Living with Parkinson’s disease (PD) or a movement disorder can be an ongoing, daily challenge. Fortunately, there are steps you can take to make the journey easier. Start by following these 10 tips. They will likely lead you to others.
1. Seek out a specialist
A movement disorders or PD specialist has the most up-to-date information on treatment options. A specialist can help establish a care plan for you. After it's in place, your neurologist can then follow with you. As your condition progresses, return to the specialist for the most effective treatment strategy.
2. Learn all you can about the disease
The more you know about your disease or condition, the better you will be able to cope. Information will also help you make important decisions about treatment.
There are many resources available on PD and movement disorders. Participate in a class or support group. Web sites such as the National Parkinson Foundation also are good sources of information. Be sure to share what you learn with your doctor.
3. Involve a loved one
The emotional and practical support of loved ones is essential. Educate a loved one on what to expect from the disease, and then work together to create a plan that provides you with the support you will need.
4. Be honest with your doctor
Share your experiences, desires and fears with your doctor. Nothing you say will shock him or her because your doctor is accustomed to working with people who are facing your same challenges. Your doctor can help to relieve your fears and ease your burden.
5. Care for the caregiver
Remember that caring for someone with Parkinson's Disease or a movement disorder can be demanding. Make sure the primary caregiver has a healthy balance of caregiving and self-care. There is an undeniable link between the health of the caregiver and the quality of care they are able to provide.
6. Talk with others and consider joining a support group
No one is more in tune with your situation than others with the same or a similar condition. Talking to others with PD or movement disorders can provide you with helpful information on treatments and physicians. They may also have tips for coping with what can sometimes feel like an overwhelming burden.
We offer a monthly Parkinson's support group, a safe place to share questions, concerns and feelings.
7. Watch for and treat depression
It is quite common for those with PD and movement disorders to experience depression. Too often, the subtle signs of depression are not recognized by family and friends and the individual who is feeling down doesn't get the needed treatment.
Watch for signs of depression, including:
- A persistent sad or anxious mood
- Feelings of worthlessness
- Weight change
- Feelings of hopelessness
- Reduced interest in usual activities
8. Eat right
Good nutrition is essential to your overall well-being. Consider talking to your doctor about a referral to a registered dietitian who can help review your nutritional needs.
9. Be realistic and learn to accept help
There will be times when you will need help, but that does not mean that you can't contribute. Be realistic about what you can do and what you cannot do. For example, you may not be able to cook meals every night of the week, but you can plan the meals and create the shopping list. Learn to accept help and recognize that it is a gift others want to give.
10. Ask questions
Remember, you have every right to ask questions about your health - as many and as often as you would like. A good doctor will welcome your questions and will know the answers or go to great lengths to find them. It is okay to challenge your doctor with tough questions.