Join our Parkinson’s family

Joyce Gordon, CEO, Parkinson Canada

You never have to face your Parkinson’s journey alone. While people living with Parkinson’s, and their caregivers, rely on the supportive network of family and friends, they tell me how important they find the unique support that only their Parkinson’s family can provide. That’s because they feel no one knows better the real impact of this chronic condition than others who also live with it day in and day out. And for those who are separated from family and friends by distance or circumstances, our Parkinson’s family can be a true lifeline.

As Parkinson’s disease progresses, many aspects of daily living change. Moving, eating, and talking become more difficult. The physical symptoms of Parkinson’s can feel embarrassing or uncomfortable in social settings. That can lead to withdrawal and isolation, which may lead to depression and feelings of helplessness. Your own family and friends understand your difficulties, and so does your Parkinson’s family. Few things make us better than helping another in need. We are all stronger when we overcome our challenges together.

Parkinson Canada is here for you offering help, hope and vital connections to the Parkinson community. Our first Parkinson SuperWalk National Hero Blake Bell says he has a more expanded view of family. He talks about his immediate family and then his “Parkinson’s family,” full of strong people he has connected with through support groups, activities for people with Parkinson’s, events and fundraising. Watch Blake’s story here.

Many people describe getting involved with Parkinson Canada as part of their healing and adjustment to living with the disease. Jamie Fobert became a spokesperson after a chance meeting with a member of his community. He thinks of his Parkinson’s family as part of his therapy, as life-altering as taking his medication and exercising. Hear Jamie’s story here.

Caregivers too can find connections and support with us. Former Board member Joyce Baretto enjoys her role as Parkinson Ambassador. Her mother Lena has been living with Parkinson’s for more than two decades. While Lena’s extended family supports her, Joyce advocates to elected officials and public servants to improve life for the entire Parkinson community. Watch Lena’s story here.

You can count on Parkinson Canada to help you make connections. Call our helpline for information, referrals and support. We are your hub to the Parkinson’s community across Canada and we extend a warm welcome to you and to everyone touched by this life-changing disease. We are able to provide extensive resources and supportive connections thanks to our generous supporters and donors.

Join our Parkinson’s family today. Visit our website at www.Parkinson.ca for a wealth of information and resources. Attend a Parkinson Canada support group or event in your community. Get involved and you’re sure to meet members of our Parkinson’s family. Become a volunteer or make a donation. As one of our donors told me recently, “You never lose when you give.”

New hope to halt compulsive gambling

Dr. Catharine Winstanley

For people with Parkinson’s disease, it’s usually a tremendous relief to find a drug to treat the tremors, stiffness or the freezing that causes some of them to halt in place.

But for a significant minority of people – up to 20 per cent – the class of drugs that is often most effective in controlling these motor symptoms comes with a devastating side effect. These synthetic dopamine drugs, called dopamine agonists, can introduce risky behaviour, including compulsive gambling that may cause people to drain their life-savings or ruin their relationships.

At the University of British Columbia, behavioural neuroscientist Catharine Winstanley uses animal models to investigate the link between a protein called GSK3beta, and the impulse control problems some people develop when taking these drugs.

The risky behaviours often make both doctors and people with Parkinson’s reluctant to start the synthetic dopamine drugs.

Although GSK3beta is associated with several psychiatric disorders, so far researchers don’t know its precise role in causing them.  What they do know is that certain other drugs, including lithium and new  lithium derivatives, seem to block GSK3beta, preventing the development of impulse control problems.

Winstanley and her colleagues are testing these drugs, which have already been demonstrated to be safe. They’re hoping that giving one of these drugs to people already taking dopamine agonists will prevent them from developing these impulsive behaviours. Winstanley received a $45,000 pilot project grant funded by Parkinson Society British Columbia from the Parkinson Canada Research Program for this project.

If Winstanley is successful, “it would make the experience of being treated with these compounds (dopamine agonists) a lot safer and less worrying for the patients,” she says.

People with Parkinson’s could take both the synthetic dopamine agonists and the additional medication, relieving their motor symptoms without jeopardizing their supportive relationships and livelihood.

Currently, the impulse control issues are “the worst outcome for someone who is trying to develop a new medical treatment,” says Winstanley, an associate professor at UBC. “The drug they’ve developed turns out to cause something worse than the disease they were trying to treat.”

The heart-rending effects of compulsive gambling and other impulsive behaviours compelled Winstanley to tackle this research project, she says. She empathizes with people with Parkinson’s, whose hopes are raised by the prospect of taking the dopamine agonist medication, only to have those hopes dashed when the risky behaviours emerge.

“You don’t have to look very far before you find a friend or a relative who is dealing with the fallout from Parkinson’s disease,” says Winstanley. “I just want to do the little bit I can to make that better. This is the area where I think my own research can make a difference.”

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

Caregiver tips for the holidays

The days are feeling frosty and decorations are making their way across homes and storefronts. Though the holiday season is enjoyable for many, it can be a stressful time for families affected by Alzheimer’s disease or other dementias, multiple sclerosis, or Parkinson’s disease. Unfamiliar places, large groups of people, noise, and a hectic pace can bring feelings of anxiety, fatigue, and depression.

As a caregiver, this adds to the other challenges you may be facing. For example, you may find that seasonal obligations are pulling you in multiple directions and adding to your stress level. Finding the time and energy to buy gifts, visit others, and even feel “the holiday spirit” can be difficult as the commitments pile up.

So how can you make the coming holidays a time to enjoy and connect with family and friends for you and the person living with the disease? Here are some tips that can help make the holidays more enjoyable – for everyone.

Make a simple wish list

To help you manage some of the holiday stress, try to plan as much as you can ahead of time. Creating a list of simple and straightforward goals will allow you to set realistic expectations for yourself and the person you care for, and prioritize the occasions and traditions that are most important to you and your family.

Some items to consider include:

  • Scheduling your holiday gatherings for dates and times that best suit the person with the disease.
  • Letting your family and friends know in advance about your priorities and availability.
  • Aiming for as few changes in routine as you reasonably can.
  • Ensuring that you are well-supplied for the season to avoid last-minute running around (for example, have extra medication on hand).

It’s also a good idea to make a list of doctors, walk-in clinics, and pharmacies that are open during holidays in case of an emergency.

Keep gatherings small and short

Smaller gatherings, with fewer faces to see and conversations to hear, will reduce overwhelming feelings of stress for the person living with the disease. For larger, longer gatherings, consider bringing the person to the most meaningful part of the event, and designate a quiet room where the person can retreat. Consider choosing familiar and accessible places for gatherings.

Get them involved

Have the person participate in preparations and tasks that have meaning for them. Are there any holiday activities that bring them joy, like making cards or wrapping gifts? Remember that changing abilities have not altered the person’s importance in the family or the need to be included in special activities and events.

Travelling? Have a plan

Changes in the person’s abilities can make travel challenging, but careful planning can help. If your holiday plans include travel, make as many requests as you can ahead of time, particularly with flights and accommodations. Most airlines have assistance services for those with medical conditions, and can provide special accommodations such as wheelchairs, additional legroom, and early boarding. If staying at a hotel, let the staff know about your needs and explain some of the possible difficulties you might encounter.

Long trips can be stressful for you and the person living with the disease, so plan ahead and give yourself plenty of extra time to get where you’re going. Pack a few days before you have to leave, and have a doctor’s note for any medication you carry.

Find time for yourself

Be realistic and don’t overdo it—avoiding burnout and finding respite is key to enjoying the holidays. Spread your errands around, and don’t feel afraid or guilty to ask for help. Take a look at your network—is there another family member, friend, or a neighbour whom you can ask for help? The holidays provide good opportunities to seek support from those you know. Should you be unable to find support in your personal network, remember that you’re never alone—we’re here to help!

For further reading:

Links provided are informational purposes only, and do not necessarily represent an endorsement by the Alzheimer Society of Canada, MS Society of Canada or Parkinson Canada. Always review treatment options with your own health care provider.

Parkinson’s and travelling: http://www.parkinson.ca/wp-content/uploads/Pd-and-Travelling.pdf

Tips for travelling with someone who has dementia: www.alzheimer.ca/en/Living-with-dementia/Day-to-day-living/Driving-and-transportation/Travel

Reducing caregiver stress: www.alzheimer.ca/en/Living-with-dementia/Caring-for-someone/Self-care-for-the-caregiver/Reducing-caregiver-stress

Editor’s note: The people served by Parkinson Canada, the Alzheimer Society and the Multiple Sclerosis Society of Canada, have many things in common, including  the family caregivers who provide support to people living with these respective diseases. Our organizations have partnered to share resources and provide new information and webinars to support family caregivers. This article is one of those information resources.