Every Day Living with Parkinson’s

Depending upon your age of onset, how you manage the symptoms, and your general health, you can live an active life with Parkinson's. In most cases, one's life is not shortened. However, as you age and as the disease progresses, there will be increased risks. For example, impaired balance can lead to pneumonia. Parkinson's is known as a chronic (long term) condition that will require ongoing monitoring and management to maintain one's quality of life.

Each person with Parkinson's is unique and each person may experience different symptoms. However, since Parkinson's is a progressive condition, symptoms will worsen over time and new ones may appear. It is difficult to estimate how quickly or slowly Parkinson's will progress in each person. It may progress more quickly in people who are older when the symptoms first begin. Parkinson's may progress less quickly when the main symptoms is tremor, especially when it starts on one side.

What approach can I take? 

Learn as much as you can about Parkinson's. Your local Parkinson Society has many resources to help you manage the condition.

Reducing stress in your life will make a difference. Join a Parkinson support group. Some people find yoga and tai chi helpful. Humor can also be a great stress reducer. Staying as active as possible and maintaining a positive attitude is important. Many people find that a creative activity such as painting, singing, playing an instrument, dancing or writing poetry helps. Even if Parkinson's affects your balance, you can still have a balanced life!

What do I need to know to plan my life? 

Take a stock of your life and communicate with those who are close to you (care partner, family, friends).

Work options. Discuss options with your employer, such as adaptive technology or reduced work load. If it becomes necessary, find out if retiring early is an option. Many people who reduce their workloads find they are able to focus on managing their Parkinson's (e.g. more time to keep physically fit).

Finances. Will your benefit/medical plan cover drugs and other expenses, such as speech therapy? Do you have a retirement and/or pension plan? Do you qualify for disability insurance or the disability tax credit? Contact disability professionals before reducing your work hours to determine if this will affect the amount of eligible funding.

Legal and health planning issues. Discuss power of attorney and advance care planning with your family now. Discuss what quality of life means for you. By talking about these issues now, you can impact your care in the future (*Information on advance care planning varies from province to province. Contact your local Parkinson Society for appropriate resources).

Care issues. Seek the care of a neurologist or movement disorder specialist. Together you can develop a care plan that will meet your needs. Monitor your symptoms and communicate any changes so adjustments to medications can be made.

Personal choices. As Parkinson's progresses, you will be faces with making choices about your life. Symptoms and medications can affect your ability to drive safely. Knowing this may happen and planning for it can make the decision easier. You may choose to stop driving.

Are you newly diagnosed? 

The Parkinson's journey will be different for everyone. To help you stay the course, think about what is important to you. Some things to consider may include:

• How you will manage your Parkinson's symptons
• How you will minimize the side effects of medications
• How you will maintain your emotional well-being
• How to ensure you continue your work or hobbies
• How you will maintain relationships with family and friends
• How you will maintain your independence 

Whatever you choose, maintaining your quality of life on a daily basis is important. 

Where can I find information? 

Contact your regional Parkinson Society or visit www.parkinson.ca.

April is Parkinson's Awareness month. Parkinson Society Canada salutes the everyday heroes who demonstrate extraordinary hope.  

By: Grace Ferrari, Parkinson Expert at Agecomfort.org Health Care Resource Centre

Photot Credit: Tim Parkinson

Tips for Caregivers

Parkinson's is a family disease; one that takes a team of involved and supportive loved ones to help a person with Parkinson's thrive. In most cases however, the bulk of responsibility lies with one main care partner -a spouse, a child, or a friend. For this individual, life is changed forever and they must take on many new roles when their loved one is diagnosed with Parkinson's. Theirs is a demanding job involving compromise, encouragement and strength. Their focus is on providing emotional and physical support, advocating on behalf of their loved one, and learning all that they can about Parkinson's disease. 

Lessons Learned

Over and over care partners report similar experienced about the challenges they face. Because of the progressive nature of Parkinson's, a care partner is challenged to know what degree of support their loved one needs at any given time. It is important that a person with Parkinson's is encouraged to speak for themselves and manage their own life for as long as possible; however, the care partner is a key member of the team. The relationship is sometimes described as one that begins as "partner" and evolves into "care provider". 

Here are a few practical steps for care partners to follow: 

1. Be an active member of the team: Attend medical appointments and be involved in every decision about your loved one's care. Research shows that people with actively involved care partners tend to do better. 
2. Ask questions until you understand the answer: Parkinson's is a complex, neurodegenerative disorder and as such, there is a lot to understand. Don't hesitate to ask questions until you feel comfortable that both you and your loved one understand the answer fully -this includes information about medication (what it's for, side effects, when to take, things to avoid). 
3. Keep your loved one honest: People tend to leave out important pieces of information when speaking with their doctor/neurologist either due to embarrassment or they simply think it doesn't matter. It is very important that care partners encourage their loved ones to tell their doctor everything including symptoms, changes in behaviour, other medications or supplements. 
4. Speak up for your loved one: Sometimes people with Parkinson's simply cannot communicate for themselves so care partners must speak up for them. 
5. Know what hospitals and/or care facilities have expertise with Parkinson's disease: Lack of Parkinson's education is the primary complaint that Canadians with Parkinson's and their care partners have about health care professionals coast-to-coast. If you have the opportunity, choose a facility that understands how to best care for someone with Parkinson's disease. 
6. Get to know the nurses: Whether in hospital, a care facility or at the movement disorder clinic, get to know the nurses that will be caring for your loved one. If necessary, explain the importance of administering medications on-time and act as a Parkinson's resource for them -your efforts will not only benefit your loved one, but every person with Parkinson's who needs care in the future. 
7. Take the opportunity to educate: Whether in a hospital, walking down the street or sitting in a restaurant, chances are that some aspect of Parkinson's will draw the attention of others to your loved one. Make the most of the situation by explaining what is happening and letting others know how they can help. 
8. Become an expert about supports & services: Find out what kind of support is available in your community and what the criteria for qualification are (home care, disability, CPP, tax credits). 
9. Befriend another care partner: Having someone who understands your situation can be invaluable. Over 240 Parkinson support groups operate coast-to-coast -simply contact your Parkinson Society Canada regional office to find the group best suited to you. 

You may find additional resources for caregivers online by visiting www.parkinson.ca and clicking on the Living with Parkinson's tab. 

By: Grace Ferrari, Parkinson Expert at Agecomfort.org Health Care Resource Centre

Photo Credit: Rosie O'Beirne