Parkinson

In this section we will try to share with you simple, reliable and understandable information about Parkinson Disease designed to support you and the people you care for or who care for you.

Our goals are:

  • To better understand the disease
  • To find practical instructions for everyday life
  • To feel more secure in the care you provide
  • To learn about the importance of Palliative Care

The information in this page serve as a support and does not replace clinical examination and advice of your physician.

Please always consult a qualified health care professional, for anything that concerns you.

Parkinson’s disease is a progressive neurodegenerative disorder that causes problems in the brain and worsens over time. Although it is not considered a potentially life-threatening disease, it reduces a person’s life expectancy by increasing the likelihood of infections, falls, and other complications.

Parkinson’s disease occurs when the brain loses nerve cells that produce dopamine. Dopamine helps control body movements.

Parkinson’s disease affects 1 in 100 people over the age of 60, and men are affected slightly more often than women.

The main motor symptoms of Parkinson’s are:

  • trembling
  • stiff muscles (rigidity)
  • slowness of movement
  • balance problems

Other non-motor symptoms are:

  • depression and anxiety
  • fatigue and sleep problems
  • low blood pressure
  • memory problems and dementia
  • constipation
  • urinary urgency
  • dental problems
  • eye problems
  • foot problems
  • difficulties with speech and communication

All of the above (and more) can occur at any time, but can worsen in the later stages of the disease

Currently there is no cure for Parkinson’s disease, although there are treatments and medications that can help manage the symptoms.

The main action of medications for Parkinson’s disease involves mimicking dopamine with the aim of controlling motor symptoms, tremor, rigidity, and bradykinesia.

When medications are stopped or their effect weakens, the symptoms of the disease worsen. After changing the medications, the symptoms of Parkinson’s disease can be controlled again.

In some cases and depending on the symptoms, therapeutic intervention with deep brain stimulation (Deep Brain Stimulation – DBS) could be used in the context of surgery, improving some of the motor symptoms.

The intervention methodology involves inserting electrodes into areas of the brain that control movement and allows the transmission of electrical signals through a device implanted under the skin (similar to a pacemaker).

Some of these treatments and medications may become less effective in the advanced stages of the disease.

It is very difficult to predict how quickly Parkinson’s disease symptoms will worsen. Some people with advanced Parkinson’s disease live for many years. For most people, it takes years for the disease to progress to the point where it causes serious problems.

The following signs may indicate that someone may be in the last 6 to 12 months of their life:

  • falls more often
  • has slower and more rigid movements
  • needs to stay in bed/chair for more than half a day

  • reduced communication or cognitive function
  • weak voice that makes communication difficult

  • depression and anxiety
  • hallucinations or delusions 
  • changes in mood and behavior
  • psychotic disorders
  • dementia

  • Requires multiple medications to manage symptoms
  • Gets worse day by day, or faster
  • Presents less predictable symptoms
  • Loses weight
  • Difficulty swallowing, which can lead to breathing difficulties
  • Has repeated unplanned hospital admissions
  • Hurts

  • Seek to involve the patient in their care plan
  • Collaborate with the team that manages the patient’s medication, and discontinue the medication if it is not appropriate
  • Make sure the patient has the opportunity to develop a preventive care plan.

You should support the person by helping them manage their symptoms, which may include:

  • Pain
  • Communication Difficulties
  • Medication Management at the End of Life

Pain


75% of people with Parkinson’s disease will experience pain at some point* (https://www.parkinson.org/library/fact-sheets/pain). Pain can result from both motor and non-motor symptoms. In the later stages of the disease, pain may be more frequent and severe.

Identifying the cause of the pain can help in successfully relieving the pain. For example, in the final stage, if withdrawing Parkinson’s medications worsens the pain, we continue to maintain the medications. If the pain is not related to the Parkinson’s medications, we treat the pain with common pain medications.

Effective pain management significantly improves the quality of life of Parkinson’s patients and keeps them comfortable.

Towards the end of life, communicating with someone with Parkinson’s can be difficult, since speech and writing can be affected. The patient may need more time to choose the right words or it may take you longer to understand what they mean.

It is very important to take the necessary time to communicate the patient’s wishes and have all the important discussions early in the patient’s care time.

Communication suggestions 

  • Ask the person you are caring for how they prefer to communicate
  • Make sure you look at each other when you talk
  • If the person uses hearing aids, check that they are working properly – for example, check the settings and batteries
  • If the person uses glasses, check if they work well or if another aid is needed
  • There is always the possibility of non-verbal communication
  • Be patient – ​​they may need extra time to respond
  • Reduce noises, such as the radio or television
  • Ask for clarification
  • Avoid interrupting them
  • Try not to speak for them

Consult, if necessary, a speech therapist, who should be able to guide you on how to communicate.

At the end of life, in the context of palliative care, drugs that inhibit dopamine thus worsening Parkinson’s disease, should be avoided.

People with Parkinson’s disease will continue to take their usual medications for the final stages of their lives, unless someone advises stopping them since they have stopped controlling symptoms or cause side effects.

In some cases, for example, due to a difficulty swallowing pills, it may be necessary to take medication through a feeding tube.

Caring for someone with Parkinson’s disease can be demanding. Those who care for someone with Parkinson’s may need caregiver support.

  • We help caregivers network with the available local support service network, if there is one available.
  • We provide caregivers information about the way they can manage advanced Parkinson’s disease relatively early in a patient’s care. This can help to facilitate critical discussions about how the patient would like to be cared for in the future.

For more information regarding what Galilee could offer you as support if you have Parkinson’s Disease please call 210 66 35 955, business days and hours.


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