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Parkinson Society British Columbia is the voice of British Columbians living with Parkinson's.  Our purpose is to ease the burden and find a cure for Parkinson's disease through advocacy, education, research and support services.

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600 - 890 W. Pender Street Vancouver, BC  V6C 1J9
Tel: 604.662.3240
Toll Free: 1.800.668.3330
Fax: 604.687.1327
info@parkinson.bc.ca
 
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Parkinson's Disease / Living with Parkinson's

Living with Parkinson's




Adapting to Your Diagnosis

Adapting to Parkinson's can be difficult. It means adjusting to a diagnosis, recognizing that life is being changed, maintaining independence, and at the same time acknowledging when seeking help is appropriate. Feeling helpless at times is a normal reaction to these changes and some days will be easier than others.

In the process of adjusting to these changes some people can be troubled by:

  • Persistent high levels of anxiety*
  • Intrusive thoughts
  • Body self-absorption
  • Hypersensitivity
  • Social withdrawal
  • Inability to tolerate frustration
  • Anger
  • Depression*

* Depression and anxiety are symptoms of PD and may be present before physical symptoms appear.

Psychological support may be helpful in alleviating some of these difficulties. Facing the problems and seeking help require courage and resourcefulness. Having difficulty is not a sign of character weakness or failure.

Adapting to Parkinson's includes making adjustments over time in several areas:

  • Lifestyle and work life
  • Concerns of the spouse or partner
  • Telling children

As the disease progresses, some changes may be necessary. Lifestyle is a personal matter and changing it requires a thoughtful assessment of what is most important about it currently, what can be adjusted, and what has to be completely changed. It is helpful to discuss possible changes with those who might be most affected your spouse, partner, family.

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Coping: Finding Help & Gathering Support

Help can be obtained in many ways such as:

  • Contact PSBC for information
  • Check out a Support Group
  • Go online to investigate chat rooms
  • Talk with friends and family
  • Find expert medical care and support
  • Gather information from other reliable sources

Sometimes, people with Parkinson's, or anyone with a chronic illness, may be reluctant to seek help. Asking for help may mean recognizing that symptoms are worse or that some new ones have developed. It may mean spending more time with specialists when you are already seeing multiple physicians.

Remember, everyone seeks help in their own time and reluctance at one point in time can change to willingness at another time.

This process can be frustrating for family and friends who want their loved one to get help right away. (This can also be true when a person has not been diagnosed with Parkinson's but has worrisome symptoms.) It is important to remember that everyone has their own ideas of independence and decision-making and everyone needs to seek help in their own time.

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Gathering Support from Family and Friends

Many people feel awkward about asking for help. Sometimes it can be difficult to admit that we are unable to do things as easily as in the past. Nonetheless, it is important to be as clear as possible with the people around you regarding the help and support you need. It is so easy to fall into the trap of thinking that those closest to us know intuitively what we need. They don't!

When help is offered, how often do you respond with: "No thanks, I'm fine." When you are not fine? Take some time to consider what stops you from accepting help that is offered. Consider some positive responses that would serve two purposes: clearly identifying what would be helpful for you and clarifying what role the helper could play.

"Thank you for offering. I don't need help making my dinner, but it would help tremendously if you could carry my laundry downstairs for me."

"Yes, I'd love some help with grocery shopping, and just so you know, I'm really slow at it and I'm usually in the store for close to an hour. Do you have time for that?"

"No, there isn't anything I can think of right now thanks, but can I call you if something comes up? Sometimes I need a ride to the doctor's office would that be possible?"

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Taking Control: 10 Steps to Help You Cope with Parkinson's

1.

Get information from a reputable source
Contact PSBC and ask about information packages and other resources.

2.

Start talking about the diagnosis
Proceed at your own pace and share information with family and friends.

3.

Create a resource file
Use a binder, folder or file box to keep the information you are gathering. Use the Parkinson Society British Columbia Medication Card to keep track of your medications.

4.

Get the most from your doctor
Be prepared when you go for appointments. Make a list of your questions and your observations about your health and your medications since the last appointment. Take a notebook with you and write down the answers and suggestions. Take a family member or friend with you if at all possible.

5.

Look for help and support
When you are ready, check out Support Groups and chat rooms. Support groups can provide a wealth of information about Parkinson's-friendly professionals in the community.

6.

Plan for the future
Don't put off important decisions, especially legal, healthcare and estate planning. Talk to your family about your concerns.

Visit the Nidus Personal Planning Resource Centre and Registry and contact us for information on Advance Care Planning.

7.

Maintain an active social life
Don't isolate yourself from family and friends. Keep in touch by phone, visits or email. If you feel depressed or anxious at times, ask your doctor about available treatment. Continue doing the things you enjoy!

8.

Learn how to pace yourself
If fatigue is a concern, speak to your doctor. Exercise can boost energy levels as can regular naps during the day. Remember, overdoing it will temporarily worsen your symptoms.

9.

Eat well
A well-balanced, healthy diet can benefit anyone, but for people with Parkinson's it takes on added meaning. Your diet should include foods from all four food groups: grain products, vegetables and fruit, milk products and meats and alternatives. Parkinson's may present some food-related challenges as it progresses and some dietary modifications may be needed. Talk to your doctor or consider asking for a referral to a registered dietitian.

10.

Stay active and exercise regularly
A good exercise plan can help your body cope better with Parkinson's. Try walking, gardening, or swimming and make it part of your daily routine.

Exercise classes can provide social benefits as well. Check with your doctor prior to starting any new exercise or activity program.

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Spouse, Partner and Family Concerns

Parkinson's can raise many concerns for the spouse, partner, and family. Worry about the future, the risk of disability, job loss, economic loss and increased dependence can induce anxiety and depression.

It is important to talk about common fears or concerns and for a spouse or family member to feel that they understand the disease and its possible progression. It is very useful, if possible, for those affected by the diagnosis to attend the doctor's appointment along with the person with Parkinson's, so they have an opportunity to ask questions or raise concerns. They may also remember more clearly information that the doctor provides.

Some people have a hard time adjusting to the changes that are necessary when their spouse, partner or family member has Parkinson's. Talking about the situation can sometimes be frightening and overwhelming. Some may refuse to engage in any discussions of Parkinson's. It may not be their intent, but avoiding these difficult situations can rob the person with Parkinson's of much-needed support.

Every couple handles things in a different way and in their own time. However, avoiding the issues or allowing resentment to build can threaten the relationship and the successful adaptation to the illness. Psychological support in the form of a therapist or family counsellor may be necessary and helpful.

For more information, see:

Our section on Caregiving and
Our pamphlet: Caregiving and Parkinson's
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Role Changes

Role changes due to Parkinson's are common. As the person diagnosed is no longer able to do things they once could, the spouse/partner or family member may need to take on these responsibilities. These role changes are different for every family and couple. They can include handling finances, gardening, cleaning the house, driving, ironing, duties related to children and/or grandparents, or entertaining at home.

Role change is complicated by several things:

  • We have an idealized view of our role and the role of others.
  • Letting go of some roles can create a feeling of deep loss.
  • We may be relieved to let go of certain roles but not of others.
  • Some roles are new and must be learned.
  • We have done some things all our lives and these activities may be difficult to give up. eg: the "breadwinner" may feel a sense of loss of confidence or loss of status within the family, if they no longer are the primary wage-earner.

It is useful for the person with Parkinson's to do what one would in any good relationship: discuss concerns, address fears, plan before any change is needed, and evaluate the change once it has taken place.

Consider these questions:

  • Is it working?
  • What roles do you currently have in the family?
  • What roles are becoming more difficult for you? What about that role is difficult?
  • Can the role be broken down to different tasks?
  • Can you continue all the tasks, some of them, or none?
  • Can some of the difficult parts be handled by someone else - your partner, child, friend or paid assistants?
  • Is the one assuming the role knowledgeable, ready, and willing to take it on?
  • Which roles are critical to the family's well-being?
  • Will the person assuming the new role feel overwhelmed, burdened, or anxious?
  • What measures can be taken to reduce anxiety and burden?
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Talking to Children about Parkinson's

You may be reluctant to tell your children that you have been diagnosed with Parkinson's. Often this reflects a fear that your relationship with your children will alter and that you will be seen differently by them: no longer the strong, in-charge parent, but a weaker version of what you once were.

Parkinson's affects children as well as a partner. Telling them may help them cope with changes that they may be observing but do not understand. An open discussion can be beneficial to all concerned. Young children can understand if the information is presented simply. They will take their emotional cues from you. If the information is presented in a matter-of-fact way, children are less likely to feel overwhelmed or burdened.

Children will benefit from the opportunity to ask questions, voice their fears ("Is it contagious?", "Will you die?") and seek reassurance. It may come as a relief to you to have the opportunity to explain the changes that your children may be observing and establish realistic expectations for the future. Adolescents, particularly, may find it difficult to accept the physical changes that accompany Parkinson's.

Children and adolescents may go through similar stages as their parents (denial, resentment, anger, and acceptance) as they attempt to understand the changes in their life. If children are having difficulty accepting the situation, professional counselling may be considered.

Books

PSBC has several children's books in its library, two of which are listed below, as well as Help Sheets on communicating with children/teens. Please click here to visit our Information and Resources section.

My Mommy has PD...But It's Okay! A Guide for Young Children about Parkinson's Disease

This booklet was developed to assist parents in talking to children about PD and in answering some of the more common questions children ask about the disease. It provides an opportunity for discussion within families and will be beneficial to all who have been looking for a way to talk and share feelings about Parkinson's disease.

I'll Hold Your Hand So You Won't Fall A Child's Guide to Parkinson's Disease
A beautifully illustrated comprehensive overview of Parkinson's disease geared towards elementary school level children or younger.

Help Sheets

 

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Employment Issues

Many people with Parkinson's have successful, satisfying work lives and early in the disease they may make no changes in their normal work habits or routines. As the disease progresses however, evaluation of what can realistically remain the same and what needs to be altered may be required.

Important questions concerning employment:

  • Can I continue to function in my job at the same level? If not, what part of my job has become more difficult and can adjustments be made so that I can address those difficulties at work?
  • Can I continue my job with different expectations?
  • Is anything at work a safety risk for me or for others?
  • Can I change my job to one that is more appropriate to what I am able to do?
  • Should I consider going on disability?
  • Am I forcing myself to maintain the same schedule as before and getting more and more exhausted?

Fatigue at work is often cited as a major problem. Check whether your medications may be contributing to the problem and whether those medications can be adjusted.

Some ways of conserving energy at work include:

  • Having a nap during the lunch-hour.
  • Scheduling important business meetings or difficult tasks at a time in the work day when you tend to feel your best.
  • Reducing your hours, overtime, travel time.
  • Using a computer to take notes if your writing becomes difficult.
  • Asking someone else on the team do the presentation if your voice becomes too soft.

 

Telling Your Employer

Telling your employer that you have Parkinson's is a very personal decision and many factors go into the decision. Common concerns may include:

  • Job security
  • Fear of negative reactions or discrimination
  • Fear of the possible impact on future performance evaluations
  • Explanations of changes in your performance

In addition, you may not know how willing your employer would be to make adjustments in job duties or deadlines. However, if your job poses any hazard for you, openness and honesty are crucial for your safety.

Employers may have noticed some change in your performance and talking about it may give them an opportunity to understand the situation and make some helpful changes.

For more information, download our Help Sheets:

 

Resources for Employment Issues:

  • The BC law firm of Blake, Cassels & Graydon generously provides pro-bono services to people with Parkinson's who have experienced employment-related difficulties associated with Parkinson's. To find out more about these services please contact: Jean Blake, CEO | 604.662.3240 | 1.800.668.3330 | Email

 

Planning for Changes in Ability and Employment

Parkinson's is different for each person and it may never progress to the point where you might have to consider giving up your work. Yet, this may become reality for some. Many of us identify closely with our jobs and careers, and giving them up can be very painful. In addition to the concern about one's financial future, deciding to leave work involves decisions relating to disability status, disability income, and taxation.

Remaining at work, as a person with a disability, may create situations where fair treatment or equal opportunity could become concerns.

When deciding to leave your employment, consider the following:

  • If you have disability benefits provided by your employer, review them carefully. Benefits paid to you can be taxable, or not taxable, depending on aspects of the plan.
  • When deciding to go on disability benefits, remember that the amount paid is based on your most recent income. Therefore, if you go on part time immediately prior to the time you claim disability benefits, the amount paid to you will be based on the part-time income.
  • Speak to your physician about obtaining a Disability Tax Credit Certificate.
  • For complete information and forms relating to income tax and disability issues see the Canada Revenue Agency.
Parkinson Society of British Columbia