A rather good meeting

Prof Kevin Talbot

This afternoon we went to our local MNDA meeting. It was in the Peartree Holiday Inn - and there were a lot of us there. The main meat of the afternoon was feedback from Professor Kevin Talbot, the boss of Oxford's MND Centre about the research going on there. As usual he was very clear for us lay folk about very technical matters. The thing that made me most sit up was the fact that now he is involved with the three largest pharmaceutical companies. As I understand it this is because he feels research has now reached the stage where the drug companies' vast libraries of experimental drugs might usefully be tried on MND-affected stem-cells. Members of his team are now producing sufficient of the latter to try "treating" them, the cells. He told us that, though he believed a cure would be found one day, there was a long way to go yet and it was impossible to predict.

Something else he told us was that the specialist nurse who runs the clinic, Rachel Marsden, and the specialist OT, Jenny Rolfe, the country's expert on wheelchairs for neurological patients, have been appointed to NICE's (National Institute for Health and Care Excellence) advisory panel on MND. I reflected again on how blessed I am to have this Care Centre monitoring my condition.

Jenny Rolfe

Jenny herself reported on the International MND Symposium of last December, which happened in Milan. She concentrated on the care side, such as improving non-invasive ventilation, the evidence of the pros and cons of different direct feeding methods, the devising of an optimum powered wheelchair for people with MND - the Neuro Powered Wheelchair. Judging from my experience there can be no one better than Jenny to know exactly what's needed. One thing she mentioned - which clearly appealed to a lot of others - was the Cuddle Chair, a riser-recliner sofa, designed so that the MND person could have two armrests, essential for standing up, but also can sit with someone, rather than always in isolation. I looked it up on the internet when I got home (Wealden Rehab Kent); ominously there's no price. But it would be nice....

MND - what's your dream?

Following on from my last post, Bo Stern whose husband, Steve, is a long way down the journey of ALS/MND writes an inspirational blog, The Difference of Day and book Beautiful Battlefields, both crafted in the crucible of her own experience. Yesterday, Martin Luther King Jr Day, she posted this. I love that last paragraph: "I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free."

"It’s been a tough couple of weeks on the ALS frontlines, and last night was especially hard, filled with breathing mask difficulties and some scary choking episodes into the wee hours. I’m sure every serious illness comes with problems for which there are no solutions, but ALS seems to specialize in them. 

I often feel helpless and useless, sitting beside Steve while he chokes and tries to find his way back to regular breathing (and then apologizes for keeping me awake). This morning, my facebook newsfeed is filled with tributes to another friend, lost to this battle. We are expecting to say farewell to several more within the next few weeks. And sometimes it seems we’re no closer to finding a cure than we are to achieving Lou Gehrig’s batting average (.343!)

But today I am home from work because it’s Martin Luther King, Jr. day. And, though I know we still have far to go in achieving true racial reconciliation and equality, I wonder if, in his lifetime, he could ever have imagined that his name would be attached to a national holiday. As he fought on the front lines of racism and segregation, how could he have known how significantly he would help to alter the course of history? He just did the work. And he believed. And I’m guessing sometimes it felt like he was believing his way through quicksand, because he said this: 
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” MLK 

I am working at believing. Believing for a day when breakthroughs will come. When science will crack the mysterious code that keeps so many suffering. I am believing that, even if there’s never a national holiday to celebrate the eradication of this relentlessly brutal disease, that my grandchildren and great grandchildren will gather for dinner somewhere and the same time every year. And they will raise their glasses to their strong, valiant, soldier of a granddad…who never stopped fighting. 

I wonder: what are you believing for today? What seems impossible? I am wishing you the strength to stand in the trenches and the strategy to make inroads that generations will thank you for. I am wishing you life and joy and peace in the battle, though sometimes those things seem impossibly incongruent. I am wishing you the bravery of Abraham Lincoln and Amelia Earhart and Malala Youfsazai. Because we all have a story and we all have a storm. May we have the faith to believe with Martin Luther King, Jr., that “unearned suffering is redemptive.” 

So, I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free. 

Let Freedom Ring, 

Bo"

Primary Lateral Sclerosis uncovered

In our monthly newsletter, someone with PLS (the sort of MND I have) sent in this description by a chap called Galen trying to explain the condition. It’s rather good. (I hope he won't mind me quoting it verbatim. As you can tell he has a sense of humour - which is quite helpful in the circumstances.)

If I start telling people about upper and lower neurons I can almost see their eyes glaze over as they decide I must have some need to tediously explain PLS. They then avoid me. If I launch into how PLS may be a "gentler and kinder" form of ALS, or Lou Gehrig’s Disease, people often fixate on the ALS part and have even asked me why I'm not dead yet and how much longer do I expect to live. When I tell them I have a rare condition that causes a loss in communication between the brain and motor functions, most people feel I've been technical enough and sufficiently succinct.

If folks are still curious I can launch into examples. Walking over to a table to set down a glass of water is something that is done almost without thought by most people, however, the communication with my brain and the rest of my body has gotten so that I have to concentrate hard to even walk to the table. Trying to carry a glass of water is likely to overtax the limited capacity I have remaining, with the likely result being that both I and the glass will wind up on the floor. Or it can be more insidious. If I'm about to get out of a chair I may have devote virtually all of my resources into planning and executing exiting the chair, and may actually wind up ignoring anyone trying to talk to me while I try to stand. It isn't because others are boring or anything, rather I have to focus so hard on getting up, it blots out other things.

It's not a problem with the brain, we remain as sharp as ever. It's not our muscles, they work fine. It's communication between the two that is the problem. Walking requires intense communication with our balance sensors, our brain, our legs, feet, even our toes. Our consciousness isn't aware of it, yet it requires constant fine- tuning. Throw a monkey wrench into that communications system and you wind up with someone who can barely stagger anymore, a symptom many of us can relate to. Sometimes one side is affected more than the other, and you get someone like Ronnie, or it can be pretty symmetrical, like Flora, or it can add to an already serious personality disorder, like me.

It can have strange results. You can be at a funeral and your brain can be saying: "Whatever you do, don't make a scene," but because the message gets garbled, your mouth muscles say: "Roger, brain. Commencing uncontrollable laughter immediately." Or you can think you told your mouth to say to the UPS guy: "I'm feeling fine, and you?" only to have him look up at the sky and say: "You're right, it does look like rain."

We are constantly compensating, whether or not we are aware of it. Maybe that is why we get tired all the time "for no reason." We are always having to figure out new ways for our brain to signal our muscles to do stuff. Our brain may be so busy devoting time to keeping essential functions going that it can't worry about things like walking and talking.

Migration panic

Oh for goodness’ sake! When will our politicians and pressmen stop frantically whipping up this pernicious xenophobia which apparently lurks like a virus just beneath the skin of us little Britons? Scarcely a day passes when the spectre of an island overrun with scarcely human “foreigners” is conjured up by the three main party leaders, like Macbeth’s witches, with Nigel Farage like a malign Hecate pulling the strings, abetted by the oh-so reasonable Sir (no less) Andrew Green of the avowedly “non-political” Migration Watch.

Ken Clarke, one of the few Tory ministers with guts enough to resist the populist tide, asserting that immigrants had made Britain “far more exciting and healthier”, had No 10 Downing Street (presumably his nibs himself) quickly ticking him off, and at the same Nick Clegg (Lib Dem) and Rachel Reeves (one of Labour’s rising stars) denouncing the supposed epidemic of benefit immigration. Our Ken had it about right when he said, “The idea that you can have some fundamental debate that somehow stops all these foreigners coming here is rather typical rightwing, nationalist escapism, I think.”

Mt Kenya from Chogoria

What a sad day it is when we have reached the point of closing what used to be known as our bowels of mercy because of someone’s skin-colour or language or preferences in food – and country of origin! Continually closing your bowels leads to constipation. I was reminded watching Simon Reeve’s The Tea Trail on BBC last night, traveling through Kenya from Mombasa to Kericho, of my gap year which I spent on the east side of Mount Kenya. It was within very few years of the end of the Mau Mau internments – about which I remember one of my fellow-teachers had family experience. He and many in that part of Kenya would have had good reason to hate an Englishman like me. And yet he was consistently kind and friendly to me, and wherever I went I was welcomed with the utmost hospitality. If one of the teachers' cars came a cropper on the potholed murrain roads, there was no lack of willing hands to rescue us. It’s a sobering fact that “Great Britain” is now less hospitable than the former colony, which we once sought to civilise. Our policy-makers now are seeking to make conditions on access to medical help or social care for the alien and sojourner. We consider such things our right and ours alone. We seem to have lost any humanity we once possessed, and become introspectively constipated. 

Keep administering the laxative of common sense, Mr Clarke, and common humanity. As Charles Kingsley put it, "Do as you would be done by."