We Brits do like a
good moan.
Take the weather. It’s
usually either too hot or too cold or too wet or too dry, but rarely just
right.
When it comes to
talking about your newly diagnosed neurodegenerative disorder on an online
forum, some doom and gloom is, of course, justified. But the forum on
Parkinson’s UK is particularly full of negativity. If you want stories of depression and despair,
serious drug reactions and family breakdowns, then fill your boots.
On one recent thread,
two newly diagnosed women in their early forties both said the same thing:
“I keep searching for positive stories….”
“I too would like to hear some positive stories.”
I thought about it for
a few minutes and then posted the following:
“In my first year after diagnosis I went through my fair share of ups
and downs. But here are 7 reasons I’m now positive:
1.
Young
onset PD typically progresses very slowly. Most people with YOPD lead a decent
life for several decades.
2.
With the
right medication, the motor symptoms of PD can virtually disappear - the main
challenge is fatigue.
3.
I still
work almost full time (4.5 days per week) in a demanding job (10 hrs+ per day,
lots of travel).
4.
I still go
on nice holidays, enjoy activities with my daughter, pursue my hobbies and even
still run a little (I can’t run marathons any more but I don’t want to anyway).
5.
There is a
huge amount of money going into research which could result in a cure in our
lifetimes.
6.
I’ve got
to know several people locally with PD and we are very supportive of each
other.
7.
Although
some days are pretty tough to get through, having PD has sharpened my focus on
what matters in life. With a supportive family, I can honestly say I’m happier
now than I’ve ever been.
You will likely have to make some adjustments but you can still live a
wonderful life for many years to come…
Best wishes”
The responses were
truly heart-warming.
“Can I just say how good it felt to read something so positive. I was
diagnosed a few months ago at the age of 50 and have been struggling to find
some solid ground, so to hear from somebody like you is lovely and gives me a
real boost.
Thank you.”
“Your reply is
exactly what I’m looking for
Thank you”
“Thank you, it
makes such a change to hear something positive.”
I was probably
embellishing a little, and the long-term prognosis is not so rosy, but I felt good that day.
Negativity can be
self-reinforcing. But a little positivity can be infectious too.
