Wow, that older ad was…something! I know we all have to try to stay positive, not let our conditions define us, blah blah - but ads like the new one run two risks. One, they don’t show the reality enough, and two, they tip far too easily into inspiration porn, one of my biggest bugbears. Look at me, living my life, furiously ignoring my Parkinson’s/ME/COPD! Aren’t I inspiring to you? And that leads to being told you’re lazy/not trying hard enough/“giving in” if you’re not relentlessly cheerful and pushing past your limits, two things which are not endlessly sustainable.
As for not showing the reality enough, I can only quote my friend Val, who died of MS. Once, when we were in respite together, there was a local news item on MS awareness, and they interviewed a woman who was still fairly mobile, could walk to the shops, etc. I could feel the steam coming off Val in her recliner next to me - she used a wheelchair which she couldn’t push herself in, had some difficulties talking and swallowing, and was legally blind. Finally she exploded. “If they’re gonna put MS people on TV, why the fuck do they never choose people like me?”
"Just kindness and gentleness knowing that everyone has something going on and being patient is the key to a functioning society - regardless of your illness, wellness or status." This is key. Thanks, Emma
Something l didn't know until relatively recently is that there are different forms of PD. If you have a type of "parkinsonism" which doesn't respond to L-dopa, the progression of PD can be swift and devastating. I know from personal experience as my sister in law and a close friend had this type of "parkinsonism". Their symptoms include hallucinations, visual impairment, inability to stand or walk well, falling over. If you have this form of the disease, you won't be on social media! It's impossible to see or type well enough.
I think it's "classical PD" that appears in films and which the general public know mainly. And even this differs widely from person to person. It's so bloody hard to say anything sensible about this disease! It's a collection of up to 50 symptoms all presenting differently in each of us.
Wow, that older ad was…something! I know we all have to try to stay positive, not let our conditions define us, blah blah - but ads like the new one run two risks. One, they don’t show the reality enough, and two, they tip far too easily into inspiration porn, one of my biggest bugbears. Look at me, living my life, furiously ignoring my Parkinson’s/ME/COPD! Aren’t I inspiring to you? And that leads to being told you’re lazy/not trying hard enough/“giving in” if you’re not relentlessly cheerful and pushing past your limits, two things which are not endlessly sustainable.
As for not showing the reality enough, I can only quote my friend Val, who died of MS. Once, when we were in respite together, there was a local news item on MS awareness, and they interviewed a woman who was still fairly mobile, could walk to the shops, etc. I could feel the steam coming off Val in her recliner next to me - she used a wheelchair which she couldn’t push herself in, had some difficulties talking and swallowing, and was legally blind. Finally she exploded. “If they’re gonna put MS people on TV, why the fuck do they never choose people like me?”
"Just kindness and gentleness knowing that everyone has something going on and being patient is the key to a functioning society - regardless of your illness, wellness or status." This is key. Thanks, Emma
Hi Emma
Something l didn't know until relatively recently is that there are different forms of PD. If you have a type of "parkinsonism" which doesn't respond to L-dopa, the progression of PD can be swift and devastating. I know from personal experience as my sister in law and a close friend had this type of "parkinsonism". Their symptoms include hallucinations, visual impairment, inability to stand or walk well, falling over. If you have this form of the disease, you won't be on social media! It's impossible to see or type well enough.
I think it's "classical PD" that appears in films and which the general public know mainly. And even this differs widely from person to person. It's so bloody hard to say anything sensible about this disease! It's a collection of up to 50 symptoms all presenting differently in each of us.
My brain hurts. Still sending love, Sarah 💞