Structure, Structure, Structure

Sometimes, when I decide to act my age, I go off routine. I get wild and have my coffee at 11 AM instead of 10:30. Or I don’t make lunch the night before and decide to eat out last minute.

I always live to regret the wild decision that breaks the routine. I find myself, especially during this pandemic, having become quite accustomed to routine not just for myself but for my body as well.

But I can understand how routine can put quite a dulling light on life. It takes out the joy of spontaneity and choice to do whatever you want.

Creating a routine for Parkinson's

When we changed neurologists for my father, the first thing we asked him was “How can he get better? What can we do to help him get truly better?” He said he needs structure and routine.

He needs to do things and live life very structured every single day. The minute he said that we knew there was no hope. My father won’t be getting better.

The fact that he needs structure and routine is not new information to us. We had been trying to implement a structure for him for as long as he had been showing Parkinson’s symptoms.

The hardest part about implementing a scheduled lifestyle for my father was it felt like he did not want to get better. He does not do his physical therapy on his own. He definitely does not do his speech therapy.

A loss of control

He barely exercises and he eats what he wants when he wants. But after doing my own reframing of the situation, I started to understand and see what he hated so much about having such a scheduled life. He felt like he had no control over anything.

Just as he started to lose the ability of his body, his mind started to go. And then, his family and doctors are trying to force him to live a certain way.

For a man like my father, who has been his own boss for 30 years and who never really answered to anyone but himself, this loss of control was and still is crippling. He always had a vision for his life and for our family’s life. It wasn’t always well-executed but he was in control and now he had none.

Lower quality of life

None of this changes the truth. Without structure - eating at exactly the right time, 1 hour before his medicine and 1 hour after his medicine, exercising at the same time every day, waking up and going to sleep at the same time - without any of these lifestyle changes, he won’t get better.

And the morbid part inside me says maybe this is his way of rushing this part, reaching the end as quickly as possible, and then he will have peace. But that’s not how Parkinson’s works. Refusing to implement lifestyle changes only ensures a poor quality of life.

It won’t kill him in the literal sense but the less work he puts in to improve himself, the lower quality of life he will have. Something we can already see happening.

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