Ask the expert: Self-management in Parkinson’s

Dr. Susan Fox, Neurologist, Movement Disorders Clinic, Toronto Western Hospital and Associate Professor, Department of Medicine, Division of Neurology, University of Toronto

Dr. Susan Fox, Neurologist, Movement Disorders Clinic, Toronto Western Hospital and Associate Professor, Department of Medicine, Division of Neurology, University of Toronto

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.

15 Responses to “Ask the expert: Self-management in Parkinson’s”

  1. 1 Cathy February 22, 2013 at 9:59 pm

    I really like this report and would like to learn more. I also have spinal stenosis and fibromyalgia so I tend to give in the pain now can I build myself back

  2. 2 shirley brodersen February 23, 2013 at 2:07 pm

    I have been to Mexico for placenta stem cell treatments.The first one in March /12 and second one November/12.The first one I noticed a difference in 15 days,the second one I had to wait for 44 days.So far it is holding quite well,It isn,t perfect but much better than it was.I,m now on my 104th day since my second treatment took effect

  3. 3 Paul Mazerolle February 23, 2013 at 2:34 pm

    I agree with Dr Fox. It is your life and you have the most to gain or lose so you have to take control.

    When I go see a medical professional I bring a one page typical day of my life.
    I show a 24 hour period listing each medication, the hour taken, the on -off on periods , feel good – feel bad, sleep times, and the symptoms you have.

    I also bring a list of all my meds listing the strength of each and the date refill times to make sure I will have enough refills to make it to the next appointment. The more you write down on paper the better the appointment. It takes out the anxiety of ansering questions when your speech is impaired.

    so… don`t be scared
    be prepared

  4. 4 Parkinson Society Canada February 25, 2013 at 1:04 pm

    These are handy tips, Paul. Thank you for sharing! The ‘don’t be scared; be prepared’ is a great motto to remember!

  5. 5 Parkinson Society Canada February 25, 2013 at 1:25 pm

    So glad to hear you’re doing well. Everyone’s Parkinson’s is unique and there are a variety of treatment options depending on your stage of Parkinson’s. For more treatment information click here.

  6. 6 Debbie Idzan February 26, 2013 at 4:50 pm

    My mother (82) has Parkinson’s and every day is different-somedays she is bright and perky, other days she is confused, unstable and exhausted. My father (83) has learned how to cook, does most of the household duties and cares for my mother’s needs, including medications. As a family we try to be there for them, even though they are fiercely independent. We all encourage Mom to stay active-we organize brief social events usually tied to lunch out-which she inevitably looks forward to and engages in fully. Since her world has shrunk to a very small one-we endeavour to find ways to keep her socially, physically and mentally active. Most of all we have learned to go with the flow-half a game of scrabble is OK, a walk up to the top of the driveway is far enough, and a 1/2 visit with a friend is just fine. Self management gives the Parkinson’s patient and family a chance to take each day as it comes and still do as much as possible. It certainly requires a dedicated team though.
    Debbie Idzan

  7. 7 Isis Wisdom March 3, 2013 at 7:08 pm

    Why doesn’t the Parkinson’s Society of Canada develop a standard and free drug use diary template for all Parkinson’s patients and a symptoms experienced area for each day? That would be a tremendous help to caregivers and doctors instead of everyone just always talking about the need for each patient to keep one. It’s simple to do. You have access to enough people to double check what an ideal format for it would be for all concerned. Could you please help us out with this one? Thank you!

  8. 8 Parkinson Society Canada March 6, 2013 at 11:51 am

    Thanks for the suggestion and we’ll look into it. Everyone with Parkinson’s is unique, and we have a few tools to help manage Parkinson’s including the medication card which helps focus on the need to get medications On Time; people can list meds, dosage and appropriate time. We also have a medication info sheet that includes a checklist for folks to keep track of changes they experience so they can discuss with their doctor. I would also recommend our new resource on the non-motor guide (for patients and physicians); and it includes a non-motor questionnaire.

  9. 9 Parkinson Society Canada March 6, 2013 at 12:01 pm

    Hi Debbie, thank you for the comment. You’re right; managing Parkinson’s does call for a dedicated support team.

  10. 10 Isis Wisdom March 6, 2013 at 12:42 pm

    PSC: Thank you for all the links you share throughout all these responses. Numerous of them I did not know about and find helpful. As luck would have it, the “medication card” link goes to some marketing page for some reason. Could you please kindly re-post it? It’s the one I most want to look at to compare with the excel spreadsheet of daily medication times and symptoms I created for my father to give to doctors. Many thanks! And yes, Debbie, managing Parkinson’s certainly does take a dedicated support team and the patient’s friends to be around and helpful to socialize too. On days that a physiotherapist is not coming to the house or an event is not happening it is difficult to get my father motivated to want to self manage, to do any movement exercises or walk, voice, etc. That is the current difficulty. It helps to hear from others in the same boat! Regards all.

  11. 11 Parkinson Society Canada March 11, 2013 at 10:51 am

    Hmm… I checked the medication card link and it seems to be fine. Anyhow, here’s the url itself: Please let me know if you still can’t access it. Thanks.

  12. 12 Isis March 11, 2013 at 11:12 am

    Oh, yes, that card. I do have that already, thank you so much for posting the URL again, it is much appreciated. (I’m on a different computer today and just checked the original link again and it works from this computer, how odd)! I think for now I still have to go with my own templates for a drug use diary. I really do think that there is a comprehensive way of developing a template that could be used by many (regardless of the different symptoms), or could be individually modified if needed, with a link to download it from your site for free that would help establish a baseline from which patients and doctors can work. Let me know if you want my little templates as a starting point for mapping one out. Thank you for the work you all do and for the information you disseminate. Kind regards!

  13. 13 Parkinson Society Canada March 11, 2013 at 11:44 am

    Glad to know the link works for you now 🙂 It would be great to see your templates. Could you email them to please and I’ll forward them to our Director, Education and Services. Thanks so much for sharing them.

  14. 14 Isis Wisdom March 11, 2013 at 12:27 pm

    Yes, will do that. And thank you for pursuing it further!

  15. 15 robinleereynolds May 31, 2013 at 7:49 pm

    This is great to see, people coming together and figuring out ways to make life better for those that suffer from a mental disease such as parkinson’s. My father has the start of dementia and I know it has been difficult to get an handle on, I know its a different problem but at the same point a lot of tips I have found for various diseases work across the board. Thanks for the article and I hope to see more self-helping posts in the future.

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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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