How (and When) to Help
If you suspect a PS or ET movement disorder
The first person to notice early symptoms of a PS or ET movement disorder is often not the one affected, but rather someone close to them, such as a spouse or child. If you suspect a movement disorder in a loved one, encourage him or her to talk to the doctor about whether a test should be given so that the right diagnosis can be made.
During daily activities
Does your loved one cherish his or her independence and want to continue to do as much as they can alone? Does your loved one want help but is reluctant to ask for it? Just as symptoms can differ from day to day, your loved one's needs may differ from one day to the next. Perhaps he or she would appreciate help on certain days but not on others. Sometimes they may need help with certain tasks only. Remember that a person with a movement disorder may move or speak more slowly. Resist the urge to jump in and complete a task or finish a sentence.
Ask your loved one for guidance. An open conversation can prevent resentment and hurt feelings on both sides.
Collect accurate medical records and keep them up to date. In addition, make a list of all drugs your loved one takes, a schedule of when they take them, and set up calendar reminders for when they will need to be refilled. You'll want to share all this with your loved one's doctor.
At the doctor's office
This is an important time to be an advocate for your loved one. Just accompanying them to a doctor's appointment is a gesture of emotional support. The following are some tips to help you:
- Let them speak. Unless your loved one is having physical difficulty speaking, don't interrupt or speak for them. It's important that your loved one is able to speak openly to the doctor.
- Take notes during the appointment. This will allow your loved one to speak freely and will ensure that you have recorded the next steps accurately.
- Make your loved one comfortable. You should also make sure that they are not too hot or cold, and that they have a comfortable seat.
- Ask questions about your role. Ask the doctor about small changes you can make to help your loved one live better. Talk to the doctor about changes in diet and exercise that can help make a difference.
Another way to get involved
Clinical research is a critical step toward better therapies and a cure, and it can only happen with your help. You and your loved one may want to volunteer to participate in a clinical trial, and there are many options offered through private foundations and government research facilities.
An important aspect of health, both physical and emotional, for people with movement disorders is to engage in some form of physical activity. You can encourage your loved one to get moving—or better yet, you can move together.
Next: Moving With Your Loved One