Carenity members share about their Parkinson's disease diagnosis experience
Published Oct 7, 2019 • Updated Oct 8, 2019 • By Lee Ruiz
Carenity members affected by Parkinson's disease have graciously told us about their journey with their Parkinson's diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis.
Carenity survey of 134 patients in the Carenity platform.
On average, patients waited 3 years and 4 months to be diagnosed and consulted with 4 doctors before reaching their diagnosis.
Unfortunately, for those suffering from Parkinson's disease, the time period to arrive at a diagnosis ranged between 1 - 15 years from the initial onset of symptoms, and a majority of respondents consulted with 2 or more doctors prior to receiving their diagnosis.
Before the diagnosis: the impact of Parkinson's disease
We asked our members about the impacts the symptoms caused by Parkinson's had on their daily life before reaching a diagnosis, and this is what they had to say:
Chronic fatigue- 54%
Professional life - 54%
Hobbies and activities - 49%
Social life - 45%
Personal life - 38%
Family life - 37%
Chronic pain - 33%
Other - 10%
The majority of respondents reported that chronic fatigue had the greatest impact on their daily life before the diagnosis. Fortunately, 28% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis. Members in general felt that the symptoms impacted their family life, and other areas of their life not listed in the survey, the least.
Before diagnosis, only 44% of patients did their own research on the internet concerning their symptoms.
Many respondents didn’t try any alternative therapies for their Parkinson's disease, such as homeopathy, with only 20% responding that they did.
Being diagnosed with Parkinson's disease: what you had to say
For many conditions, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. However, with Parkinson's disease, only 29% of patients reported having had a misdiagnosis before being diagnosed with Parkinson's.
The shock of the diagnosis
How did patients react to their diagnosis?
It was brutal - 47%
It wasn’t a shock, I was expecting it - 34%
It was a relief - 20%
It was horrifying - 19%
I didn’t feel anything in particular - 14%
I do not remember - 3%
Finding out that you have Parkinson's disease can be a frightening event, but 14% said they did not experience any particular sentiment, while 3% of patients can’t remember how they felt at all.
The role of doctors and healthcare professionals
The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took time in discussing with them their Parkinson's diagnosis while also being calm and emphatic. The main problem members felt with their medical care was the feeling that the practitioner rushed through giving the diagnosis and that the practitioner didn’t care when delivering the diagnosis.
Some comments from respondents said that they appreciated that their doctor was "straight forward" while another described the delivery as being “blunt”. Two respondents claimed their doctor pressured them to admit they drink alcohol, when that certainly was not the case.
Fortunately, over all, the majority of respondents had positive feedback regarding their medical care and doctor, with most of them being encouraged to lose weight and make lifestyle changes.
43% - The doctor took the time to explain
42% - The doctor was calm
25% - The doctor was very emphatic
12% - The doctor offered offered psychological support
25% - The doctor was cold and distant e
22% - The doctor rushed through explaning the diagnosis
13% - The doctor did not care
07% - The doctor only used scientific language when explaning the diagnosis
The patient's struggle when facing Parkinson's disease...
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now that they had a name for their symptoms/condition, or whether they felt despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:
28% of patients felt relieved by the diagnosis, but this was coupled with 40% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 23% of respondents.
28% reported feeling lost, confused and alone; 21% felt anger about their diagnosis; 16% of patients felt they were being misunderstood; 23% felt discouraged.
Unfortunately, only 39% felt determined to fight the disease, and only 13% had confidence for the future, while 16% felt despair.
How can diagnosing Parkinson's disease be improved?
The above statistics about how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of Parkinson's. We asked our members how they felt the process could be improved and a lot of respondents said they would have appreciated more time with the doctors and specialists.
The most resounding suggestion in improving the journey with a diagnosis of Parkinson's disease is to simply provide the patient with more information about the diagnosis, what they can expect going forward, and how to manage it and for the practitioners to do so by taking more time with the patient.
"[The diagnosis] is a life changer we would have appreciated more time with the Nuerologist."
"The doctor treated me very quickly and he did not explain to me how the disease develops or what the disease is. I was lost and left not knowing anything about the condition."
"The neurologist should be more kind. They should give the diagnosis in detail and do so with empathy, explaning the disease and solutions to control and establish the patient."
Patients feel that their doctor should spend more time explaining to them what Parkinson's means and how they can manage the disease and to do so in an understanding, non-rushed manner. Many members shared how they really had no idea what was going on or what the condition was after receiving the diagnosis from the practitioner.
Members want more detailed information and support from their healthcare providers, so that they don’t feel lost, discouraged, and alone going forward.
And what is your story?
Share your experiences and those of loved ones in the comments below to discuss how to improve Parkinson's diagnosis and cure the disease!