An alternative Mothering Sunday

Mother’s Day, or, being pedantic as I so often am, Mothering Sunday, is a bittersweet day for me. I smile at the many photographs on Facebook and elsewhere of celebrations, of mothers beaming in the many millions of photographs taken today.

Bittersweet, as I said. My mother died in 2009 and, fair to say, I think of her each day but never more than on her birthday and on Mothering Sunday. Alas I can not celebrate either the mother of my children with any credibility any more. Not through any failing on her part, but mine. Enough said. Leave it there.

Don’t misunderstand me please. I do not even for one second begrudge the many mothers their all too brief public appreciation. The one day in the year where they perhaps get breakfast in bed, a couple of bits of buttered toast and an instant coffee.

We males are pathetic animals really when it comes to these things. If you, mothers, wives and lovers, were expecting a full English or perhaps warmed pains chocolat or brioche with a grand creme or cappucino, brace yourselves for something of a disappointment. No chance whatsoever. And there is a better than evens chance that we will fail to grasp the core fact that the washing up is considered to be part of the process of breakfast in bed. Do not simply leave the dirty crockery on the side. Remember her surprise sigh, midway through the morning which she wouldn’t explain? That was this. And don’t delude yourself that it is of no consequence. Women remember these things. Forever!

On this one day of the year we, the males of the species, have to perform those tasks the female performs everyday without making a big deal of it. Do your best, at least do your best. But be aware you will still fall short.

Flowers? Sure, why not. Chocolates? Dangerous. If she sees herself as overweight, you become part of that conspiracy theory. If she is skinny as a rake, she will point out to you the very absurdity of buying the chocolates.

I don’t k now why I’m dishing out advice. It’s not as though I got it right. I can remember to this day the one occasion I failed to send my mother a card. To say that the response was cool would be akin to calling the second global ice age a bit of a cold snap. It was more glacial than there are words. And, like Kennedys death, I can remember exactly where I was standing, who I was with, the birds in the trees. All of these things are indelibly etched in my mind. There are no apologies adequate to convey the full magnitude of my despair. My mother even seemed to make light of it. “These things happen” she said in the kind of tone that made me realise that these things did not happen and that they were never ever again to happen or further transgressions would be greeted at least by disinheritance.

Even so many decades later, I’m sweating as I write this. My mother was one of the most delicate, kind people I could imagine. So to see her, on this one day of the year turned, by my own failings, into a firebreathing gorgon still rankles even now.

And we are now, sadly, beyond the point where I can apologise.

DBS Diary 13 – 6 month update

Well, not six months exactly. More like five months and 22 days but let’s not split hairs.. Let’s get to the meat in the sandwich. What has changed since my last report? On the whole not very much.. Although I am delighted (honestly) with the results, there is still no doubt to my mind that better still can be achieved. In part this is due to the stimulating location and range of the Boston Scientific DBS system this I received at the beginning of November last year.

Okay so let’s break down the results a little bit. There is no doubt the biggest pluses are attributable to a substantial reduction in tremor. I can now read words on a page where previously I struggled with words at all. The surtitles of the opera house are now once more visible in all their sacrificial and, in the case of opera, often comical, appearance. I can hold a book steady enough to read and not be surprised by the appearance of new and previously unknown characters towards the end. I can now follow the plot. I can hold a camera with sure and steady hand, and the eye of a marksman. I said to my neurologist, a good friend and exceptional scientist, in October, that a steady hand alone would justify the surgery in my mind, that I would settle for that alone.

My right hand has remained steady since. The left hand has a slight tremor and that has perhaps increased a little over the last six months but not enough to detract from my rock steady right. This tiny deterioration may simply be progression of the primary neurodegeneration itself (it is a neurodegenerative illness – remember?) quietly picking off cells in the background like a sniper.

These are the positives. And they are very positive.

But there are negatives and it would be wrong of me to infer that all in the garden is rosy. My motor symptoms have not really improved at all. I still struggle with my walking, bent over much of the time like a question mark when I wanted to be an exclamation mark. This has been surprising enough that, were it not for my rocksteady right hand, I would doubt whether the procedure had done anything. That and the persistent inability to reduce my drug load has been surprising. I had expected greater motor improvement and lower drug levels. These observations will form the basis of my next consultation meeting.

It is important to keep a level head with Parkinson’s and with DBS in particular. People expect miracles and, if they enter the process (and it is a process) with inappropriately high expectations, they will be disappointed. DBS is not a cure. DBS is another tool in the neurosurgical armament, another choice on offer. And DBS as we know it today is a world removed from the DBS of two decades ago. Those almost blundering efforts were in every sense a stab in the dark. Modern DBS, coupled with precise neuroimaging is less of a wing and prayer. The surgeons themselves are artists not artisans. Perimillenial DBS is to its modern counterpart as Cro-Magnon cave paintings are to the Sistine chapel roof. The science has changed that much.

My neurologist told me that it would be an iterative process of changes in the stimulation parameters. We should not expect it to be perfect first time. And I have no problem with that. So, when I see my neurologist I shall update him on the successes of the DBS and we will sit down together to work on those motor symptoms.

Perhaps after I have handed over a bottle of Bollinger…

The true value of patients in drug development

Over the years I have had Parkinson’s, I become progressively more enthused by and protective of patient interests within the field. It would be nice to say my commitment is equally applicable to all areas of patient treatment but a man can only do so much and so I focus exclusively on Parkinson’s.

Patient involvement, in pharmaceutical research and clinical trial design has become a necessity for clinical researchers. Put simply, if you don’t solicit patient involvement at as many stages of the research process as you can, you will be marked down by the funders. In some cases it will even preclude receiving funding. The same goes for drug companies, obliged by the licensing agencies to demonstrate credible bilateral patient engagement.

Drug developers need patients, not only as participants in clinical trials but also as participants in coproduction. In large part these initiatives have been driven, not by pharmaceutical companies eager to hear “the patient voice”, but by researchers recognising that their research will vanish down the Suwanee if they do not.

Obviously that’s a slightly dark and rather cynical position and I put it forward, in part, by way of playing devil’s advocate. I do not believe for one second that this is representative of the kind of board level decision-making within the pharmaceutical industry as a whole. There are a good many drug companies that do, deep down, have a belief in the value of fully integrated patient engagement at every stage of development. And when that is achieved in a non-tokenistic manner, the value to all parties is significantly enhanced.

So you receive invitations to be part of a board/discussion group et cetera. What do you do?

Well it’s important to know who is asking for your involvement. Do they use words like dopamine, receptors, on/off, dyskinesias, nonmotor symptoms and so on, delivered by earnest men and women anxious to know your thoughts?

Or are their sentences replete with words and phrases like leverage, optimising market share, identifying target markets, stakeholder segmentation, and managing consumer expectations, delivered by men in suits with rictus smiles?

The answer to these simple questions may help you to decide.

Personally I get tired of listening to this kind of managerial market drivel. If it’s your path, fine go do it. But it’s not my chosen role. Do I sound cynical? Maybe a little.

The role of patient advocates is a tricky one, walking a tightrope between marketing aspirations and pharmacological realities. It doesn’t matter one jot that the marketeers wants to position a drug in such and such a context, if you can see from the data that the side effects profile is unusually bad. The marketeers can bury their heads in the sand if they wish but the fact is that a drug removed from the market is much worse, publicity -wise, than one which never made it to the market. The latter suggests due diligence, the former smacks of incompetence.

Patient advocates rarely have and would, in all probability, not want that kind of personal responsibility. But they do nonetheless seek a voice in the process and it should be the honest opinion of those advocates and not modified to make it more palatable.

The best relationship between drug companies and patient advocates is one where a long-term relationship is created, constructed upon mutual respect and understanding. This is not achieved overnight. It takes time and trust. It is a mutual education. And above all, if you will forgive me one piece of managerial gobbledygook, it is a win-win situation.

That’s proper patient advocacy. You’re welcome.