Three years ago my aunt was diagnosed with Parkinson’s disease. I really did not know much about this specific disease and couldn’t believe she had the diagnosis. She was always in such good shape, didn’t overeat, smoke, drink, etc. Also, her lifestyle included a ton of exercises like waterskiing, snow skiing, swimming, rollerblading, sailing, walking, traveling and a lot of other healthy things. She continually watched her weight, ate healthy foods and paid particular attention to environmental issues. After doing a little investigating, I found that Parkinson’s affects more than one million people in the United States and that it is a slow, degenerative disease manifesting itself in stiff muscles, difficulty walking and other movement-related problems over time.
The actual definition of Parkinson’s disease, according to the National Institutes of Health, is a disorder that affects nerve cells, or neurons, in the part of the brain that controls muscle movement. In Parkinson’s, neurons that make a chemical called dopamine do not work properly. Dopamine normally sends signals that help coordinate movements. To date, there is no known cause and no cure. Researchers believe that both environmental and genetic factors may play a role in the development of the disease. They have found that a number of risk factors are clearly evident, including: advancing age, sex (males are more likely to develop Parkinson’s than females), family history, declining estrogen levels, genetic factors, low levels of B vitamin folate and head trauma. Fairly recent research (2007) included a study of 60 patients regarding head trauma and all of them showed evidence of trauma induced upper cervical damage. Some patients remembered a specific incident, others did not.
Parkinson’s usually begins around age 60, but it can start earlier – even before the age of 40. The early symptoms are subtle, progress gradually and are sometimes dismissed as the effects of normal aging. The four main early signs include trembling (or shaking) of hands, arms, legs and trunk, stiffness of the arms, legs and trunk, slowness of movement (bradykinesia) and poor balance and coordination. Despite common misconceptions, Parkinson’s disease itself does not shorten a person’s life; the late stage symptoms (mobility, poor balance and difficulty swallowing) can affect a person’s quality of life and raise the risk for fatal complications. Many people with Parkinson’s also face issues related to depression when the amount of dopamine in the brain decreases. Further, dementia and hallucinations are a possibility, although the onset for memory issues are generally noticed about 10 to 15 years after the first onset of Parkinson’s. Finally, late stage signs of Parkinson’s include continual tremor, drooling, stooped posture with the head leaning forward, a distinct slow shuffle taking small steps when walking and a blank stare.
Levodopa or L-Dopa is one of the most common Parkinson’s disease drugs. It is usually one of the first medications prescribed and basically works by increasing the dopamine levels. This particular drug can be naturally converted to dopamine in the brain. It does come with side effects, however, and include such symptoms as nausea and vomiting, hallucinations, paranoia, compulsive behavior, drowsiness and involuntary movements are seen with long-term use.
For our purposes, tips for caregivers are plentiful and include:
- Mobility aids/furniture – wheelchairs, walkers, recliners and electric lift chairs are options and many times will be partially paid by Medicare.
- Bathroom safety – grab bars, commode frames over toilet seats or raised toilet seats, wet wipes for toileting, non-skid bath mats and electric razors and toothbrushes to encourage self care.
- Incontinence products – pads and adult briefs in layers will help protect against wetting through onto clothes.
- Furniture – use sheet protectors and chair pads to save on constant laundering.
- Floor safety – Do not use throw rugs, but if the floor is slippery, use a short-napped rug with a rubber backing.
- Personal safety – Tie a whistle onto a long piece of elastic and place it around the neck, use a personal emergency response system (PERS) to summon help if needed.
- Mealtime – Aprons are helpful, cups with lids and straw holes help prevent spilling, purchase weighted and built-up utensils to help the hands remain steady.
- Car ease – a swivel seat will help with car transfers, pack a tote bag for a change of clothing, wet wipes, incontinent pads and water.
- Bedroom – consider purchasing an electric hospital bed with a trapeze for movement, guardrails may be needed and try nylon or silk pajamas for ease in turning in bed.
- Dressing – use Velcro shoes, zipper boots for winter and sport pants with elastic waistbands will ease dressing issues.
- Visual cues – purchase magnifying glasses, large wall clocks, talking watches and natural spectrum lamps will help those with impaired vision and encourage independence.
- Enriching activities – review photo albums, read the comics, enjoy walks in the park and attend a Parkinson’s support group.
As one can see, revising care procedures and modifying the home can promote successful caregiving. In addition, these ideas will uphold the dignity and independence of the Parkinson’s disease patient. Don’t be afraid to get rest for yourself; there is a lot of stress dealing with a chronic disease, and caregivers can wear themselves out without respite, proper nutrition and plenty of sleep.