I get tired of hearing the following comments from a variety of sources including: friends, family, and I have even heard some of these from misinformed medical professionals – who are unfamiliar with parkinson’s disease (but who may think they know something about it or me) .
“You can’t have parkinson’s disease because your tremor is not constant” (OR… “your tremors go away with movement”, “your tremors sometimes go away when you are distracted”, “tremors are only on one side”, “your tremors 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 tremors may be activated with certain movements. Many with Parkinson’s have tremors that may disappear with movement – in fact Parkinson’s disease starts in some with resting tremors (only occur at rest). Everyone with PD is unique, my disease may present differently than someone else who has PD. My own tremors started with a resting tremor in my right hand (which usually only occurred if my hand was resting a certain way – like on an chair arm handle, next my tremors progressed to my arm, and now I notice a tremor in my jaw. I notice that my tremors come and go (the tremors get worse with stress, are activated with certain postures, or activated by 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” – which typically involves both sides of the body, the head, and typically starts with action tremors (occurring with reaching for an object).
- ‘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 just fine earlier today, and now you are trying to look disabled – what is with that?”)
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 I was in an “on” period! Please understand that if I grab my cane or look like I am struggling – 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? If there is 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!