• Allie Beckmann

Caring for Someone with Parkinson's Disease



Parkinson’s disease (PD) is a progressive, neurodegenerative disorder, which means the disease results in the slow degeneration of nerve cells. Symptoms will vary from person to person and evolve over time, but common symptoms include:

  • Tremors

  • Bradykinesia (unusually slow movement accompanied with great difficulty)

  • Muscle rigidity

  • Walking and balancing problems

Someone living with PD might also be affected by non-motor symptoms such as apathy, depression, constipation, sleep disorders, loss of smell, and cognitive impairment.


The cause of Parkinson’s is largely unknown, and currently, there is no cure. However, it is still very possible to live a good quality of life with PD.



Early Signs of Parkinson’s Disease

In the early stages of the disease, it might be hard to tell if you or a loved one has PD. Listed below are some early signs you might have Parkinson’s. If you are experiencing more than one, consider seeing your doctor.


Tremor

Shaking of the hand, finger, or chin while you are at rest is a common sign of PD.


Loss of Smell

There are a number of reasons you might lose your sense of smell, such as allergies or a common cold. If your sense of smell seems to be getting weaker and not coming back, ask your doctor about Parkinson’s.


Small Handwriting

A change in your handwriting may be a sign of Parkinson’s called micrographia. Notice if you are writing your words smaller and more crowded together than you used to.


Trouble Sleeping

Most of us can experience sleep issues from time to time; quick movements and jerking around are pretty normal when falling asleep or lightly sleeping. However, if you are thrashing around in bed while you are in deep sleep, it might be a sign of PD.


Stiff Movement and Trouble Walking

If your stiffness doesn’t seem to go away after some movement, this might be a sign of Parkinson’s. Some people report their feet to feel “stuck to the floor,” or their arms don’t quite swing like they used to. Early signs of stiffness might show up in the shoulders or hips.


A Soft or Low Voice

If you or other people have noticed a change in your voice that doesn’t self-correct, consult with your doctor if it is a sign of Parkinson’s Disease.



Caring for Someone with Parkinson’s

No one ever plans to develop any kind of illness or disease. So what happens if someone you love develops Parkinson’s? Here are a few tips to guide your journey.


Anticipate change, and take it one day at a time. Parkinson’s Disease will change over time, so your role might be hard to define. And since we can’t predict the future, it’s best to stay present with where we are today. Communicate often and be gracious. Simply keeping this in mind can promote a flexible mindset and mitigate stress for you and your loved one.


Talk with an experienced caregiver. They will be able to give insight into experiences you might face in the future as well as share coping strategies. They can also provide reassurance that the disease progresses slowly for most people and high quality of life is very possible.


Decide together how you want to share the news with friends and family. Spend time thinking about this upfront and create a plan that feels good for everybody. The Parkinson’s Foundation website has a great tip sheet for how to handle this very important topic.


Learn as much as you can as early as possible. This will help you anticipate what kind of situations you might encounter in the future which can guide the questions and support you seek today. Being prepared and informed can also reduce stress and anxiety.


Find a PD support group. Being in a community with others who are going through the same experience as you can be healing and supportive, for both the person with PD and the caregivers. Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org for help finding a group near you.



Care Tips for the Caretaker

Friends and family can often underestimate the level of care and effort that is needed as a caretaker of someone with Parkinson’s. Remember, in order to care for someone else, you have to make sure your needs are being met, too.


Take the focus off Parkinson’s. Commit to focusing on gratitude and the blessings you do have. While it can be easy to feel consumed by Parkinson’s, remember you still have a choice as to where you focus and what you talk about. Celebrate the good moments.


Get real about your needs. Non-judgmental self-awareness is key so that you can recognize signs of your own stressors early on. Know your coping strategies and use them early and often.


Reach out for help when you need it. There is no shame in asking for help and taking a break. Have a community in place, and communicate with them clearly and early. This way you will know ahead of time who to call, and they will know what to expect.


Take care of your body. Caring for someone with Parkinson’s can be physically strenuous and exhausting such as when you need to help them re-position or bathe. Utilize easy home remedies, such as Epsom salt baths or gentle yoga, in addition to a network of bodyworkers who offer therapies such as massage, acupuncture, or physical therapy.



To order free caregiver resources or speak with PD Specialists, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

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