I don’t know what to say

difficult conversationsYour husband “performs” well when his adult children visit and at testing appointments with his doctor, but you know it’s a different story when it’s just the two of you at home. What can you do to get the help you and he both truly need?

What should you do when your parent with dementia doesn’t remember previous discussions about decisions about their care? And how do you even have difficult conversations with a parent when you live on the other side of the country?

These are just some of the complicated issues that were addressed during the question and answer portion of the caregiver webinar entitled: “I don’t know what to say”… Beginning difficult conversations. The webinar was presented last month in collaboration by Alzheimer Society Canada, Parkinson Canada and Multiple Sclerosis Society of Canada. Social workers Elaine Book and Amy Freeman made the presentation, with social worker Theresa Jiwa joining the panel for discussion afterwards. This is the third in a series of webinars especially for caregivers. You can access other webinars and podcasts here.

We all want to develop deeper connections with the people who are important to us. The webinar begins with this statement and explains the attitudes, processes and strategies that can help you achieve a meaningful connection, especially when relating to loved ones with neurological conditions.

A difficult conversation usually means the issue is emotionally charged and we are reluctant to talk about it. We may not want to talk about it, but we must. Feelings of dread and fear can cause anxiety and sleeplessness. And, anticipation of the conversation is often worse than the reality.

Shift your attitude about the conversation. Having the discussion shows you care. Approach your loved one to discover what matters to them, rather than what is the matter with them. Consider how you would like to be approached about the same topic. And do a little homework. Ask others how they have conducted similar conversations and what worked for them. In addition, have the facts available to present options, not decisions, to them. You can even bring notes to the discussion.

The presenters suggest “setting the stage” for the conversation. Set up an appointment, with a date, time and time limit, in advance, and tell them what you’d like to discuss. Only address one issue at a time.  Set up an enjoyable activity, like an outing to a coffee shop, for after the conversation.

Pay attention to your tone. Speak calmly and avoid judgements. For instance, if you are concerned about a parent’s nutrition, instead of saying “Dad, there’s nothing in your fridge!” Try, “I notice there’s not much in your fridge. How are you getting your groceries and preparing meals?” This may be a better way to then explore solutions to the situation – together.

The webinar addresses six challenging topics that caregivers frequently need to address, including:

  • Sharing the diagnosis
  • Recognizing and sharing changes with health care professionals
  • Accepting help
  • Concerns about driving
  • Intimacy
  • Advance care planning.

Elaine Book and Amy Freeman offer strategies and advice for talking about each of these challenging topics. For instance, accepting help is not a sign of weakness; it takes strength. You cannot go it alone, you need help to manage. Try to focus on positives, what is gained, not lost. Reframe accepting help as a way to maintain independence, not take it away.

When someone is reluctant to accept help, listen to their concerns and don’t try to change their mind. Instead, plant seeds with possible solutions and go slowly, taking small steps, one at a time. It does require patience. Another option is to have your family member’s doctor suggest assistance as part of the person’s health care plan, and even write a prescription for specific assistance.

And if you are the person able to help, make the offer, and be specific. For instance, an adult child may offer to spend time with their mother or father, who has a neurological condition, because of concern about the caregiving parent. Make the offer, for example, by saying you want to spend time with that parent, for two or three hours each Sunday afternoon, not because the primary caregiver needs a break.

Underlying all of these difficult conversations are the emotions of loss and grief, for the loss or changing of the relationship and the feelings of sadness, anger, fear and guilt that accompany a loss. The webinar offers advice on how caregivers can deal with these emotions. A quote from caregiver guru Rosemary Parse, provides a guiding light: “Quality of life is not what those outside the life looking in think it is, but rather it is what the person living the life says it is.”

Each person’s journey with a neurological condition is as distinct as they are; so is your journey as a caregiver. Above all, the webinar presenters urge caregivers to be kind to themselves.

So, what about the husband who performs well on tests that we mentioned at the beginning of this article. Know that most physicians consider facts beyond the test results and will usually ask for family input too. And, you are certainly within your rights to ask for your own appointment with the doctor to share your concerns and observations. Social workers can also meet with caregivers and adult children to discuss concerns, strategies and solutions.

If you are connecting from a distance, technology can help. Try Skype or other video/phone options. It’s not quite like being there, but at least you can respond to visual cues. You can also consult by phone with your loved one’s health care professionals, including social workers.

At the close of the webinar, you’ll find a number of other resources to help you begin difficult discussions. Know that you are not alone. Parkinson Canada staff are ready to help you. Call our Information and Referral Helpline at 1-800-565-300 or email your questions to info@parkinson.ca.

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Repairing the transportation system within our brain cells

Stefano Cataldi

Within every brain cell, proteins are constantly moving from one compartment to another. As new proteins are produced, others are degraded or recycled – an internal traffic system designed to keep the neurons healthy and ensure the body functions properly.

If one or more proteins within those cells malfunction, however, the whole system can break down. Researchers theorize that in Parkinson’s disease, an accumulation of proteins that don’t get cleared away, such as clumps of alpha-synuclein, can cause dopamine-producing brain cells to die and lead to the movement disorder.

At the University of British Columbia, graduate student Stefano Cataldi is studying a particular protein, called VPS35. He believes VPS35 is involved in regulating this cellular traffic flow. He’s trying to identify the specific role that the protein plays in the process. Cataldi received a Quebec Research Fund on Parkinson and Parkinson Society British Columbia, two-year, $30,000 graduate student award from the Parkinson Canada Research Program to pursue this research.

Cataldi, a neuroscientist, is using mouse models of Parkinson’s disease to observe the way that mutated forms of VPS35, or mouse models where the gene is absent, affect movement and the symptoms of the neurodegenerative disease.

“We want to know why, when this protein is altered, you have these malfunctions, and what that means in the mouse behavior,” Cataldi says.

If he can determine whether VPS35 is working more or less than it should be during the protein transportation process, Cataldi believes the protein might become a drug target that could either slow down or speed up the traffic jam taking place within affected brain cells.

Unclogging that traffic jam early in the process of neurodegeneration, before the symptoms of Parkinson’s are advanced, could preserve neurons and prevent the progression of the disease, Cataldi says.

“The neuron is still alive, so we could still fix the problem before it dies,” he says.

Cataldi, whose background is as a pharmacologist, began studying Parkinson’s disease at the University of Ferrara in his native Italy. When he moved to Vancouver to complete his PhD at UBC, Cataldi also began volunteering in the Parkinson community. That fueled his passion to continue his research into the causes of this disease.

“Parkinson’s patients don’t give up. They are singing and exercising and dancing and doing whatever they can to beat this disease,” Cataldi says. “When they come to you as a scientist, they actually thank you for what you’re doing. I think they are amazing people.”

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

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Your Will, your wishes: November is Make A Will Month

Have you ever dropped a pebble into a pond? When the stone hits the surface of the water, you see ripple after ripple spreading out from the point of impact. Did you know that your legacy could be like that? Properly prepared, your Will can create a ripple effect of goodness and generosity to the people and charitable organizations you care about. A carefully written Will ensures that your assets can be distributed according to your wishes, after your death. You can ensure family members can afford the costs of higher education. You can also leave something to the charities you have respected and supported financially — a charity like Parkinson Canada.

The possibilities are endless, and to make these good things happen, you must complete your Will, sign it and have it witnessed. By taking the time now to consider your wishes and write them down, you provide such an important planning tool for the financial security of those you care about. Financial advisors and estate lawyers recommend that everyone should have a Will. Age is not a factor in determining when is the best time to prepare your Will, or update the one you already have. If you have assets, a Will is essential.

When you don’t have an up-to-date Will, you lose control of what happens to your assets. Gifts to specific individuals or to charitable organizations will not occur. Your estate will be divided according to a rigid provincial formula and may go to close relatives who may not need the money or, worse, for whom you have little connection or bond.

Your Will is a vital document to have for the above reasons and more.

Making a gift to charity in your Will, is:

  • Convenient. It can be made regardless of your age and for any amount.
  • Cost effective. Your present income will not decrease.
  • Simple. It is easy to arrange. Simply instruct your lawyer to include a gift to Parkinson Canada in your Will. It can be a specific amount, a percentage of your estate, or the remainder of your estate (a gift after debts have been paid and other gifts have been distributed.)
  • And, provides tax relief. Your estate will receive a charitable tax receipt, which can be used to reduce taxes on your final tax return and, in some cases, the previous year’s tax return.

A gift to Parkinson Canada in your Will:

  • Helps people with Parkinson’s. Your gift becomes the gift of education and support services, and enables Parkinson Canada to advocate on behalf of Canadians living with Parkinson’s.
  • Is an investment in a cure: Your gift provides funding for innovative research, expanding our knowledge about symptoms, diagnosis and treatments for Parkinson’s disease, and ultimately brings us closer to a cure.

If leaving a gift in your Will to Parkinson Canada is something you would like to consider, please contact Sue Rosenblat at 1-800-565-3000 ext. 3386, or PlannedGiving@parkinson.ca to explore your options in confidence.

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Parkinson Canada researchers passionate about improving lives today and aiming for a cure tomorrow

PhD candidate Anita Abeyesekera is investigating how people with Parkinson’s hear their own voice in order to better understand the factors involved in the speech disorder associated with the disease.

Clinician scientist Dr. Michael Schlossmacher and PhD candidate Anita Abeyesekera are both working to improve the lives of people living with Parkinson’s and add to our knowledge towards an intervention that will one day allow us to stop it. Whether they are established experts, or just beginning their careers, Parkinson’s researchers count on funding from the Parkinson Canada Research Program to test new theories leading to larger studies and to discover a critical piece of the complex puzzle that is Parkinson’s disease.

At the Ottawa Hospital and the University of Ottawa, Dr. Schlossmacher and his colleagues are testing the five elements of his new PREDIGT Score tool, which could be used to determine which healthy adults are most likely to develop Parkinson’s disease in later years. The five elements include: PD-specific genetic factors; exposure to environmental factors; interactions between the two that initiate long lasting tissue changes; gender; and the passage of time.

A $45,000, one-year, pilot project grant from the Parkinson Canada Research Program will enable him and co-investigators Dr. Tiago Mestre and Dr. Doug Manuel, to validate the PREDIGT Score, which has the potential to be used in larger clinical trials.

“Validating the PREDIGT Score would be transformative in several ways,” says Schlossmacher. “Accurately predicting PD based on an easy-to-calculate score would help us to identify at-risk persons and focus more on those factors that predispose people to the illness with the intention to try to modify them. In turn, this information could help direct future trials that seek to prevent the illness. Ultimately, we envision helping doctors and nurses identify, counsel and care for at-risk individuals with appropriate interventions.”

Dr. Michael Schlossmacher is validating elements of his new PREDIGT Score tool, which could be used to determine who is likely to develop Parkinson’s disease in the future.

At Western University in London, Anita Abeyesekera’s research could lead to new treatments for individuals experiencing speech disorders associated with Parkinson’s. Low speech intensity, also known as hypophonia, is the most common speech symptom experienced by individuals with Parkinson’s disease. She will be investigating whether the speech disorder is associated with the abnormal processing of what an individual hears into the creation of their speech (called sensorimotor integration deficit.) She will alter participants’ speech and analyze their response to the feedback to determine how this contributes to low speech intensity and other symptoms.

A $30,000, two-year, graduate student award from the Parkinson Canada Research Program enables Abeyesekera to pursue her research, which will contribute to our understanding of Parkinson’s disease, particularly the importance of sensory systems in speech disorders. Proving her theory could lead to new treatments to improve the speech, and quality of life, of people living with Parkinson’s.

“That’s what we’re passionate about as researchers,” says Abeyesekera, “improving treatments for the immediate benefit of individuals living with chronic disease and in time finding a cure.”

Parkinson Canada has great expectations for the 25 researchers receiving new grant, fellowship and student awards during the next two years. Each of them will advance our knowledge of Parkinson’s, a complex brain disease, as well as interpret and share their knowledge with other researchers and health professionals. Those receiving clinical fellowships will also treat individuals living with Parkinson’s. Many of these researchers will continue their connection with Canada’s Parkinson’s community

As of September 2017, Parkinson Canada is proud to support 25 new grants, fellowships and student awards*. These represent a total of $1,323,369 to support new research projects in Canada during the next two years. Including the eight research awards in their second year, and the 25 new projects, the Parkinson Canada Research Program will invest $1,643,369.

New awards include:

  • 10 Pilot Project Grants
  • 3 New Investigator Awards
  • 3 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 7 Graduate Student Awards

The Parkinson Canada Research Program has funded 528 research projects, totaling more than $27 million, since 1981.

*A detailed list of the 2017-2019 researchers, their project titles, affiliations and funding amounts can be found at www.parkinson.ca.

Parkinson Canada is the largest, non-government funder of Parkinson’s research in Canada. Donors fuel investment in science that explores most aspects of the disease, including: causes, complications, cognitive impairment, biomarkers, neuroprotection and quality of life.

About the Parkinson Canada Research Program

Since 1981, the Parkinson Canada Research Program has invested more than $27 million in research that has expanded our knowledge of Parkinson’s disease. The program invests in:

  • High-quality, innovative Canadian research by established and promising investigators.
  • Discovery-stage research where investigators test new theories and pursue promising new leads.
  • Researchers at the beginning of their careers in order to foster the next generation of Parkinson’s scientists.
  • Novel research to build greater capacity, promote creativity and engage more researchers.
  • Specialist training for clinicians to build capacity in high quality care for people with Parkinson’s.

The Parkinson Canada Research Program explores related disorders including: Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and other Parkinson’s conditions and the impact these diseases have on society.

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Understanding how Parkinson’s spreads through the brain

Abid Oueslati, Assistant Professor

Abid Oueslati’s fascination with the brain began as part of his initial experiences with scientific research in France. Later, while pursuing post-doctoral studies in Switzerland, he began to tackle Parkinson’s disease as a bio-molecular puzzle whose solution could improve the lives of patients around the world.

One molecule in particular captured his imagination: the intricate protein known as α-synuclein, which can spread through the brains of Parkinson’s disease patients as the ailment develops. For Oueslati, who is now an assistant professor in molecular medicine at Laval University, this behaviour closely resembles that of another problematic protein, the notorious prion.

Scientists first identified prions about 20 years ago in the search for the causes of mysterious plaques that formed in the brain and broke down its network of connections, leaving an affected person or animal increasingly disabled. The culprit turned out to be these strange proteins whose molecular structures are folded in awkward patterns and move between brain cells to disrupt healthy tissue. Oueslati has seen a similar pattern to the way α-synuclein affects the brain.

“It makes plain the progress of the disease,” he says. “It’s opening up a new area of research into Parkinson’s disease because it shows a new mechanism. It also offers new opportunities for new therapies — stopping or at least reducing the disease progress.”

Parkinson Canada is supporting Oueslati’s work, which he regards as the initial building block that will help him establish an ongoing research program in this field. He received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award, from the Parkinson Canada Research Program.

“This is a tremendous help to jump-start this project,” he explains. “We’ll be able to collect data and publish the first conception of what we want to do.”

Among the most significant developments he anticipates will be a far more effective laboratory procedure for studying Parkinson’s disease in mice. Researchers currently try to mimic the condition by adding excessive amounts of α-synuclein into the brains of these animals, but the technique yields haphazard results. By applying a model of prion-like propagation, however, Oueslati has been able to use viruses to deliver the protein into the brain in a way that more closely resembles the advance of Parkinson’s.

“The problem today is one of reproducibility,” he explains. “Our purpose is to develop an accurate, simple, and controllable model.”

He is also taking stem cell samples from Parkinson’s patients and growing them in culture to learn more about genetic features that might be responsible for the condition in the first place.

“This is a new field,” Oueslati notes, “which could show the vulnerability of these cells to some kind of external event that leads to Parkinson’s.”

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

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