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6th May 2021 Latest News

What To Do If My Diagnosis Is Changed?

Older man talking to doctor

Presenting motor and non-motor symptoms, scans and trialling how you respond to medications all assist a neurologist determine the most likely diagnosis of Parkinson’s.

Unfortunately for some, the process of obtaining a correct diagnosis may be even more complicated. There are several neurological conditions with symptoms the same or similar to Parkinson’s with points of difference that have an impact on the diagnosis and treatment plan.

While uncommon, some people may live for months or even years with a Parkinson’s diagnosis before a skilled neurologist is able to clearly identify the changes that indicate a different diagnosis is needed and a new treatment plan required.

It is natural that you may also experience a sense of loss and grief because of the many changes to your personal world. Your health professional will involve you in discussions about why the change in your diagnosis is considered, why changes in diagnoses can happen, and new or alternative treatments being proposed. Your reaction to this news may be quite unexpected.

Here is how one woman explained her reaction to a change in her diagnosis:

“In a sense the certainty of diagnosis was good – I ‘belonged’ somewhere, I attended support groups and exercise classes, I enjoyed many of their seminars and made strong friendships along the way.

“I felt I had a support network of people who understood my condition and accepted me unconditionally. Once my diagnosis was no longer Parkinson’s, I felt a mixture of relief, grief and confusion.”

Whatever the reaction to your changed diagnosis, you will need to give yourself plenty of time to process the range of emotions you will experience. In the next several months, your goal should be to think through the emotional and physical effects of your diagnosis and to learn all you can about the illness as well as the resources that can help you stay healthy, both mentally and physically.

Although there has been a change in your diagnosis, there are things that will not change:

THRF Group Parkinson’s is still your support agency for all neurological movement conditions. Support groups, seminars, recreational groups, Brain x Body Fitness Studio and all allied health support remain open to you.

Chances are there are still many Parkinsonian symptoms. The change in diagnosis does not change the treatment foundations to maximise your choice, independence, physical and emotional wellbeing.

Here are the four keys to living well with any neurological movement condition:

  1. Understand your treatment plan and any changes in medications. Making an appointment with a Parkinson’s specialist nurse or GP may help inform and guide you moving forward.
  2. Exercise will remain your best friend. Keep up with your current exercise regime you have in place. Inform your exercise physiologist or neuro-physio of the change in diagnosis so they are able to make adjustments, if necessary, to provide additional benefit where needed. Exercise will improve brain function, assist with mood and emotional regulation regardless of your diagnosis.
  3. Keep hydrated. A hydrated body and brain functions so much better than a dehydrated one. Balance, muscle cramping, mental cognition, bowel and bladder function are all improved when you are drinking at least 1.5 litres of water a day.
  4. Social and emotional wellbeing. Maintaining emotional health is essential not only for your physical health but also for your relationships and mental health. By focusing on your strengths, nurturing relationships, sharing your concerns and staying socially connected you can better cope with the potential challenges moving forward.
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