This was a blog post of mine that became very popular, therefore, I decided to add it as a page on my site. This page contains some misinformed comments (and sometimes rude, mean, ignorant…etc.) spoken by others (some comments came from medical professionals who lacked specialized training in Parkinson’s Disease).
SOME MYTHS ABOUT PD:
- “You can’t have parkinson’s disease because your tremor is not constant” (OR… “your tremors go away with movement”, “go away when you are distracted” “are only on one side”, “go away when you sleep”, etc.)
Some people with PD don’t even have tremors (rigidity and slow movements are predominant). Some people with PD have tremors that are constant, while other people with PD have tremors that come and go. Most tremors occur at rest, but some tremors occur with postures, or are activated with certain movements. Some people’s tremors may disappear with movement. Everyone with PD is unique, my disease may present differently than someone else who has PD. My own tremors started with my right hand, then arm, now I notice a tremor in my jaw. I notice that my tremors come and go (like get worse with stress, activate with certain postures, or the act of simply just resting my arm – may invoke a tremor). Sometimes, for whatever reason, my tremors just disappear. People unfamiliar with parkinson’s disease may even confuse the disease with a condition called “essential tremors”.
- ‘You are too young to have PD!” (OR… “you look young and healthy”, “you are strong”, etc.)
Well, I am one of the 10% of those diagnosed under the age of 50. My muscles are fine and I do look young. I just can’t coordinate my muscles right – particularly, with fine motor movement. I also have struggles with walking at times, controlling my bladder, swallowing, etc.
- “Sometimes you look fine and other times you seem non-functional – so you must be faking it!” (OR… “I noticed that you were able to walk, talk and move fine earlier today and now you are trying to look disabled – what’s that about?”)
Those of us with PD may sometimes move better sometimes than other times – there are many factors involved that impact chemicals in our brains – such things are: medication levels, adrenaline, amount of protein eaten, time of day, and we experience periods of being “on” (when medications are working) and “off” (when medications are not at peak levels or for whatever reason the symptoms break through occur). I am not faking it when I suddenly freeze, stumble, drop an item, slur my words, choke on a large piece of food, wet my pants, or walk awkwardly. It doesn’t matter how well I looked or appeared earlier when you observed me when I was in an “on” period! Please understand that if I grab my cane or look like I am struggling to do something – I really am. It also really bothers me if you don’t believe me just because you are not experiencing what I am, and I truly hope you never have to.
- “You don’t have a relative with PD, so you can’t have the disease!”
Most people with PD don’t have relatives who have had the disease. Yet, some of us are unlucky enough to carry some genes which make it more likely for it to occur – but you don’t have to have a relative with parkinson’s disease to be afflicted.
- “What test(s) did you take that proves that you have PD? No proof? – then you don’t have it!”
There are tests which rule out other conditions, to help the doctor determine that you have parkinson’s disease. There are DAT scans to look at dopamine levels. However, at present there is not a 100% valid or reliable diagnostic test (or least that is widely available) that can tell for sure if someone has this disease – it is a clinical diagnosis. That being said, often if levodopa medication helps, that may be a good indicator – but still not 100% diagnostic. A movement disorder specialist (a neurologist with special training and/or experience with movement disorders such as parkinson’s disease is someone who can pick up on the symptoms and diagnose it accurately).
- “Why don’t you do (insert magic fix here)?… I heard it fixes or cures this disease!”
I have drank my green smoothies, taken my vitamins, exercised, and did take care of my health – yet still ended up with PD. I also continue to do what I can with diet and exercise and have found no magic cure. At present there are treatments for PD, but no known cure that arrests the disease – especially not for every person with it. I guess that I appreciate your concerns and your desire to share with me the information that you have heard that will fix me, but your magic fix will probably not stop my progressive illness. However, I do have faith that science will bring about either a way to slow, reverse, or cure this disease someday – maybe soon, so feel free to donate money to the cause and help agencies fight it and support those with it!
Since publishing my original blog post about misinformation about PD, I have heard from many others who shared horror stories of worse comments than the ones listed above, including some PWP who experienced their own doctors, employers, even close family members denying their illness, or taking cruel actions such as divorce, abandonment, etc. Some of you even had your Parkinson Disease diagnosis confirmed by several doctors, having underwent many tests, and at least one movement disorder specialist confirming it, yet were still accused of exaggerating your symptoms, lying, or just plain being crazy – how incredibly frustrating and demeaning! I heard that some of you had been told that your Parkinson’s Disease “is all in your head”. Well, tell your skeptical accusers that it is “all in my head”, because it is a very serious brain disease that is progressive and currently without cure!