‘What is something your friends and family can do to show you how much they care?’
A while back, someone asked people with Parkinson’s disease this question on a public Facebook forum. One of the first replies was bittersweet. Bitter because of the loss that was undoubtedly experienced, and sweet because of the wisdom found.
After reflecting on the question, this person replied, “Almost everyone walked away from me … it was their loss.”
If you want to show you care, stay. However, if you are staying under false pretenses, I’m not sure staying is the best thing for either party.
In answering the same question, a handful of others commented that they would like to be offered help, but don’t want to be treated as if they are helpless. As a caregiver, you want to be sensitive to the person struggling with the disease.
Sometimes it’s easier to take control and do it yourself. You can do it faster. You can do it more easily. I understand that. But everything you take away that we are able to do, no matter how big or how small, is one more step of independence taken away from us.
There’s more …
Show us you care by being patient, as several commenters said. We are slowly losing our minds. Literally. Sometimes we are well aware of it. Sometimes we are not. Those are the times we may need a little more patience, a little more tender, loving care. And maybe a joke or two.
People with Parkinson’s (PWP) want to be treated as if they are still valuable and not worthless. However, because of their limitations (seen and unseen), PWP can easily feel they are of no value and have little or no worth. They (as well as all people with chronic illness) can feel like a bother, an imposition, and an inconvenience.
This is one reason why it is good to study up on the disease. You find out what to expect, what is normal, and what isn’t. So many think that Parkinson’s is defined by tremors, and it is, to a degree. But Parkinson’s is so much more than the most “popular” symptoms: tremors, dyskinesia, masked face, shuffled gait. These are the popular symptoms because they can be seen. Educate yourself on the disease and you will find so much more you can’t see.
One reply to the above question was, “Don’t say I look good when you see me.” This statement left me reflective. There have been many times when I haven’t seen a friend for a while and the first thing they say is, “You look good.” I know what they mean, but it has always bothered me. It wasn’t until I read that comment that I realized why.
When others know we have Parkinson’s, do they expect to see a hunched over, shuffling, shaking, inaudible individual aided by a cane or a walker, like the stereotypes portray? Do they expect someone who appears drunk because their balance is off and they are tripping, falling, and speaking unclearly for no apparent reason?
What do they expect? The stereotypical little old man or … me?
How would I like someone to show me they care? Just follow the golden rule: Treat me the way you’d want to be treated if you were in my Parkinson’s shoes.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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