What do you really know about Parkinson's?
In this session of Caregiver Tip Tuesday, Spectrum Health Care teams up with Parkinson's Society Canada to bring you the Canadian Guidelines on Parkinson's Disease.
Did you know April is Parkinson's Awareness Month? For a disease that costs Canadians nearly $9 billion per year, it is surprising how many individuals nation-wide are unaware of the devastating effects of Parkinson's until they or a member of their family are diagnosed.
Over the years Parkinson's has gained international attention due to celebrities like Muhammad Ali and Michael J Fox who have been battling the disease for a number of years and advocating for its awareness. If your family member has recently been diagnosed with Parkinson's, it is important to have a detailed understanding of the diagnosis and the various treatment options available. Being educated about Parkinson's is an important tool to guiding and navigating your loved one's care.
Parkinson Society Canada recently published the first Canadian Guidelines on Parkinson's Diseasein the Canadian Journal of Neurological Sciences. While the document was originally intended for healthcare professionals, a growing number of Canadian families have turned to these guidelines to help them understand how to better care for their loved one. To help you get a head start we've highlighted two of the four sections outlined in the guideline:
Communication:
Communication is a key aspect of caregiving for any disease; with Parkinson's the relationship between yourself and your loved one can sometimes become complicated as the disease progresses. Learning to effectively communicate with your loved one can drastically reduce feelings of anger, resentment or even stress that your loved one may feel as their ability to communicate begins to change. The Canadian Guidelines on Parkinson's Disease encourage healthcare professionals to have a "person-centered approach" to the care and treatment of individuals with Parkinson's. This approach can also be used by caregivers as it relies on open communication between you and your loved one and allows your loved to be involved in their care decisions. The guidelines also state that when communicating with an individual with Parkinson's the following should be considered:
- Style, manner and frequency of communication that is compassionate and respectful
- Ease of access for those receiving information in a timely and appropriate manner throughout the progression of Parkinson's
- Honesty and sensitivity in tailoring information to meet changing medical needs
- Encouragement of self-management by people with Parkinson's to meet individual needs and preferences
Effectively communicating with your loved one about their current and future care and treatment can greatly ease anxieties that may occur in the future due to poor planning. It also empowers your loved one to feel that their decisions and choices will be honoured even as their ability to communicate may begin to decline.
Diagnosis and Progress:
The Guidelines also identify some common symptoms that caregivers can look for if they suspect their loved one might have Parkinson's. These symptoms include:
- Tremors
- Stiffness
- Slowness
- Balance problems or gait disorders
If your loved one is exhibiting any of these behaviours it is important to speak with your family doctor as soon as possible so that your loved one may be referred to a specialist who can determine if they have Parkinson's disease or another form of parkinsonism. While it may be easy to dismiss many of the above symptoms, the earlier that you are able to get your loved one diagnosed the easier it will be to plan for their future care.
For more information about The Canadian Guidelines on Parkinson's Disease or on Parkinson's disease visit Parkinson Society Canada's website.