April is Parkinson's Awareness Month. Parkinson’s disease is one of the most debilitating diseases and one that many of its victims don’t understand. It is the second most common neurodegenerative disease after Alzheimer’s, affecting more than a million Americans, most over 60. Symptoms of Parkinson’s disease include muscle rigidity, tremors, and changes in speech and gait. Parkinson’s causes are unknown but genetics, aging, and toxins are being researched. After a Parkinson’s diagnosis, Parkinson’s disease treatments are given to help relieve symptoms.
A survey conducted online by Harris Poll on behalf of The Michael J. Fox Foundation and AbbVie in early 2014 indicates many of these people don’t feel well-informed about treatments or the way the disease progresses. The survey found that only about half of patients reported feeling “informed or very informed” about living with Parkinson’s disease (53 percent) and how to understand if their disease is progressing (51 percent). Further, only 48 percent of the patients and 38 percent of caregivers reported feeling informed about where to turn to for support or information.
Caring for a Loved One with Parkinson's Disease
Parkinson ’s disease is degenerative neurological disease that inhibits many of the body’s functions. Although the path it takes varies depending on the individual, it typically interferes with a person’s ability to talk, walk, swallow and move. Parkinson ’s disease is characterized by trembling of the limbs, especially when the body is otherwise at rest, at a stooped posture with rigid limbs. The progression of the disease will leave the patient needing increasing amounts of help to perform daily tasks. The disease often begins when a person is in their 50s or 60s, but earlier or later onset is also possible.
An individual in the advanced stages of Parkinson’s will require additional care and as the disease progresses, professional care may become necessary. There are a number of things family members can do to help care for their loved as the stages of Parkinson’s disease progresses.
Making the home safe As the patient gradually loses control over their body, their home can become a mine field of potential dangers. You want to be sure the home is easy to navigate as their stride becomes awkward and assistance from a cane or wheelchair becomes necessary. Floor rugs should be tacked down and hard flooring should be cleaned only with non-skid floor wax. Furniture should be arranged in a way that makes the home wheelchair accessible. Lamps and lights should also be made accessible to your loved one so they are easily reached, yet not in the way or easily knocked over. Decorative items such as floor vases and other floor-standing knickknacks may need to be removed to make navigation easier and safer for your loved one.
Next, you will want to take a look at the furniture in the home. Casters on furniture such as kitchen chairs or bed frames should be removed or locked in place to become more stable. You may want to add short lengths of rope to cabinet or drawer pulls to make them easier to grasp.
Try to make sure items that are frequently used—dishes, tissues, toilet paper—are within easy reach.
Make the bathroom as user-friendly as possible by adding non-skid mats in the bath and near the sink to prevent falls. Also replace glass shower doors with plastic shower curtains. As the disease progresses, cognitive function will be affected as well. Marking cold water faucet handles blue and hot water handles red can help with this.
Streamlining Daily Tasks Seemingly simple tasks will become more difficult over time for a Parkinson’s patient. There are items available to make personal care easier, including adaptive handles for hairbrushes, combs and toothbrushes. There are also cups and glasses designed for those with Parkinson’s to be easier to hold, as well as eating utensils made with built-up or padded handles for easier use.
Suggestions for Physical Relief Massage can be of great use for a patient with Parkinson’s. Not only is the relaxing nature of massage helpful, but massage also can help to alleviate some of the cramps, tremors and spasms common with Parkinson’s. Mineral ice and heating pads are also useful tools for loosening stiff joins and relieving aching muscles. A rubber stress ball can also be beneficial. By squeezing the ball periodically, tremors may be reduced and fingers are kept strong. Exercise can also help keep muscles strong, which is important for a patient with Parkinson’s.
Have Patience with the Patient Parkinson’s can be a very frightening disease. As mobility is lost and cognitive ability decreased, a patient with Parkinson’s can become sad, frustrated and confused. It is important to remain calm and patient with your loved one. Speaking in calm, encouraging voice can be a comforting way to help them through some rough moments. Try not to rush them, as rushing tends only to make matters worse and frustrate the patient even further.
Parkinson's Disease Resources
In honor of Parkinson's Awareness Month in April, we have put together some of the best resources to help families that are caring for a loved one with Parkinson’s disease.
The Parkinson's Disease Foundation - The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy.
Michael J. Fox Foundation for Parkinson's Research - The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease and to ensuring the development of improved therapies for those living with Parkinson’s today.
National Parkinson Foundation - The National Parkinson Foundation works to improve the quality of care for people with Parkinson’s disease through research, education and outreach.
American Parkinson Disease Association - American Parkinson Disease Association (APDA) is the country's largest grassroots organization serving the millions of people with Parkinson's disease, their caregivers, and families.
Parkinson's Action Network - Parkinson's Action Network is a nonprofit organization and the unified voice of the Parkinson's community, advocating for better treatments and a cure.
The Parkinson Alliance - The Parkinson Alliance (based in Kingston, NJ) is a national non-profit organization dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson's disease.
The Parkinson's Resource Organization - Parkinson’s Resource Organization is a 501(c)(3) non-profit charitable organization that provides group and individual support to those making the journey through Parkinson’s.
Parkinson Study Group - The Parkinson Study Group (PSG) is a non-profit group of physicians and other health care providers from medical centers in the United States, Canada and Puerto Rico experienced in the care of Parkinson patients and dedicated to clinical research of Parkinson disease.
Parkinson's Disease Research, Education and Clinical Centers - The Parkinson's Disease Research, Education and Clinical Centers (PADRECC) and Consortium Center Network is a nationwide hub and spoke model of care across the VA Healthcare System for veterans diagnosed with Parkinson’s disease and other movement disorders.
Parkinson's Institute and Clinical Center - Parkinson's Institute and Clinical Center is the only independent non-profit organization in the US combining world-class care, clinical research, and laboratory research for Parkinson’s disease under one roof.
National Institute of Neurological Disorders and Stroke - Parkinson's disease information compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
BrightStar Care specializes in the care of individuals living with neurological disorders — including Alzheimer’s care, Dementia, amyotrophic lateral sclerosis (ALS), Parkinson’s, Multiple Sclerosis and more — and we can help you overcome the challenges, both physical and emotional, you face in meeting their needs.
If someone you love is living with Parkinson’s and needs additional support, contact your local BrightStar Care office to learn more about the support we can provide.