Ask the expert: Self-management in Parkinson’s

Parkinson Society Canada recently spoke with Dr. Susan Fox, a neurologist, and asked her a series of questions on self-management of Parkinson’s disease. Dr. Fox shares her expertise, below, and gives some tips for people with Parkinson’s looking to self-manage their condition.

How would you define self-management in Parkinson’s?

I think it is the concept of having patients take on some of the active management of Parkinson’s disease themselves rather than letting it control them; so it involves people managing their day-to-day schedule and lifestyle better as a way of trying to minimize the impact of Parkinson’s on what they want to do. I certainly encourage it with my patients all the time but I’m not certain I would put a label to it.

What might be a better way of talking about it?

I think self-management is a good term to use. It’s a matter of getting patients to be more proactive in improving their symptoms by doing things like getting more sleep, eating regularly a good healthy diet, taking their tablets on time and, particularly, exercising. Self-management is also about having a positive attitude – seeing the glass as half-full rather than half-empty.

Has it been shown to make a difference?

It’s almost impossible to measure because it’s so subjective. It would be interesting to research or audit but I’m not aware that anyone has done controlled clinical trials.

So, what are the perceived benefits for the person with Parkinson’s?

Anxiety is often a big component of the disease. Parkinson’s brings on many changes, but when people learn to keep their life more structured by managing the disease better themselves, they begin to feel more confident. This often reduces anxiety and enables people to feel better overall. It also takes some of the pressure off the family when the person with Parkinson’s is proactive in trying to cope with this chronic disease.

What is the physician’s role?

I play a reinforcement role. I emphasize that regular sleep, good quality food and exercise are extremely important when people have a chronic neurological disease that affects their motor function. Reminding patients about this each time they come to the clinic helps keep the message forefront in the mind. However, there will be some aspects that I can’t help patients resolve, such as changes in their home environment or developing a social support network. They will have to take on some of those responsibilities themselves.

Are there any risks to self-management?

In self-managing their medications, some people may take a higher dose than they should or may not stick to the recommended timing which can put people with Parkinson’s at risk of developing serious problems, but that’s a minority of people. Generally there aren’t any risks.

Who is likely to have the greatest difficulty with self-management?

Self-management will be more of a challenge for people who live alone, who don’t have close family or friends, who are fairly disabled or living in care or residential homes.

Having good social support is key to enabling people to feel that they can try to manage aspects of Parkinson’s beyond medication and medical intervention. When you have good support it is much easier to do that.

Is self-management discussed in the new Canadian Guidelines on Parkinson’s Disease?

The Canadian Guidelines on Parkinson’s Disease has a section on communication where it discusses the doctor-patient relationship, but self-management isn’t there as a specific category on its own. There will be revisions to the Guidelines, at some point in the future, so this could be something that we take a look at.

Building social support

Dr. Fox suggests:

  • Look to a variety of health care professionals.
  • Seek out helpful resources, such as groups that provide exercise therapy. Make an effort to join them and participate on a regular basis.
  • Join a support group. It is an excellent way to help yourself and help other people with Parkinson’s.
  • Enlist family members to keep you on track. They can reinforce the messages from the doctor and health care professionals.