YOUR PARKINSON’S: WHERE ARE YOU NOW

The course of Parkinson’s varies from person to person, so not everyone experiences the same symptoms. Some people have quite mild symptoms for many years, while for others the condition advances more quickly, leaving them with limited mobility.

Signs of advanced Parkinson’s

As your Parkinson’s progresses, you may notice more pronounced movement issues (motor symptoms) or fluctuations.

After years of taking medication for Parkinson’s, the smooth and even control of symptoms that the treatment once gave you may no longer be dependable. You might experience fluctuating symptoms known as motor fluctuations:

DYSKINESIA

Involuntary movements of the limbs and/or head are a side effect of the long-term use of oral medication.

‘ON/OFF’ MOBILITY

Like a light switch being turned on and off, as some people describe it. These periods of unpredictability may last for up to several hours.

WEARING OFF

“Off” periods can occur before the next dose of medication is due, this is known as ‘early wearing off’. As Parkinson’s progresses, ‘on/off’ fluctuations become less closely related to the timing of the medication dose and become more unpredictable.

TELL YOUR DOCTOR

It’s very important to tell your doctor if you experience these, because they can have such a big impact on your life – often greater than your mobility problems. They are also a major cause of hospitalisation and need for professional care.

Download booklet Download symptom checklist

YOUR TREATMENT OPTIONS

It isn’t possible to say with certainty if or when your doctor might advise moving from one treatment phase to another. Your doctor may suggest other treatment options to help improve your quality of life, when your current medication is no longer meeting your needs. Any treatment options will be aimed at managing your symptoms so that you can continue with your everyday activities as normally as possible.

Treatment options for Parkinson’s include oral medications or non-oral therapies.

ORAL MEDICATIONS

Oral medication can be taken to improve the main symptoms of Parkinson’s disease, such as shaking (tremors) and movement problems. Over time, you may experience problems with your medication wearing off and changes and additions may be made to your medication regimen to manage your symptoms.

NON-ORAL MEDICATIONS

Pump therapy –
intestinal gel infusion

A type of levodopa which comes as a gel can be continuously pumped into your gut (small intestine) through a tube which is surgically inserted through your abdominal wall. An external pump is then attached to the end of the tube, which you carry around with you. Patients are required to stay in hospital in order for the tube to be implanted and for observation while the external pump is fitted and adjusted.

Pump therapy –
under the skin

Medication can be injected under the skin (subcutaneously) by a continuous infusion. This requires a needle and infusion line to be fitted to an external pump, which you carry around with you. Patients receiving continuous infusions are required to stay in hospital so the needle and infusion line can be set up.

Neurosurgery
(brain surgery)

This is a form of brain surgery called deep brain stimulation. The procedure involves having very fine wires inserted into the brain to conduct electrical impulses to the affected nerve cells. The wires are connected to a unit that is implanted under the skin of the chest. A hand-held device lets you switch the stimulation on and off as needed.

Treatment Decision

In making a treatment decision, your doctor will discuss with you how your condition is affecting your quality of life, and whether you have other health concerns. Your doctor will also explain the risks and benefits of treatment, including any side effects that may occur.

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OTHER SYMPTOMS: WHAT TO WATCH FOR

Sometimes, the other health (non-motor) symptoms of advanced Parkinson’s can be more difficult to manage than the motor fluctuations. Non-motor symptoms can include:

  • Anxiety
  • Apathy
  • Constipation
  • Dementia
  • Depression
  • Fatigue
  • Sleep problems

When you have Parkinson’s, particularly in its advanced stages, you can experience a wide range of symptoms – and no two people will have the same pattern of symptoms over the same time frame. This emphasises the importance of effective communication between you and your doctor or other healthcare professionals. Tell them about any health problems you’re having so you can get the right treatment for your needs.

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YOU AND YOUR WELLBEING

Parkinson’s can significantly impact your everyday life, especially as symptoms start to progress. It can take time to get used to, accept and cope with the changes that will continue to throw up new challenges. Below are some ways to help you face these challenges:

Keeping healthy

Staying active and focusing on your general health can help you manage your Parkinson’s.

Staying active

Keeping both mentally and physically active can help to fight fatigue and maintain muscle strength and maximise movement. A regular exercise routine can help you maintain your abilities, strengthen your muscles, increase mobility in your joints and build up your general fitness and health.

Practical lifestyle tips

Some people find that rethinking their environment can help them to manage their condition and improve their quality of life.

  • Remove clutter – having fewer obstacles in the house can simplify movement.
  • Avoid buttons – wearing clothes without buttons helps make dressing easier.

Making changes together

The support of the people around you is particularly important. Tell them how your symptoms may be progressing and let them know what changes you feel you need to make as a result.

Your social life

Keeping your friendships going, as well as looking to your spouse or family for support, can help you manage more easily. Having your friends and family around as your condition changes can provide an emotional boost.

Talking & sharing

You may find that you can avoid unpleasant or embarrassing situations by being open about your symptoms and explaining how you’re affected. This can help others understand what you are experiencing.

CARING FOR YOUR EMOTIONAL WELLBEING

Changes to your symptoms may have an effect on the way you feel. Being aware of these feelings, and noticing how your changing symptoms are affecting you, can help you to manage this situation. Here are a couple of ways to cope if your Parkinson’s is getting you down:

Share your thoughts & feelings

Talking honestly about your emotions can often help you consider them afresh and work on ways that can help. Uncertainty about the future direction of your Parkinson’s can lead to feelings of anxiety or stress. Making plans with your friends and family about managing your condition in the future may help ease some of this uncertainty.

Ask for help

Make sure you take advantage of emotional support when you need it most. Managing a lifelong condition can be emotionally draining and lead to anxiety and depression. Being able to talk to people and get your thoughts and feelings off your chest can play a big role in managing your Parkinson’s.


Download booklet Download symptom checklist

DOWNLOAD THE ‘LIVING WITH PROGRESSING PARKINSON’S DISEASE’ BOOKLET

This booklet aims to help you identify the signs of advanced Parkinson’s and understand how they might be affecting you. It also outlines the treatment options for advanced Parkinson’s and provides further guidance on things you can do to help manage your condition as it progresses.

You can also download a symptom checklist to help identify your needs and understand what you are going through as your Parkinson’s progresses. Take this to your doctor to discuss your options for living life well.