Six Essentials for a Higher Quality of Life with Parkinson’s Disease
The Windsor of Venice
Dec 20, 2022
Florida - Sarasota, Bradenton & Charlotte Counties
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At Legend Senior Living, we observe National Parkinson’s Month every April, and it’s a special month for us, because many residents face the challenges of living with Parkinson’s Disease. If you’re new as a caregiver, loved one or a patient yourself, the path ahead may seem obscure, complex and uncertain. We’re offering a primer on a few resources we’ve found essential for living at home with Parkinson’s and for providing care and support to a loved one with Parkinson’s.
Education – Know the Symptoms and Causes
The first important thing to know and to keep at the top of your mind and heart is that a very good quality of life may be maintained with Parkinson’s. The disease itself is not fatal but can cause serious complications. Next, never attempt a diagnosis on your own, as with any health-related symptoms. Rely on your doctor and seek immediate advice. With that in mind, here’s a general list of symptoms from the Parkinson’s Foundation:
Tremor (shaking) usually at rest, often in a characteristic "pill rolling" motion of the thumb and forefinger, among other forms.
Bradykinesia – sluggish movement
Limb rigidity
Gait and balance problems
Those are the more obvious "motor" or movement-related symptoms. Others less obvious: apathy, depression, constipation, sleep behavior disorders, loss of sense of smell and cognitive impairment.
Parkinson’s destroys dopamine-producing nerve cells – neurons – in the the brain stem. There’s no cure for Parkinson’s or recovering the nerve cells, but patients can respond very well to treatment. This is the most basic description of Parkinson’s and its effects. The wealth of research and advice from Parkinson’s patients would fill a good-sized library.
The Parkinson’s Foundation is one single source for comprehensive information on care, treatment, support, research – virtually everything Parkinson’s-related. Rely on their website at parkinson.org for a more detailed description of the disease and ways to manage it.
Authoritative resources for Parkinson’s patients and their families:
Mayo Clinic
Parkinson.org
American Brain Society
Care.com
Caregiver
Dealing with Parkinson’s is not a solo endeavor. Even the most self-reliant among us find that help from a spouse, loved ones and friends is essential for both the physical and mental challenges. Sometimes comfort and reassurance is as key as physical therapy. Professional caregivers bring the advantage of skilled, experienced care that can take some of the mystery and fear out of the symptoms. These are generally compassionate, committed people who are also good company. There is, however, no substitute for a friend or relative close to the patient being knowledgable and engaged in their treatment and therapy. This can be a time of growth, sharing the achievements and the struggles. There’s much support for family caregivers in the Parkinson’s support organizations and in the medical community. Care.com offers a very comprehensive guide for caregivers: Caring for Seniors with Parkinson’s Disease: Advice for families and caregivers.
Support Group
The support online or in live groups near you is usually free, confidential, thorough and gives a personal angle on care and self-help that you may not get from the medical community.
Parkinson’s Foundation Helpline specialists help people with PD, caregivers and healthcare providers navigate every aspect of Parkinson’s, offering emotional support, sharing current PD-related medical information and guiding callers to local resources. The Helpline is available at (800) 4PD-INFO (473-4636) or helpline@parkinson.org.
Patient Safety Kit The Aware in Care hospital kit protects, prepares and empowers people with Parkinson’s before, during and after a hospital visit. It contains tools and information to share with hospital staff during a planned or emergency hospital visit.
Parkinson’s Foundation Expert Briefings offer first-hand access to Parkinson’s research and care leaders. Each free, hour-long online seminar offers practical tips for managing PD from experts.
Podcasts Episodes on medication delivery methods, exercise, clinical trials and nutrition.
PD Conversations A forum for those going through similar experiences, with subgroups for newly diagnosed, symptoms, caregiving, español and others.
Bookstore: A large collection of Parkinson’s disease publications to order (many free) or download on PD symptoms, diagnosis, treatment, research and ways to live well.
PD Library provides a free search engine that lets you search broadly or narrow your search to specific topics and is certain to turn up a wealth of sources.
Physical Therapist or Trainer
You’ll want a specialist who knows the particulars of Parkinson’s Disease. Physical therapy can achieve remarkable results if your therapist has a comprehensive program for you. Johns Hopkins Medicine lists all of the following:
Amplitude Training – This is generally repeated exercise in which you make exaggerated, "big" physical movements, like high steps and arm swings. The goal is to counteract hyperkinesia, or the small shuffling movements common to PD. Similar "big" exercises may be done for the voice.
Reciprocal Training – Reciprocal means equal movement on both sides, like swinging your arms while you walk, which Parkinson’s can affect. A recumbent bicycle or elliptical machine may be useful, but without machine assistance, just walking with a focus on the arm swing is very effective. So are dancing and tai chi.
Balance and Gait – Let your therapist guide you to improve balance and confidence in walking. The therapist will recognize the issues and give you specific ways to compensate.
Stretching and Strength – Stiff hips, hamstrings and calves are common to Parkinson’s. Daily work with a trainer is recommended. Strength training is great for any senior to prevent muscle atrophy, but especially important for Parkinson’s patients.
Psychologist or Counselor
We’ve focused a lot on the physical aspects of Parkinson’s, but the need for treating the mind and spirit is equally compelling. Some of the psychological challenges more apparent to caregivers and loved ones also have biomedical origins: dementia, hallucination and disorientation. Others are typical feelings of depression and anxiety that are aggravated and exaggerated by living with Parkinson’s. Severe anxiety is common and may take the caregiver by surprise. A qualified therapist with a specialty in Parkinson’s will be invaluable to both caregiver and patient. Consult your primary physician first for an assessment and referral.
See: “Tips for Daily Living: 6 Psychotherapy and Counseling Myths, Debunked” on parkinson.org.
Purposefully Designed Living Space
Adapting your home for living with Parkinson’s can seem daunting if you try to do everything at once. It may be advisable to begin in the early stages and gradually modify your living space with features you know you’ll need eventually. Johns Hopkins provides a succinct list of essential adaptations, by no means exhaustive, but certainly bases you’ll want to cover:
Overall Safety – smoke and carbon monoxide detectors are essential on every floor. You should avoid space heaters and electric blankets, which can be fire hazards.
Communication Ease – Easy-to-reach phones with oversized buttons and a voice amplifier are smart additions, along with a list of emergency numbers.
Adaptive Products – Your therapist can recommend assistive living devices to help with simple tasks that may become progressively more challenging: pen grips, reach-and-grab devices, canes and a walker or wheelchair.
Safer Living Areas – Handrails along walls and stairs are essential. Furniture should be arranged to allow more freedom of movement and escape routes from enclosed areas.
Adapted Kitchen – Switch foods and beverages to smaller, easier-to-handle containers. Consider special easy-to-grip forks and spoons, a lowered countertop and generally wheelchair-level access.
Bed and Bath – Bedrails and grab bars on the bath are useful, and clear a path between the bed and bathroom, with a nighlight for both. Showers are better than tubs for getting in and out.
Residences Designed for Senior Living
This is where a purposefully designed residence relieves many seniors in need of assisted living of the hassle of converting the home to a more mobility-friendly place. A well-designed senior living residence will have wider halls without sharp corners to make for unobstructed navigation. Apartments will already be fully equipped with emergency call systems, and bathrooms, bedrooms and storage built for easy access on walkers.
Generally, senior health is the focus of an Assisted Living and Memory Care residence like those of Legend Senior Living. So, residents often needn’t hire separate caregivers or home nursing for the particular demands of Parkinson’s. Family members find it much easier to visit and dine with their loved ones. As purposefully designed as the residence is, so are the activities that promote movement and mental stimulation. Residents find a vibrant social life, which aids greatly in dealing with depression and anxiety. Emergency assistance is right on the other side of the door at all times. Many find that such a residence can address all the challenges of living Parkinson’s at once and that they can spend their days focusing on the high quality of life possible when body, mind and spirit are well cared for.
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