Updated: Apr 24, 2019
Has anyone ever said something to you, and you know they meant well but... it just didn't set right with you? Or you have said something to someone then immediately thought, "Oops, maybe I shouldn't have put it quite that way?"
I got the idea of this post one evening when my wife and I were having dinner with a fellow Parkie and her husband. Of course we talked a lot about our common symptoms, DBS (both of us have have had the surgery), and a number of other topics. One thing that came up was when my fellow Parkie mentioned a phrase that has been said to her that really... well, bent her out-of-shape. And that caused me to think about and reflect on some of those same or similar things that people have said to me that just didn't seem to be appropriate (in other words, it caused me great annoyance and displeasure!)
So I thought I would relate to the folks out there some of the 'annoying' things that are commonly said to a Parkinson's patient. Now, I am not doing this to make anyone feel bad, as I am sure all of us - even myself - has said things to other folks, PD or otherwise, that we regret later on. But instead, consider this a tutorial on 'good manners' when you are around your Parkie friends!
Therefore, in no particular order, here are just a few of the things one should never say to a Parkie:
I know people who have died from Parkinson's
This is one of those things that you should NEVER say directly to a Parkie! Both my friend and I get really upset when this phrase is uttered. Why? Well, first of all, no one ever dies directly FROM Parkinson - rather one may die from the effects of Parkinson's. For instance, one of the most common ailments that happen in advanced Parkinson patients is pneumonia. As Parkinson's advances, a lot of patients lose their ability to swallow things as well as they did before; hence food and liquids may get into the lungs more easily and cause pneumonia. But again, this is a result of the complications of Parkinson's, NOT Parkinson's disease itself. Yes, I know that is a fine line to tread, but it is different.
And as we all know, there are a LOT of other things out in this world that can take us out, even before the effects of Parkinson's does... Not to be morbid, but going out and driving on the streets this days is putting yourself at risk (with all the lunatic drivers); so just because we have PD doesn't mean we may die due to it!
Finally, just saying this phrase reminds your Parkie friend of things that might happen in the future; and most of us are not thinking so much about what we will be like later in life, but rather trying to live day by day and and concentrating on the 'now'. So reminding us of a possible end is just not the thing to say.
I know how you feel - my <insert relative name here> had/has Parkinson's!
Now I know that it is human nature to try to feel for others and, as someone once infamously said "...I feel your pain..." - but no, you do NOT know how I feel!! If you don't have Parkinson's then you cannot have any idea how that person really feels! What this does in actuality is minimize the other person's experience with the disease. In addition, I have continually said in these blog postings the common Parkie phrase, "If you've seen one Parkinson's patient, you've seen ONE Parkinson's patient." This is because every PD patient is different - different symptoms, different effect from those symptoms, different speed of progression, etc. Every patient is unique - therefore it is impossible for anyone to know what someone else is going through. So instead, always remember that the Parkie you are talking to is different than any other Parkie out there! Rather, be sympathetic to them and their symptoms, maybe asking instead if you can help them out with something.
Related to above: I know <so-and-so> can do <this-or-that> and you can't?
This one really steams me up! And it's somewhat related to the above phrase. Yeah, maybe someone else you know with PD can do something that I may not be able to do, but again, all patients are different! Saying something like this just makes us feel 'small' and a failure (since we can't do something that someone else can!) Rather, if you see your Parkie friend struggling with something, ask if you can help them - this goes a lot farther than asking them why they can't do it!!
I thought all PD patients had tremor - but you don't have any tremor?
Yes, I do not have any tremor - and I don't know how many folks whom I've told I have Parkinson's say something like, "But you don't have any tremor? Are you sure it's Parkinson's??" Yes, unfortunately, I am sure; and just because so-and-so has tremor doesn't mean all of us do! In fact, about 15-30% of Parkinson patients never develop tremor! Remember that common Parkie phrase again - we are all different. Each of us experiences the disease differently - some have tremor; others have rigidity; some have gait and balance problems; and some have all of these! So try not to generalize all Parkinson's patients with a certain symptom, such as tremor; rather, educate yourself on the disease and it's effects.
Don't feel so bad, at least you don't have cancer!
For the most part, I know that people who have said this to me mean well - so I don't have a really big problem with it. Most of the time one says this because they are trying to get the person feeling better emotionally. But it also conveys a sort of 'cheapening' attitude, like one is saying "Oh it's really not THAT bad!" And it minimizes the pain and suffering that the person may be going through.
That's because, although Parkinson’s mostly affects our motor skills, it can - and most often does - also affect our "inner" self; mood, emotions, compulsions, etc. And sometimes those can be as bad or worse than the loss of motor skills! For instance, I read that close to 60% of Parkies experience some form of depression at some point during their time with the disease - and that kind of inner turmoil can make life with PD even more difficult.
In my case, a lot of the time you may see me when I am at my best (or at least the best I can be) due to my meds being fully on, my DBS working well, etc. You usually don't see me during those times when the meds aren't working or I've had only a couple of hours sleep that night due to stiffness or simply as a side effect of the Parkinson's. So although I may not have what you consider a worse disease, I fight this monster every day, 24/7, and it is a struggle.
You don't look like you have Parkinson's...
This is very much related to the previous statement of "... at least you don't have this-or-that disease ...". And again, I know that people mean well when this is uttered... they're basically saying "You look normal today!" But a lot of Parkies don't take it that way. I may be smiling and laughing a bit but at the same time I am so exhausted from lack of sleep that I can barely keep that conversation together. Or I might be sitting down looking fine and even joining in on the conversation - but underneath it I am so stiff (maybe because my meds haven't kicked on yet) that I dread having to get up and move about!
Here is a good illustration from "myParkinsonsteam" that I found is a perfect description of what you see and DON'T see in Parkinson's:
Pretty strong image, huh? Parkinson's doesn't take a break - it is a chronic, degenerative disease that does it's ugly work 24 hours a day, 7 days a week. Unfortunately, the symptoms of the disease will only get worse over time - it will never get better (until that cure comes along!). By saying this you are reducing Parkinson's to just the outward appearance of the disease and not realizing the inner turmoil and feelings your Parkie friend may be having! So instead of uttering this phrase, you can just let them know that you appreciate all the things they may be going through.
At least there’s medication for it.
Well, yeah there is... but a lot of time this is uttered with that "Well, it's really not that bad then" type of attitude - and that is what most Parkies dislike about this phrase! Remember that Parkinson's has NO CURE - all the medication we take basically just masks our symptoms for a little while - then they return again. Yes I am glad that we have these meds to take so that we can try to live a somewhat normal life, but these meds won't stop or slow down the disease!
Why are you using the handicap parking place? You don't look handicapped!!
I may not have heard this with my ears much; but let me tell you I have heard it loud and clear from other people's eyes or facial expression. In fact, I felt so affected by this phrase that I wrote a previous blog entry on this subject! So I won't go into all the detail that's in there, but rather remind everyone that just because someone parking in a handicap spot doesn't have a wheelchair or walk with a limp, that doesn't mean that they are taking advantage of the privilege of using that space! So try to be sympathetic to that person and assume they are using it for a valid reason - again, you may not see the direct effect of their handicap, but rather it may be something you don't see on the outside!
So Just Remember...
Now, I am not saying that everyone needs to, as they say, "Walk on eggshells" whenever they are around us - that will almost guarantee your Parkie friend's annoyance and displeasure! Nor am I saying that we Parkies are all "thin skinned" - at least I am not. But, just remember to try to put yourself in our shoes - if you had Parkinson's would you like whatever you're about to say? Instead, take time to really converse and listen to your Parkie friends, educate yourself on the disease and it's symptoms - and in some cases, simply being there with them may be the best medicine... remember Job's friends from the Bible? They came to visit him and saw his horrible condition and terrible pain, and then sat with him 7 full days not saying a word. I know Job appreciated this much more than their long-winded self-blaming speeches that came later! So in a lot of cases, less words and more sympathy sometimes are a better help to an individual than anything else... Just think before you speak, and you and your Parkie friend will enjoy each other the more!