You know something is wrong, but you don’t have a name for it.
You have all these potential diagnoses floating around in your head. In a desperate search for answers, you spend hours on the internet. But that only adds to your stress.
You can’t tackle the problem if you don’t know what it is. And so, you wait…and you wait…and you wait.
Sadly, that’s the story for far too many people living in Canada today. Currently, Canadians are often waiting anywhere from six months to over two years for a formal diagnosis of Parkinson’s disease by a specialist.
Many of you know, and if not, you can imagine how devastating lengthy wait times are – both to a person’s physical and emotional well-being. Delayed access to a diagnosis and subsequent information and treatment can lead to increased symptoms, job loss, and an inability to carry on with normal activities.. Severe depression and anxiety are also common symptoms.
Meanwhile, an early diagnosis and immediately starting someone on treatment can significantly improve quality of life for a person with Parkinson’s. It can make the difference between a person being able to do their own cooking and laundry, attend family functions, and even keep their job.
That’s why this month we’re focusing on telling stories of difficult diagnoses in Parkinson Post, online, and in our Parkinson Awareness Month campaign in the media.
The time has come for better diagnostic technologies and to push for improved access to Movement Disorder Specialists for accurate diagnosis and specialized care for people living with Parkinson’s.
As we tell these stories, we are preparing for action. Parkinson Canada is convening a series of roundtables in May and June to talk about the issue of a system of care for Parkinson’s. From there, we will have clear recommendations for the government. Learn more about this process and sign up for a report on these meetings so you can take part in our call-to-action this summer here.
With Canada experiencing among the highest rates of prevalence of Parkinson’s, the world’s fastest growing neurological disease, the time to act is now.
Thank you for reading this month’s edition. Please share your own stories of diagnosis or difficulties in accessing care in the comments to an article that you can relate to. Please add your voice to the growing chorus of Canadians calling for improved access to care.
Thanks for this wonderful post. I was five years before a diagnosis, experiencing loss of sense of smell (over five years) and various lower back and neck/upper back pain & stiffness over the same period of time, complicated by arthritis in my SI joints and neck. Since arthritis in those areas can exist without pain, the recurring and sometimes persistent pain and stiffness in my neck/right arm and hand, not necessarily responding to pain medications, was frustrating. Not until I reported problems with my handwriting in October 2019, did a February appointment with a neurologist bring me a diagnosis of Parkinson’s, and an explanation for the stiffness and slowness on my right side. After being on Sinemet since Feb 2020, my quality of life has improved dramatically.
I have Parkinson’s. I was referred to the Movement Disorder Clinic. After 2 years I received an appointment. I mentioned my neurologist and was told if I had a neurologist already I would have to change and be followed by a neurologist there. I wanted to continue with my doctor so was not able to be seen at the clinic.i was disappointed I was not able to access this resource.
My husband has Parkinson’s. When it all began about 8 years ago we noticed his shaking hands. Neither of us had any previous knowledge about this disease. About that same time I noticed his inability to concentrate. His driving became, for me, noticebly bad. Doctors tested him for dementia. Following many fainting fits he was issued with a pacemaker. Every doctor, and even nurses, we met we asked about the shaking hands. None couldn’t or wouldn’t give us answers. In 2018 he was admitted to a long-term-care home due to Alzheimer’s dementia. Staff there, casual friends and family suggested Parkinson’s. It took me nearly a year of asking doctors outright to get an official diagnosis. I feel more training to the general public is needed about what to be aware of regarding Parkinson’s.
I feel very fortunate after reading some of the above stories. In the late spring of 2019 I was having a virtual phone app with a group of physiotherapest from the EGTA Family Health Team when DR Rafilovich, a Geriatrician, began to wonder if I might have Parkinson. She referred me to a neurologist Dr Valerie Cheung who on JUne 9th of 2019 (my 47th wedding ann) confirmed that I did have PD and felt I was propably in stage 3. IN 2021 I had 10 falls (2 so far in 2022) because of my feet locking. My family Dr had put me on Prolia to help my bones stay strong and so far I have not broken anything. Just some aches and bruises. I am trying to keep exercising and need to use a walker at all times.
I do not feel that different than before my diagnosis but maybe that is because i am still somewhat in denial.
After reading some of other peoples stories I now realize I will have some challenging days ahead.