Lower half of wheelchair with red light reflected on person's legs

Wheelchairs and Bedside Commodes

In the most recent conversation we had with my father’s neurologist, he was able to look back at the progression of my father’s Parkinson’s disease (PD) and guesstimate what the following months and years look like.

This neurologist is young and tends to be on the more optimistic side of the conversation. I’m not sure if he’s actually like that or if he just does that for our sake.

The Parkinson's is progressing

My father’s hand tremor began in 2013 and since then, he has gotten rapidly worse. By 2018, a person had to be blind not to notice the difference in my father from 5 years ago. The time for us to chalk it up just to “old age” was gone.

We had to come face to face with reality - the truth that the next decade of his life and our lives were going to look completely different than what we had imagined for him. One can only imagine what he had in mind for his future. I don’t think having PD was in that picture.

So as my father’s neurologist is explaining to us that his progression rate is rapidly quicker than most, we are also morbidly wondering what that means for him and his time. His doctor says the symptoms and progression of his Parkinson’s that has shown for him in a matter of 7-10 years typically shows for most people with PD in 15-20 years.

The rapid nature of his disease leads him to believe he might have a very specific “strain” of Parkinson’s, different from what the typical strain is for people at his age.

Not interested in therapy

And then comes the optimistic “However” from the neurologist. “If he takes part in physical therapy or speech therapy, then there might be quite a slowing down of his symptoms.” He’s new and doesn’t have a clear idea of how my father has decided to deal with his diagnosis.

My sister and I politely let him continue pushing the idea that physical and speech therapy are great ways to help keep quality of life up. We nod along and when he is done, we gently break it to him. Our father is not motivated to do his physical therapy or any therapy for that matter.

Not with a partner or alone. And so, quite bluntly, we asked the Parkinson’s disease million dollar question - “What do the next few months and years look like if he doesn’t do his therapies? Is there a timeline for this situation? He has dementia as well. How does that play into his time left?”

What does the future look like?

While he was not able to give us a definitive number obviously, he was able to give us a clearer idea of where we are headed and how we need to prepare. Be prepared for him to be in a wheelchair. His mobility will continue to decline and it will get harder for him to get to things.

He will be fitted for a custom wheelchair. Think about a bed that serves him more as a patient. Be ready for a bedside commode possibly. His appetite will continue to diminish. He won’t be hungry but it will be important to get him to eat. His memory will continue to go for him. Right now he forgets short-term things but soon his long-term memory will also go.

Despite all our confidence and experience with managing our father’s health, we weren’t quite prepared to hear all that. I don’t think I’ve even fully processed it until I just wrote it. My go-to move in instances like this is to throw myself into action items. Which doctors should I call and what equipment is the best?

Finding ways to be there

But for the time in this journey, I did not do that. I just listened and tried to hear what this meant. No matter what equipment we get or how much we change our lives this is going to be very hard for him.

In these remaining years of his life, we will have to support him, and love him, and find ways to be there for him even if he can’t see that. With each new chapter of this journey, we have to find new strengths and new ways to be there for my dad.

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