Quality of Life (QoL) is a term much used in the world of PSP, but I think many researchers, medical experts, and those involved with PSP frame it too negatively. I’m going to challenge that thinking.
In a disease with no cure or treatment, QoL is the only real focus. Other illnesses chase treatment, rehab, medication – more life. PSP? It’s QoL from the start. In those other conditions, it barely gets a mention because the goal isn’t quality; it’s quantity.
To be a little provocative, it’s ironic how “quality” dominates in a disease that devastates it. It almost feels insulting: “You’ve got PSP – focus on the quality of your life, which will be terrible, because sadly, there’s nothing we can do.” When I was diagnosed, I was told to “spend time with my family,” which boils down to the same thing.
All that said, QoL is what we’re all after – PSP patients, caregivers, everyone. Years mean little if they’re filled with misery. And this applies equally to caregivers, who are arguably as impacted, if not more so, on a QoL level – bearing the constant weight of vigilance and unspoken grief while juggling their own lives.
So, what is Quality of Life?
Before sharing my view, I wanted to see what science and research had to say. I looked at the literature and found an interesting study with a 45-question QoL questionnaire for PSP – 22 on physical health, 23 on mental, plus a subjective 0-100 life satisfaction rating. The questions are below, from the report here.
I will admit that I got sucked into the article and built a spreadsheet to rank my score against the averages for PSP-RS and PSP-P etc in the article and I thought it was great. Then I spotted something….they tell me how the disease is impacting me practically in terms of activeness of the symptoms on specific points of focus but they don’t speak about my Quality of Life.
The questions are clear and relevant but they are overwhelmingly negative: Anxious? Depressed? Difficulty eating? Of course these erode QoL – they’re PSP’s fingerprints everywhere. It turns measurement into a simple subtraction: QoL before minus PSP equals QoL now. I don’t see it that way. As brutal as it is, life continues; we adapt, evolve. We should assess the now – positives and negatives alike. If I have a good coffee and a catch up with laughter with a friend today I don’t compare it to one 6 years ago, in the hear and now I laughed and for a short time had a good time.
A second minor quibble: All questions weigh the same, which doesn’t reflect reality. But that’s detail and not for today.
A Different Lens on Quality of Life
For me, QoL means making the most of the time and situation I’m in. It’s time with family and friends, a good meal with a glass of wine, connecting to my faith, studying with my children, holding onto purpose and meaning. It’s hoping I can attend my daughter’s upcoming wedding without stealing the spotlight.
These elements nod to the survey’s “satisfaction” part, but there’s a valid point here. While facing the negatives head-on, we must avoid defining QoL solely by lost abilities or PSP’s shadow. It’s deadly serious – we can’t dodge it – but in my view, that mindset risks a self-fulfilling prophecy.
Some will disagree, preferring to name the brutal reality. And honestly, in months or years, I might feel differently. But five years in – wheelchair-bound, unable to drive, plagued by pain and faulty vision – I reject that lens. I won’t measure against a vanished former life; it just breeds negativity.
What I’ve learned: Life has changed beyond recognition in ways I’d never choose, yet I wouldn’t trade it with anyone else’s. That’s the spark those negative questions miss – the quiet worth in adaptation. The default doesn’t need to be only negative – that sets the norm and from that other people like carers take cues. This is purely my personal opinion and I fully understand that others differ and I am not saying the questions don’t have a purpose – they are useful in context.
If I designed a survey, I’d include meaning in life, connection to loved ones, effective pain management, and other positive measures alongside the essentials here. I don’t want to sugarcoat PSP, but this matters. What do you think? What does Quality of Life mean to you? I’d love to hear.
Source: The PSP Quality of Life questionnaire is detailed in this research article: PMC Article.
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