reach acceptance more easily are those who commit to changing their lifestyle.

  4. Depression and pain

    Coming to terms with these future impairments can lead to a state of depression that often accompanies the diagnosis. People become passive, are unable to cope with daily life and see no way out of their suffering.

    Consulting a doctor or psychologist and taking antidepressants can help you overcome this difficult period.

  5. Acceptance

    You have internal resources that you have already used in your life. With help, you have the power to use them to overcome your pain and isolation.

    At this point, you may distance yourself from your diagnosis and the associated impairments and move into a questioning phase. You will face reality and understand that your life is changed forever, but that your self worth is not diminished. Parkinson’s does not define you.

Accepting a Parkinson’s diagnosis is a process unique to each individual. Give yourself the time you need to integrate these changes into your life.

In support groups, those who seem to be coping well with their diagnosis share this advice:

  • Take your time

    Your life will change but be kind to yourself. The diagnosis and its consequences will significantly impact your life. If you feel temporarily overwhelmed, you may only be able to stick to important aspects such as relationships and daily life management.

  • You will not always feel this way

    Most people diagnosed with a serious or life-threatening condition state that the intense feelings at the time of diagnosis do not last forever. Being accompanied through the stages of grief helps you accept your diagnosis more quickly.

  • Expect to understand only part of what you are told

    After the sudden announcement of a Parkinson’s diagnosis, you will likely be unable to absorb all the information that health care professionals will give you.

    You should not look for more information in the first few weeks following your diagnosis because this may increase your anxiety level instead of reassure you.

  • Choose the support system that works for you

    Getting support is necessary throughout the diagnosis acceptance process and throughout the course of the disease. Choosing who to talk to and lean on for support is an important part of the process and there is no right or wrong way of doing so.

    Joining a support group with members who you identify with in age, stage of the condition and experience can be crucial. Some people may prefer more personal resources whereas others prefer help and support lines.

  • Maintain your social network

    Maintaining an active social life is essential. Keep in touch with family and friends by talking to them on the phone, visiting them or communicating by email.

    Isolating yourself for long periods of time can slow down the acceptance process and contribute to the development of depression and anxiety.

    Even if you don’t necessarily feel like it, try to get in touch with others instead of waiting for them to make the first step. It is necessary for you to have a social network. If you feel depressed or anxious, talk to your doctor.

    Keep doing what you love, find a new hobby or consider volunteering. Social involvement and a sense of purpose are factors that seem to contribute most to slowing the disease progression.

You likely had plans, dream vacations or other things you wanted to accomplish in your future. You must now incorporate your condition into these projects. Although Parkinson’s is a progressive disease, it progresses slowly and differently from person to person.

Take advantage of everyday that passes and continue the hobbies and activities you enjoyed. For some, the diagnosis can be the opportunity to strengthen character and discover passions and qualities they would not have found otherwise.

Turn your fear into curiosity and learn all you can about the disease. Parkinson Québec has many resources to help you better understand the disease and live with it on a daily basis. Ask your loved ones for help or reach out to available resources for support.

You may never accept your diagnosis. Coping with a disease is a different process for everybody.

Some days will be harder than others. Be honest with your loved ones and tell them what you are feeling and what they could do to help. They will be able to better understand what you are going through.

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