Living with Parkinson’s Disease

By MARION NIGLIO KANENSON

A diagnosis of Parkinson’s disease can be overwhelming and even somewhat isolating. However, more and more resources are available to people with Parkinson’s disease to support them and their families and caregivers. It is critical to have those supports in place early on in the disease.

Not only are those with Parkinson’s disease coping with the disease, but their caregivers are as well. Welcoming support from others helps to ease the burden.

Approximately 1 million people in the U.S. are living with Parkinson’s disease, as are more than 10 million people worldwide. Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year.

Parkinson’s disease is a chronic and progressive disease. It is a neurodegenerative movement disorder that causes symptoms of tremors, rigidity or stiffness of the muscles, and slowness of movements that can progress over time.

Many symptoms of Parkinson’s disease are unrelated to movement; these are non-motor or “invisible symptoms,” which are common. These symptoms can cause sleep problems, fatigue, constipation, anxiety and depression, and a soft or low voice.

Symptoms can fluctuate, causing “on and off” periods throughout the day. By exercising, obtaining adequate sleep, and getting proper nutrition, those with Parkinson’s disease can improve mobility and quality of life.

It is very important for people with Parkinson’s disease and their family and caregivers to reach out for the support of others through local support groups, national Parkinson’s disease nonprofits, educational materials, and many resources available in their communities.

Attending a local support group can help you to understand that you are not alone and that someone else is in a similar situation. Members in a support group help each other feel nurtured and comforted. You can gain knowledge and tips about the disease and even new lifelong friends throughout your journey.

As an active member of your care team, educate yourself about Parkinson’s disease, find a healthcare professional you are comfortable with, and talk with your doctor and loved ones to decide on treatments.

As a caregiver of someone with Parkinson’s disease, educate yourself about symptoms, the progression of the disease, and treatments. Remember to take time for yourself, as you are vital in maintaining the quality of life for your loved one.

In central Pennsylvania, there are several support groups, exercise groups, and educational symposiums.

Caregivers and their care receivers who have been affected by Parkinson’s disease can join a community of support at the Harrisburg Area Parkinson’s Disease Caregiver Support Group. I started this support group 10 years ago, and we continue to

meet every third Thursday of the month from 6-8 p.m. at the Linglestown Giant community room.

You can also join the Parkinson’s disease support group at the Helen M. Simpson Rehabilitation Hospital, which provides available community resources for those with Parkinson’s disease.

Below is a list of resources, including online resources to educate the community and raise awareness for those with Parkinson’s disease and also their caregivers:

• Pennsylvania Chapter of the American Parkinson’s Disease

Association, www.apdaparkinson.org

• PD Fitness at Home, www.parkinsonsfirstpa.com – Online fitness classes

• Parkinson’s Foundation, www.parkinson.org – Provides people with Parkinson’s disease and caregivers access to local resources and services

• Help with Parkinson’s, www.helpwithparkinsons.com – A local nonprofit offering podcasts

While progressing through the stages of Parkinson’s disease as the patient or caregiver, learn all you can about the disease early on so you can make informed decisions now and as needed in the future to live better every day.

Fortunately, no one has to feel isolated when dealing with Parkinson’s disease. Help, support, and advice are readily available so you don’t have to take this journey alone. Marion Kanenson started the Harrisburg Area Caregiver Support Group 10 years ago. Her father had Parkinson’s disease for almost 30 years, r and she realized there was a need for support for primary caregivers, like her mother. As the disease progressed, more outside supports were necessary. Caregivers need to know they are not alone on this journey and that they need to take time for themselves. Meetings consist of speakers, education, and an empathetic listener, a shoulder to cry on, lots of hugs, and even chocolate!