Although researchers have learned a lot about Parkinson’s disease in the last decade, there are still a lot of unknowns about this degenerative disease that affects residents of Dubuque and elsewhere, including optimal times to consider hospice care or other support options.
The team at Above and Beyond Home Health Care and Hospice works with a variety of clients with different medical conditions, including some with Parkinson’s disease.
We work hard to keep current on our research and make sure we do everything we can to help their quality of life, especially since it can be such a challenge as the disease progresses.
Plus, some people have lived with the condition for years and may observe their symptoms getting worse, while other people may just have been diagnosed with it in their 60s or 70s so are still coming to terms with how to live with it, as well as learning about possible end-of-life options when the condition reaches a certain critical point and the brain reaches a certain level of degeneration.
General palliative care may be recommended for those dealing with advanced Parkinsons’s disease. Even if they don’t have a terminal condition like cancer, they still have a diminished quality of life and they may need visits and support from a caregiver. Another option is to relocate to an assisted living community that can provide a higher level of care, but many people prefer to live at home as independently as possible for as long as they can.
Having Parkinson’s disease though may require more help, especially as it progresses to the point where hospice or palliative care discussions may need to be held.
More about Parkinson’s disease
According to the Parkinson’s Foundation, about 1 million Americans have this condition, and 10 million worldwide. The number who have been diagnosed is lower, but the number regularly increases, with roughly 90,000 new diagnoses each year. At the same time, experts suggest there are many with the symptoms who haven’t been properly diagnosed.
The number is also expected to rise to about 1.2 million by 2030. It is currently the second most common neurogenerative disease in the U.S. following Alzheimer’s disease. The rate of new cases is also growing – previous research showed 60,000 new cases each year.
The Mayo Clinic defines it as a progressive disease that affects the nervous system and parts of the body controlled by nerves.
Although some symptoms may show earlier in life, most people are officially diagnosed in their 60s when the neurological damage is more noticeable. The possibility of a diagnosis also increases past age 65.
For instance, speech may become more slurred as the disease progresses. Arms may stop swinging and then start shaking. Facial expressions also may change from nothing to slight involuntary tremors.
It affects everyone but is more common in men than women.
Because it’s becoming such a common disease, more research is taking place into ways to prevent it or at least reduce or control some of the symptoms.
Some prescriptions can work for some people, but some types do come with some side effects. Surgery is also an option for some. Living with Parkinson’s also comes with some lifestyle changes.
Even some things that can seem basic can provide some relief in some people with Parkinson’s, such as regular exercise and a healthy diet.
Parkinson’s and end-of-life care
Unlike Alzheimer’s disease which ultimately is fatal, Parkinson’s by itself is not classified as fatal. However, complications from it can be fatal or at least gradually decrease quality of life.
For instance, the constant tremors and muscle pain can influence other areas of life. It can contribute to a lack of sleep. It can lead to falls. It can contribute to depression. It can lead to a poor immune system. It could lead to a lack of motivation or a lack of interest in going out and being social.
But if the symptoms become too advanced, such as dementia, constant pain, recurring symptoms like pneumonia, or dramatic weight loss, conversations may need to take place with their healthcare provider, family members, and representatives from a local hospice program.
The latter group may be able to discuss what type of support is available for a client and their family or what kind of timeframe is expected.
If the decision is made to enroll someone, they can be provided with various therapies, which can include massage, occupational therapy, and physical therapy.
Medicare generally requires someone to be expected to pass away within six months. However, they can still enroll and be re-assessed every six months. The decision can be made for them to continue this level of care or even be discharged if noticeable improvements are seen.
Interest in supporting people with Parkinson’s in general palliative support, including end-of-life care, is growing. The Parkinson’s Foundation is encouraging more training in the hospice community specifically related to this condition.
For those interested in learning more, April is designated Parkinson’s Awareness Month, based on the birth month of Dr. James Parkinson, who first published information about the disease in 1817. It’s an opportunity for increased awareness and the need for more research into cures and treatments.