Article written by Jackie Hunt Christensen.
Getting past the distress of those three words, "You have Parkinson's" can be tough. At this point, you may be saying to yourself, "I am not sure if I can handle all the challenges I am facing."
In addition to getting the best medical care possible, living well with Parkinson's is also going to require finding and getting the support you need — in other areas of your life. Remember, support does not have to come solely from a spouse, or even a family member, but can be found with anyone who is willing to lend a hand.
Support should play a key role in your Parkinson's care plan
Trying to "go it alone" when you have Parkinson's disease is like trying to find your way out of the woods without a compass. It's a frightening experience. Even in the very early stages of the disease, when your symptoms may be subtle and go unnoticed, having a strong support network will be extremely helpful in getting you the care you need and helping you live life to the fullest.
But before you ask for help, take some time to think about your needs—both emotional and practical. Once you've sorted them out, you can go about recruiting close friends, neighbors and relatives who may be willing to help.
Although confiding in others is a good idea, expecting more of people than is reasonable will not be helpful. If you rely on one or two people for both emotional support (such assharing your hopes and fears) and practical assistance (such as researching treatment options and providing transportation) you do not have a support system. What you have is one person who is going to feel tremendous pressure and suffer burnout.
A better approach: cultivate social ties that will allow you to call upon a variety of trustworthy people for different reasons, at different times. That way, you give yourself more options while lightening the load carried by those closest to you.
Here are some ways to get the support you need
Some people newly diagnosed with Parkinson's disease avoid participating in support groups because they do not want to come face to face with what they fear will be their future. But the truth is, when you are part of a supportive group, you are the one who benefits because you are freeing yourself to get the information, encouragement and emotional reinforcement you need. And seeing people who have handled Parkinson-related problems with success is a good way to build up your own confidence.
To find a Parkinson's disease support group in your area, check with your physician or area hospital or contact NPF's national Helpline (1-800-4PD-INFO). Seek out groups organized by age or stage of disease. Chances are you will have more in common with these people.
Start where you are
If you are single or live alone, building a support system may seem daunting at first, so just take one step at a time. What you want to do is develop close relationships—online, in your neighborhood and in the community. You can join a church or congregation and start attending support group meetings. These are good opportunities to connect with people who may become friends, helpers, confidantes, and in some cases, even life partners. If you live in a rural area, or have limited mobility, you may benefit from online support forums.
Map out a plan
Keep in mind that your support system will continue to evolve over time to meet your changing needs. Regardless of how big or small your circle of support is at any given time, there are certain needs that will always have to be met. Creating a list of people you can count on day in and day out can be very useful to you as well as those involved in your care. For instance, chart out who you will call when you need a ride somewhere, if you have questions about Parkinson's, or you just need someone to listen to your concerns. Keep this list by your telephone and enter the names into your cell phone.
Members of your support system may include:
- Spouse/ life partner/boyfriend/girlfriend
- Parents and in-laws
- Adult children
- Close friends
- Minister, priest, rabbi, imam
- People from your place of worship
- Other people with Parkinson's disease
- Support group members
- Social worker
- Mental health professional