Rollercoasters

Rollercoasters have always made Posy sick! She didn’t have a great beginning to 2022. After an utterly amazing third quarter of 2021, the final quarter was not good. By New Year, Posy was beginning to prepare herself for her decline. Now, however, she is on the up, up, up! What is going on?

In her element

In October 2021, Posy was in her element! Having spent 3 years composing the songs for her new musical, she somehow stayed (happily) busy day and night as show-week approached. It was fun working with actors and actresses again.

Posy was absolutely driven. She was her old self once again. By the end of the run, Posy was on a high. In addition, her stamina and singing voice, which had declined in early 2020, now made a gratifying reappearance.

Was this purely the effect of extreme motivation on her adrenaline? Or is a positive mindset as effective as exercise for holding back Parkinson's disease?

Going downhill

Friends, many of whom had not seen Posy since before COVID arrived, were amazed that she was so vibrant and on top of things. Some seemed to doubt that Posy actually had Parkinson’s. She herself began to doubt her diagnosis! Her brain was running at its most elevated level and her body was enjoying the activity.

It was good to feel human again. Lockdown was over for the world and Posy was emerging from its shackles with a new optimism. And then ... down we go! Whoosh! It is far scarier to ride downhill on a rollercoaster than it is to struggle uphill.

Do you find it easier to climb up a ladder rather than down? With a progressive disease, going "up" is a surprising, rewarding, exciting, and challenging interlude. Going "down" afterwards is tough. The descent takes with it your newly acquired, and rather fragile, hopes and positivity.

Losing control

In December, Posy took a trip to Florida to see her daughter. Unexpectedly, the traveling itself turned out to be a real challenge. Then, on her return to the United Kingdom, the jet lag hit and went on ... and on ... and on.

By Christmas, days in bed were beginning to encroach on her life once more. Posy was beset with trepidation, imagining where this downslide might end. Her mind conjured up awful, depressing images.

Too tired to enjoy the ride

As ever, Posy could not fall asleep at night. The resulting chronic and acute fatigue were crushing her spirit and her body. It seemed impossible to get up when a ton weight was pushing down on her skull.

By 5 PM, or, on better days, by lunchtime, Posy seemed to be able to get on with chores and have a coffee with her neighbor. But the cycle repeated over and over. Posy dreaded the darkness of night more than ever.

Support along the way

Posy’s consultant had prescribed new medicine for leg pain, sleep, and akathisia to help her get through the night. This instigated several hideous months of trial and error. At first, Posy could not tolerate them. Eventually, doses were amended, and the right combination of meds have now been established.

A Parkinson’s psychologist also concluded that Posy was on alert 24/7, scared of missing an urgent text from her daughter. He insisted she leave her mobile phone in another room overnight, and Posy’s family were to call on the landline in an emergency. In addition, he offered her a course in mindfulness as an aid to sleep.

After all this effort, Posy seems to be better. Woohoo! Sometimes, defeating one’s own innate pessimism seems like a miracle in itself. Being at the top is mind-blowing!

Of course, the weather plays a role in improving Posy’s state of mind. Today, the sun is shining and Posy can sit in her lovely garden once again. A blue sky is hugely motivating, and Posy is getting up earlier, achieving much more, and enjoying her life.

Remaining hopeful

No one can promise that things will never change. Parkinson’s is a progressive disease. Progress in this instance is not desirable, but probably inevitable. Tomorrow may or may not be different.

Posy will try to be content if tomorrow is just okay. If tomorrow sucks, she will try to be grateful for the great days she has enjoyed in the past. The important thing is to be able to hope that tomorrow will be good.