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Not one pill out of the 44 aimed at curing PSP…At 3am this morning, I did something I haven’t done for a very long time. I looked properly at my pill box.
These days I don’t organise my own medication. My loving wife does it for me, and I simply take what appears at the appropriate time, helped by her alarms and the reminders of my live-in carer. Alexa is apparently joining the team soon.
Somewhere along the way, I had stopped noticing just how much medication was involved.
So, naturally, at three in the morning I counted it, analysed it and made a spreadsheet.
For anyone concerned that PSP may finally have destroyed my not-so-secret passion for Excel and pivot tables, I am delighted to report that this particular neurological function appears completely intact.
The result was rather staggering.
I currently swallow up to 44 individual pill pieces in a day. In a few days, as another medication is introduced, that maximum becomes 45.
But that wasn’t the part that really stopped me.
Not one of them treats PSP itself.
That is where things become slightly absurd. PSP has created a situation in which I can take up to 44 pill pieces a day, soon 45, yet none stops the disease, slows its progression or cures it.
Instead, my medicine cabinet is full of treatments for everything that has accumulated around PSP: symptoms, pain, anxiety, complications, risks and a few medical issues that were already there before PSP decided to take centre stage.
So if none of the pills treats the disease itself, what on earth are they all for?
Apparently an untreatable disease can still generate an extraordinary amount of treatment.
I Remember When 20 Seemed Ridiculous
Earlier in my journey, I used to marvel at taking around 20 tablets a day, many of them supplements. I even joked about collecting prescriptions while the poor person behind me watched with horror as the pharmacist disappeared repeatedly into the back room and wondered whether I was collecting medicine for myself or restocking a small hospital.
Twenty seemed ridiculous. How innocent I was.
My current pill box began life as one of those long containers designed for seven days of medication. It has effectively become a one-day box.
Once I had counted everything, I wanted to know what was actually filling it.
What Are They All Doing?
The biggest category, by pure count, is Parkinson’s-related medication: 13 pill pieces a day, mainly Sinemet. My form of PSP has significant parkinsonian features, so these drugs may offer some benefit, although I don’t experience obvious “on” and “off” periods that allow me to say with certainty what they are doing. There has been no compelling reason to remove them, so the thirteen stay.
Then there are nine gabapentin tablets for nerve pain, where the answer is much clearer. I have experienced periods of truly horrendous neuropathic pain, particularly through my leg, and gabapentin has made an enormous difference.
Sadly, anxiety now accounts for an increasingly significant part of the regime. I take several scheduled tablets each day, with up to another four available as required. I don’t always need those extras, but they are there for the difficult days. Another anxiety medication is being introduced gradually, which is what will push the potential total from 44 to 45.
That number tells its own story. I would love to have 0 anxiety pills – truly. But PSP is a lot to swallow (no pun intended). The uncertainty is simply so high. What happens next? When? Is this new sensation PSP, anxiety, a drug side effect, another illness or simply a bad day?
Then there is everything else. Three pills for bladder control, which is not a field in which I ever intended to become an online commentator. Four vitamins and supplements: B12, B1, vitamin D and magnesium. One for reflux, which matters considerably more when swallowing and aspiration are already concerns. Four more relate to cardiovascular health and prevention.
These medicines range from treating problems PSP has brought with it to preventing entirely separate problems from joining the party.
I think one major neurological disease is enough.
And Then There Is the Botox
The spreadsheet doesn’t even capture everything.
I use preventative asthma medication and a nasal spray, and today I am heading back to hospital for my third round of Botox injections around my eyes to help control their involuntary closing.
I am very pleased to say that the Botox is helping.
I’m not entirely sure what it says about your life when having botulinum toxin injected around your eyes becomes one of the more encouraging parts of your medical programme. It isn’t even the theme of this post. But that, I suppose, is life with PSP.
Apparently I Qualify for Polypharmacy
At this point I went down a different rabbit hole. Is this number really as absurd as I think? I looked at the research. Researchers don’t usually count every physical pill or half-pill. They count different medicines.
Once the latest medication is included, I take 19 different named products. Four are vitamins or supplements, leaving 15 regular medicines.
Five or more medicines is commonly described as polypharmacy. Ten or more is often called hyperpolypharmacy.
I take fifteen.
So apparently I haven’t merely entered the world of polypharmacy. I have sailed straight through it and am now looking for a gold medal in a competition I desperately wish I had never entered.
That does not mean for a second I believe I am being overprescribed. If anything, it is a measure of PSP, its impact on my body and mind, and the extraordinary amount of medical management that now surrounds my life. There is a reason for the medications, and my neurologist, GP and psychiatrist have to consider benefits, side effects and interactions carefully. Drugs have already been removed or replaced when others were introduced.
That isn’t what struck me. What struck me was this:
Fifteen regular medicines. Four supplements. Up to 45 pill pieces. And still no medicine that alters PSP itself.
The Missing Pill
Modern medicine actually does an extraordinary amount for me.
It dramatically reduces my nerve pain. It helps control my bladder and reflux. It works on my anxiety, lowers other medical risks and may improve some of my parkinsonian symptoms. Botox can even persuade my eyelids to remain open for longer.
I am genuinely grateful for all of it.
The extraordinary contradiction is that medicine can do so much about the damage and disruption surrounding PSP while still being unable to do the one thing I would trade almost everything else for.
There is no compartment in my pill box marked:
PSP. Take one tablet daily. Slows or stops progression.
That pill doesn’t exist.
If somebody invented it tomorrow, I genuinely wouldn’t care whether it took my daily total to 45, 50 or 60.
I’d make room.
There is one final irony. For the moment, I can swallow all these pills. With PSP, swallowing itself can become increasingly difficult, which means even the mechanism I currently use to manage so many of the disease’s consequences may eventually become harder to use.
I don’t know if or when that will happen, and I have no desire to spend today worrying about tomorrow’s problem. For now, I take the tablets, accept the Botox and remain grateful for everything medicine can do.
But after my 3am audit, the contradiction is impossible to miss.
My pill box is almost ridiculously full. And the medicine I would most like to put inside it is still the one thing missing. Having finally worked that out, I think I can safely close the spreadsheet. For tonight, anyway.
