You just found out your Dad has Parkinson’s and the whole family is in a panic. Who do you turn to? Your doctor just wrote you a prescription for a new Parkinson’s drug. You can’t remember the side effects to watch out for. Who can fill you in? Or, you just read about a miracle cure for Parkinson’s on the Internet? How can you find out if this information is for real?
For these, and so many other questions and concerns related to living with Parkinson’s, Parkinson Canada offers Information and Referral as one of many core services available across the country. Individuals can call 1-800 – 565-3000 or contact us by email at firstname.lastname@example.org. In 2016, the organization received more than 9000 contacts for help. Sandie Jones and Robert TerSteege are two members of a Canada-wide team that includes information and referral associates and community development coordinators, who provides confidential, one-on-one service to thousands of families. And these professionals have heard it all, retaining their kind and caring interest, along with a great depth of expertise, honed over time. “We just want to help,” says Sandie.
Helping others seems to be part of their DNA. Both Sandie and Robert have always worked in the helping professions; Sandie started her career as a mental health nurse, and Robert working with people with disabilities. Long-term employees with Parkinson Canada, they have seen demand for their services grow, new treatments emerge, and an increasingly complex health and social services system grow around Parkinson’s care.
Sandie has been helping people living with Parkinson’s and their care partners for almost 20 years now. “I remember in my early nursing years when there was no treatment for Parkinson’s at all. I had an aunt that took part in the first clinical trials for Levodopa.” Her aunt had been basically immobile, and finally was able to sit up and speak, when taking Levodopa. “It reminds me of how far we have come and that there is hope for the future and I share those thoughts with clients.”
People living with Parkinson’s and their families most often need information and support when they are first diagnosed and when, or if, living at home is no longer an option. “Some people remember when Parkinson’s was such a cruel, painful and difficult disease, with no available treatment. Maybe they knew someone with the disease back then, and are terrified,” says Sandie.
You may remember what it’s like to leave the neurologist’s office after hearing the words, “You have Parkinson’s.” You likely didn’t hear anything beyond those words. After the shock subsides, you’ll want to know so much more: about symptoms and medications, other treatments, how your life will be affected; the feelings can be overwhelming. Friends and family want to know how best to support you. Whether you speak to Ryan in Atlantic Canada, Danielle in Quebec, Donna or Jennifer out west, like Robert and Sandie, they are all trained and qualified to explain things in a way that is relatable to you and your situation.
“It’s not always easy to understand or absorb information about Parkinson’s,” says Robert, whether from your doctor or in written materials. After all, we are talking about brain chemistry. It is a complex disease!”
Often callers simply feel less alone, when they can speak to someone who is empathetic, and outside of the family. “They feel validated when they learn that others are experiencing the same symptoms and feelings,” says Robert.
For instance one gentleman called because his wife insisted he do so, explains Robert. He had been experiencing depression and anxiety. When Robert spoke to him about how this is a very common symptom of the disease, and not a character flaw, he was much more receptive to talking to his doctor about getting treatment for these symptoms. Both he and his wife were much relieved.
Many people also deal with issues of employment, caregiving, insurance, taxes, or assistive devices. They may not know what sources of support are out there, as well as what programs they may be entitled to access. “By getting a clear picture of what a person needs,” says Robert, “we can often direct a person to the available services in the community, including Parkinson Canada support groups and programs.”
With the amount of information sharing available through the Internet, many people also contact Parkinson Canada about claims on complementary therapies, breakthroughs reported in the news, and other things they have discovered online. Parkinson Canada will not endorse any specific product, service or enterprise. “We take pride in sharing credible information,” says Robert. “If we do not have an answer, we will do our best to source reputable information, so that people can make informed decisions for themselves.”
Probably the toughest conversations occur when the disease has progressed. During later stages, there are fewer benefits from medications. This is the time when families may consider other treatment options, and plan for outside help or a move from home. “Care partners and the person with Parkinson’s may feel like a failure, when they can no longer cope,” say Robert and Sandie. Parkinson Canada staff can help these individuals explore their options so they can make informed decisions and suitable plans.
Tips to getting the most out of your contact with our services
No matter why you contact Parkinson Canada, there are things you can do to help us help you.
- Be honest. It can be difficult for some people to discuss what they have been taught are taboo subjects such as bodily functions or sex. But, the more honest and specific you can be about your concern or questions, the more likely you are to get a satisfactory answer.
- If you call and get a voicemail recording, do leave a message. You will get called back; often we are helping someone just like you.
- When you speak to an associate, or leave a message, try to do so from a quiet place – without background noises like other conversations, the radio or TV. Speak as slowly and clearly as you can. Do not call from a cell phone while driving in your car.
- Have paper and a pen on hand to write things down.
- If you have questions about your medications, know the name of the medication, the dosage and the times you take it.
- Be prepared to have a meaningful conversation.
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