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How to Prepare and Advocate for a Loved One with Parkinson’s

On July 28, 2022, the United States Congress introduced new legislation dedicated to ending Parkinson’s disease. This condition’s awareness has become more prominent over the years thanks to the actor Michael J. Fox, 61, who has lived with the condition since he was 29. His diagnosis pushed him to start the Michael J. Fox Foundation for Parkinson’s Research, which sets out to find a cure for Parkinson’s disease and develop improved therapies for those currently battling the disease.

Parkinson’s disease is one of the most prevalent disorders among older adults, affecting around 1% of adults over 60 and 5% of seniors 85 and older.

But what exactly is this condition, and how can you help your loved one live a full life with their diagnosis? It starts by understanding what Parkinson’s disease is, how it affects senior health, and what your loved one will need to manage their condition.

What is Parkinson’s?

Parkinson’s disease is a degenerative disorder that worsens over time. We now know that the condition starts in the brain. As nerve cells die, dopamine levels drop, leading to physical impairments, speech problems, and bodily function difficulties.

The condition affects a person’s nervous system due to the triggering of nerve death in the midbrain region. Many people think dopamine is solely a neurotransmitter in the brain’s “reward center,” but in actuality, it controls many vital functions throughout the body.

Effects of Parkinson’s Disease

As Parkinson’s progresses, people tend to experience deterioration in their physical mobility and bodily control. It is not uncommon for them to have extreme difficulties with motor skills and bladder and bowel control.

These symptoms stem from Parkinson’s attack on the substantia nigra – the nerves that produce dopamine. Currently, more than 10 million people worldwide live with the condition.

Early Signs of Parkinson’s

Most cases of Parkinson’s begin with a slight hand tremor. The tremor is persistent, and it can cause a continuous shake or someone involuntarily rubbing their finger and thumb together.

Other symptoms of Parkinson’s disease include:

  • Slower movements than usual. Steps can become noticeably shorter, and many people say they feel weak. Sitting, standing, buttoning garments, and other tasks can become more challenging and time-consuming.
  • A stooped posture. Your loved one may bend forward and have a hunched posture.
  • Reduced facial expressions. People developing Parkinson’s can have reduced emotional expression even when you know they would typically be smiling or frowning.
  • Decreased blinking. A “flat” facial expression with reduced blinking is not uncommon among people with this condition.
  • Muscle stiffness. Muscles often become stiff, especially around the body’s center, arms, and legs.
  • Speech problems. Your loved one may have a noticeable pause or slur before their speech, a flat tone of voice, speak slowly, or speak so fast that their words run together.
  • Handwriting changes. Handwriting can appear smaller and pushed together. People with Parkinson’s can also have a harder time writing as they normally would at their regular pace.
  • Drooling. Parkinson’s can cause some difficulties swallowing, leading to a build-up of saliva and drool running from the mouth.
  • Urination and bowel movement difficulties. Older people with Parkinson’s disease can experience changes to their bathroom habits and may struggle with incontinence or constipation.

Planning After a Parkinson’s Diagnosis

After your loved one is diagnosed with Parkinson’s, it’s normal to feel anxiety-ridden about the future. To become a strong advocate for their evolving needs, early planning can help them cope with progressive symptoms and maintain a good quality of life.

Here are some things you can do to help your family adjust to your loved one’s life with Parkinson’s disease.

Understand How Far Symptoms Reach

Parkinson’s disease alters how a person sounds, how they move, and what they can do without assistance. It’s important to know how your loved one’s condition currently affects them so that you can provide support at the right time and in the right ways.

It’s also helpful to speak with other family members, including children, and tell them why grandma or grandpa may act or sound different than they’re used to.

Talk About Important Decisions for the Future

After your loved one receives a diagnosis, it’s the best time to discuss what changes they’d like to make to their healthcare. Topics like wills, assisted living, and health powers of attorney are essential to discuss.

Help Them Stay Active

Exercise can help seniors with Parkinson’s disease improve muscle flexibility, range of motion, and balance. Take walks together, find exercises they can safely perform, and make physical activity a part of their daily routine.

Give Them Emotional Support — And Distance When They Need It

Everyone handles a life-altering health diagnosis differently. Some people may want to discuss their emotions openly, while others need space to process and move forward. Follow your loved one’s approach, and let them know that you are there with them every step of the way.

Your parent or grandparent likely has a lot of questions, fear, and anxiety about their future. Avoid overwhelming them with information; instead, opt for shorter talks as opportunities arise.

Make Home Modifications

Things like grab bars in the bathroom and rails to doorways and stairs can make living with Parkinson’s disease more manageable. Modifying your home for your loved one’s safety and comfort early in their diagnosis can make symptoms easier to manage and help them maintain a sense of independence and normalcy.

Becoming a Parkinson’s Advocate

As a Parkinson’s advocate, you help your loved ones get the care they need and deserve. Parkinson’s disease looks different for everyone, and part of advocating for Parkinson’s is talking about it so people understand what it is.

To become a Parkinson’s advocate, you can:

  • Join support groups and online communities.
  • Talk to specialized doctors.
  • Learn and share information about Parkinson’s disease and senior wellness.
  • Use advocacy resources to help promote awareness.
  • Support and donate to organizations fighting Parkinson’s, like the Michael J. Fox Foundation and the American Parkinson’s Disease Association.
  • Speak with Parkinson’s and senior care experts, like Reflections Management and Care’s care managers, to learn more.

Our care team are experts in senior care, including the specialized needs of those living with Parkinson’s disease. If your family has recently received a diagnosis or you want to find care services to help your loved one, please contact us today.

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