What kind of help do I need? Who do I ask for that kind of help? How do I keep track of tasks and appointments and who is doing what? These are just some of the questions that caregivers need to answer – often every day. Navigating the health and social care systems can be overwhelming, especially when caring for a person with a progressive brain disease.
“At the core of this webinar is the recognition that one individual caregiver cannot possibly meet all of the needs of their loved one,” says Robert TerSteege of Parkinson Canada, one of the webinar’s presenters. “We will guide participants through the process of determining what help they need, where they may find it and how to ask for the help they need.”
TerSteege was the primary caregiver for his late fiancé for about a year, seven years ago, and is a Certified Information Referral Specialist (CIRS.) He will be joined by Valerie Borggard, Navigator for the MS Knowledge Network, to provide an overview of how care partners can navigate different systems and consider different resources to help support themselves and their loved ones.
“It can be difficult to first identify the issue you need to resolve and then to target where to find the resources you need,” says TerSteege, “Keep in mind that there are three levels of government in Canada – federal, provincial and municipal – and several departments at each level. There is not really a single system, but several systems to navigate. There are also community and charitable resources available, as well as an individual’s personal support network to call upon. This webinar should give participants some guidance on how to get the help they need.”
To join the live webinar, you need to register in advance. You’ll also need access to a computer and the Internet. Following the broadcast, the webinar will be posted on Parkinson Canada’s website so you can watch and listen at your own convenience. We will also be posting on the website some of the helpful tools introduced in the webinar, like the “Honey Do” List: for those ‘if there’s anything I can do’ moments and a chart for Planning for When I Will Need Help (appointments, drives, and other ‘no miss’ days.)
If you haven’t watched it yet, you may want to check out the previous webinar for caregivers: Taking care of yourself through the ups and downs of caregiving. Care partners can also find other information and resources on our website or by calling Parkinson Canada’s Information and Referral Centre at 1-800-565-3000.
Although Parkinson’s disease affects both men and women, women are less likely to develop the progressive neurological disorder, but more likely to experience severe motor symptoms and side effects of treatment.
At Queen’s University in Kingston, neuroscientist Emily Hawken investigates those gender differences. She’s studying the interaction between Parkinson’s disease and hormones that are intrinsic to females, such as estrogen. She wants to know how that interaction affects the transmission of chemicals in the brain. Hawken recently received a two-year, $100,000 Basic Research Fellowship from the Parkinson Canada Research Program to pursue this research.
For example, when women with Parkinson’s are treated with levodopa, the medication used to reduce the symptoms of the disease, they often develop more severe involuntary movements (dyskinesia) than men with Parkinson’s on the same medication.
“What is it about females that make them less likely to develop symptoms of Parkinson’s, yet more likely to be severely impaired by the side effects of the treatment?” she asks.
Using animal models, Hawken will transmit electrical currents through brain cells to measure the activity of those neurons in specific regions of the brain. Then she will observe and record the effect of specific neurotransmitters on the neurons she measures.
Recent evidence suggests estrogen may affect other brain chemicals, such as dopamine, and estrogen may itself become a neuromodulator that transmits information to brain cells. Hawken hopes she will observe physiological evidence that animals that develop dyskinesia experience changes in their brain cells that differ depending on the animals’ gender.
If she can pinpoint a gender difference, Hawken hopes her research will inform treatments for Parkinson’s disease that are designed differently for women and men.
“Instead of a blanket treatment … perhaps if we did tailor the treatment for women, it would be equally therapeutic, but with fewer side effects,” Hawken says.
Historically, most health research has been conducted using men and a male model of disease, Hawken points out. “We could be completely missing something just by looking at the male model,” Hawken says. “Women are suffering as a consequence, because they generally don’t present the same symptoms. Their treatments are often subpar because our knowledge base isn’t adequate in terms of how the female brain operates.”
Read about other researchers recently funded by the Parkinson Canada Research Program.
“You should have seen me back then. I’d be sitting on the tailgate of the station wagon with the youngest on my lap. My middle son would be tearing around on his tricycle and we’d be watching my eldest boy play baseball; cheering him on,” remembers Cindy Smith as she looks back on her days as the mother of three young sons, with her husband Tim away with the Navy. That was just before learning she had Parkinson’s disease, at 35 years of age.
In 1996, she’d gone to her family doctor about a jiggling finger on her left hand. She thought maybe she had a wonky muscle or tendon. She was surprised when her doctor referred her to a neurologist. The specialist said he knew by the way she walked into his office, with limited arm movement, that she had Parkinson’s disease. There is no simple blood test or other diagnostic tool to confirm a diagnosis. They did several tests, including an MRI, to rule out other possibilities.
“I was taken aback,” says Cindy. “I didn’t know much about Parkinson’s, except that it was something old people got.”
For the first year or two, Cindy didn’t take any medication and carried on as a busy Mom with a husband in the navy. She didn’t have too many symptoms at the time that affected her lifestyle. Eventually, she started taking levodopa and within four years, the family moved from Dartmouth to Hilden, close to Cindy’s family and her husband Tim got a job on land. “We knew that eventually I was going to need more help.” Her eldest son Tim says the move was not too tough on the children, since they were still quite young and had lots of cousins as built-in friends at their new school.
Aside from close family and friends, Cindy did not announce her disease to others and she didn’t have to deal with telling an employer. She and her husband did tell the children about Cindy’s diagnosis and tried not to make it sound like a big deal. But her son Tim remembers the announcement.
“I remember having a conversation in the car as we were all driving across the bridge, about the possibility of Mum having Parkinson’s, but they were going to do more tests. I think I was about eight years old. I heard the word ‘disease’ and I knew it was serious. My parents explained how it might affect her, that she might be a bit shaky. It was scary at the time,” recalls Tim.
Cindy’s disease progressed fairly slowly and son Tim agrees that their mother’s Parkinson disease did not have a huge impact on the day-to-day lives of the three boys. “It was a busy time,” says Cindy. “There were beavers, cubs and scouts; sports and school. We did it all. Everybody pitched in and Tim was no longer at sea. He is always such a great help. We just got on with life.”
She always made jokes about her tremors, says her son Tim. “She would threaten to give us haircuts herself, if we didn’t behave. And in the hardware store, she’d joke that they should hire her to mix the paint, instead of using the machine.”
Cindy did go to a Parkinson’s support group – once. She was by far the youngest person there and most of the participants were using walkers or wheelchairs and Cindy just found it frightening and depressing. (Writer’s note: Today, there are Parkinson Canada support groups especially for people with Young-onset Parkinson’s disease (YOPD.)
By the time Cindy was 50, and in her second decade living with the disease, she was finding it much more difficult to cope. She was taking pills every two hours to deal with her symptoms. “I’d have very short windows of time to do anything. I could take a shower, or hang some clothes on the line, or peel the potatoes. I would start something and then I’d have to get someone else to finish it. Some nights, I’d have to wake Tim to help me move in bed to get comfortable. I couldn’t move on my own.”
Eventually, Cindy was put on the list for a procedure called deep brain stimulation (DBS) surgery. It is brain surgery that is performed while the patient is awake; placing electrode stimulators precisely within the brain. The battery pack that sends voltage to the stimulators device is implanted in the chest (like a pacemaker). Cindy keeps her remote controller that is used to adjust the battery pack voltage going to the brain in her purse.
Cindy underwent two procedures in the spring of 2012, one for her left side, and three weeks later a second procedure to address the right side of her body. “My head was shaved and painted orange from the disinfectant,” says Cindy. “I was quite a sight. The neurosurgeon had a sense of humour and after he opened my skull, I remember him saying: ‘Well, Cindy, this is a good looking brain you’ve got here.'” Cindy continued to joke with him through the operation. “I had to keep saying my name and my address, while he was working. Sometimes I’d say a different name, or address, just to lighten things up.”
Once the stimulation device was calibrated, Cindy had a bit of a rough patch. She was still taking her medications. She tells a story of doing the “funky chicken” in a restaurant while under the combined effects of her medications and the DBS. The neurologist was thrilled, says Cindy. It meant the surgery was a success, because I was overstimulated by the combined effects of the medication and the DBS. Cindy was then able to stop taking her medications at the direction of her neurologist.
“The surgery was totally worth the risk. I had very few symptoms and took no medication for a few years.” Unfortunately, DBS does not stop the progression of the disease. Cindy now takes some medication and is dealing with other health issues, but she still feels better than before the surgery.
Cindy credits her sense of humour, the support of her family, especially her husband Tim and her three sons, as well as her church family, with her ability to cope with this complex disease. She does worry about the future, especially the possibility of dementia, which is a common symptom of Parkinson’s, especially in its later stages.
In the meantime, she is grateful for the research that has provided medications and treatments like DBS, which have improved her quality of life. She looks forward to the discovery of a cure for Parkinson’s. For now, she enjoys time with her grown sons and her grandson Morgan. As a grandmother, Cindy just laughs when her son Tim, who now has his own young son, asks her how she did it all when they were young.