How to Support Someone with Parkinson’s

How to Support Someone with Parkinson’s

Life can look very different for those living with Parkinson’s disease, but everyone’s journey will be unique. As a loved one, your priority will likely be prioritising their comfort, peace of mind, and safety. While these factors are universal, there are also other things you can do to support them through their illness.

Supporting someone with Parkinson’s disease can be difficult. It can include learning as much as possible about the disease, keeping them active and doing things they love, helping them with daily activities, accompanying them to doctors appointments, listening and being patient, and making life as normal as possible for them.

Whether you are confronted with a new diagnosis of Parkinson’s for someone you care for or you have been providing a patient with Parkinson’s disease support for a long time, there are a lot of important factors to consider. There are many treatment options to manage the symptoms of Parkinson’s, but the support and care from loved ones will make the difficulties of the illness that much easier to digest.

What Are The 5 Stages of Parkinson’s Disease?

Parkinsons is a progressive neurological disease that breaks down certain cells in the nervous system which results in the characteristic symptoms. It is divided into 5 stages to help us better understand and diagnose the disease:

Stage 1

In the first stage of Parkinson’s, a patient will likely show mild symptoms that shouldn’t have much impact on daily activities such as:

  • Slight difficulty walking
  • Mild issues with balance and posture
  • Movement issues on one side of the body like tremors, rigidity, and bradykinesia (slow movements)
  • Small changes in facial expression

Stage 2

When symptoms from Stage I start to worsen, daily activities can be more difficult and symptoms appear more frequently, but someone at this stage is still able to look after themselves. They may experience symptoms such as:

  • Movement issues such as tremors, rigidity, and bradykinesia affecting both sides of the body
  • Difficulty walking
  • Balancing issues
  • Poor posture
  • Reduced facial expressions

Stage 3

This stage, also known as mid-stage, has more severe symptoms than those at stage II, but people experiencing stage III can also still be independent. Loss of balance and bradykinesia are more pronounced and daily activities such as bathing and cooking can be difficult. Falls are also more of a concern at this stage.

Stage 4

At this stage, daily activities such as eating, bathing, and dressing are almost impossible to achieve without support. A person experiencing Stage IV may be able to stand on their own but require assistance to move around. Assisted living arrangements are commonly implemented at this stage.

Stage 5

This is the most severe stage where stiffness in the legs can make even standing without help unlikely. Someone at Stage V will likely be bedridden and require a wheelchair as well as around the clock support. They may also experience:

  • Delusions
  • Hallucinations
  • Loss of smell
  • Constipation
  • Weight loss
  • Poor memory
  • Vision issues
  • Sleep deprivation

What To Say To Someone Who is Diagnosed With Parkinson’s?

It’s hard to know the right thing to do and say when loved ones are faced with a degenerative diagnosis like Parkinson’s. While some people might be able to cope with these situations, others may want to scream, cry, or avoid the situation. Both reactions are perfectly normal and understandable. It’s important to remember that as much as you may want to support them, you too are dealing with all the questions and emotions that come with this kind of diagnosis. Don’t be too hard on yourself!

With this in mind, people with extensive experience regarding what to say and what not to say to their loved ones living with a chronic illness frequently recommend some of the following:

Don’t ask: How are you feeling?

Instead, say something along the lines of, It’s great to see you. I’m so excited to tell you about (something you have a common interest in). While How are you feeling? is a reasonable question to ask most people, especially if they are recovering from an accident or a stomach bug, asking this question when it comes to chronic illness keeps it front and centre. They likely have to answer that question multiple times a day. Help them focus on something different other than the obvious and make sure they know you’re happy to be there.

Don’t say: You don’t look sick.

Instead focus on the positive and say something like, You look good! Some days, they may not display any signs of their illness, but there are invisible signs and symptoms that we can’t see. Don’t reduce the illness to its outward manifestations, but instead let them know you appreciate the depth of what they’re dealing with.

Don’t say: I know how you feel.

Instead, say something along the lines of, I’d love to know more about Parkinson’s if you’re up for sharing. If you don’t have Parkinson’s, you don’t know how they feel. It’s natural to want to connect with them or to imagine how someone feels by using other experiences to try to relate. But, in reality, this can diminish the other person’s feelings. If you want them to feel comfortable talking with you, be humble and let them share their experience with you.

Don’t say: Everything will work out.

Instead, say, I want to help any way I can. False hope and positivity when faced with a chronic illness is not necessarily helpful, it’s better to face it, acknowledge it, and let them know they can count on you throughout their journey.

Don’t say: Let me know if I can do anything.

Instead, outline when and what you can do, Would it be helpful if I came on the weekend to help with some housework? Not only is an open ended offer harder to accept, it puts more work on your loved one to decide how they need help. Allowing a yes or no response to your offer is helpful and will be more easily accepted.

How To Support Someone With Parkinson’s

Watching a loved one take on the burden of a disease like Parkinson’s can be frightening and you may feel the effects first hand. Your loved one will require extra support to continue living a good quality of life.

Learn all you can about the disease – inform yourself about the disease, what causes it, what the symptoms are, and how to manage it. This will have a huge impact on helping you and your loved one deal with it. Do lots of research from reputable sources such as the Parkinson’s Foundation, or go to doctors appointments with your loved one and ask questions. By being well informed, you’ll be better equipped to manage the disease with them.

Help with everyday tasks – day-to-day activities that we all have to do like cooking, cleaning, bathing, or shopping can be difficult for people with a neurologic disorder. The simple things that we take for granted can take a lot longer to achieve, and people living with the disease may be too proud or embarrassed to ask for help. You can help by offering to take off the burden of running to the store, cooking a meal, picking up medication, or doing chores.

Exercise – being active is important for us all, but especially for those living with Parkinson’s. The Parkinson’s Foundation Quality Improvement Initiative found that exercise is a vital component to maintaining balance, mobility, and daily activities as well as having a potentially neuroprotective effect by helping the brain produce dopamine, an essential neurochemical involved in movement.

Listen to them – Let them talk about their emotions and let them know you’re listening. Living with a degenerative and unpredictable disease can induce anxiety and depression which are both common side effects of Parkinson’s. This can be diminished by having the support of the people around them.

Keep an eye out for new symptoms – Be aware of any changes or worsening of symptoms such as difficulties with walking, speech, balance, fatigue, or coordination. These symptoms will likely progress over time. Depression is also a common symptom and, without treatment, can lead to faster physical decline. Help them get the support they need from a doctor or therapist.

Be patient – the common symptoms of Parkinson’s such as losing strength, volume in their speech, and slower movements are likely to be disconcerting. Make time and don’t rush them. Speech and physical therapy can help with these symptoms, but if they get worse, encouraging them to use alternatives such as a walker or wheelchair and other forms of communication will help them to get around and communicate.

Stay as normal as possible – talk about and continue to do things they love. You may need to think outside the box and make adjustments, but the more normal their life stays, the healthier they will be. Try to keep their spirits high by not focusing on the disease.

Supporting a loved one through Parkinson’s Disease can be frightening, confusing, and isolating. Our specialists at Maple Community Services have a lot of experience and are ready to help in whatever capacity you need us. Get in touch with us and take the first step in finding productive solutions together.