In New York

In New York

Friday, 7 June 2013

Roch The Outlier

We had what I think of as ‘the biggie’ the week following The Brompton visit – his appointment with Professor Al-Chalabi at King’s College Hospital. For the second time, friend Gerry took time off work to drive us there. I really can’t put into words what an enormous help this is. It means I can relax and concentrate on the matter in hand and I’m not completely shattered by the time I get Roch home. Roch has the pleasure of spending time with one of his best pals on what can be a stressful day. Gerry is  very good company and I hope I’m right in saying that we all enjoy the journey there – and back again.  As we don’t have the WAV yet, someone has to accompany us, as I can no longer get Roch in or out of the Berlingo by myself. Gerry’s pragmatic approach and willingness to listen to Roch’s instructions make him an ideal companion and helper. The old manual wheelchair came into its own again. Man that ramp is steep! The days when Roch could get in and out of that wheelchair unaided are gone, fading into memory.  Anyway, not to dwell on that – when we arrived at the Neurology clinic I was disappointed to see that Professor Al-Chalabi’s name was not on the board. In fact, I later learned that he was attending the ENCALS (European Network for the Cure of ALS) meeting in Sheffield so I think we can let him off.

Professor Shaw did the honours. We have seen him once before and he makes a satisfactory substitute. Both are expert, professional and direct in their approach. Perhaps Professor Al-Chalabi’s manner suits me better. It’s hard to explain. He seems interested in an animated way – as if he might learn something new himself from Roch. It’s not that he gives me reason to hope but somehow I always feel more positive afterwards.  

Professor Shaw asked Roch if he objected to the presence of two students for the consultation. Roch never has any objections to this, as students have to learn I guess.  So we had two onlookers for the duration of the proceedings. Professor Shaw gave us a goodly piece of his time and was very willing to answer any questions. There really is very little they can do but answer questions and monitor his condition, which the Professor did with interest, given the slow progression of Roch’s ALS/MND, calling him an ‘Outlier’ meaning I suppose that he falls outside even the limits of their non-too predictable parameters,  making prognosis even less certain than with other, more ‘typical’ cases.   Roch again asked the burning question “Am I likely to die still able to speak?”   He had asked Professor Al-Chalabi the same question last time. Professor Shaw was perhaps more clinical in his response. “No,” he said, “Statistically, 95% of patients die having lost the ability to speak. But then, you are an outlier.”
Roch talked about the recent shoulder pain and resulting problems with transfers and he referred us to the physiotherapy team at King’s. We saw a physio there afterwards (more anon).

At the end of the consultation, he turned to me and asked me how I was. Even our hero Professor Al-Chalabi doesn’t do that. Admittedly I would have found it difficult to confess to a lowness of spirit or discuss anti-depressant medication in front of the student audience but it was nice that he asked. I was honest enough to say “It’s very hard.” After that, he asked if I still worked and I told him yes, and a little about the job, which effectively headed off any further probing. Sometimes, I don’t know how I am.

I’m not sure any more if that one is ‘the biggie’. I’m beginning to think that the Respiratory appointments at the Brompton loom larger and will be of more significance in the coming years. The next appointment at King’s will be in December, two weeks before Christmas oh my!

We see the physiotherapist

After taking our leave of Professor Shaw, we headed off to Physiotherapy. Roch has never had a great deal of time for physiotherapy in the context of Motor Neurone Disease, although he is always grateful for the efforts of the physios from Richmond Neuro Rehab. He’s pretty cynical about how much real help physiotherapy can be.  In all fairness, some of the most useful aids have come from them, such as the ‘foot-ups’ and the walking sticks and they give very sound advice about safe ways to stand and so on.

My first impression of the physio we saw at King’s was that she wasn’t listening closely enough. As the session progressed, I thought she became more focused. Her examination of Roch was gentle and seemed competent and there has been no discomfort resulting from her manipulations.  I explained to her that I was concerned about the way in which I was assisting Roch to get out of bed. With her in Roch’s place, I rather clumsily demonstrated my method and she agreed it was bad, for my back and his arm.  Because the bed rail is in the way, it’s really hard to assist him without pulling him up with his left arm.  She showed me the better way, which involves assistance at the trunk rather than the arm and advised that our local physio bring me through it again. This is a good idea, as the way she showed me didn’t take the position of the bed rail into consideration. So we will have to ask Amber to come up with a plan. Anyway, she advised that Roch continue on the anti-inflammatories prescribed by the GP as she said the inflammation in the right shoulder had not gone away.

The disappointing thing is that when we received our copy letter, the original of which went to the GP and Richmond Neuro Rehab, there were several inaccuracies – which proved that our first impression had been correct and she hadn’t been listening properly.  I suppose it doesn’t help my impression of her that I come across as a bit of a dimwit pulling at his left arm (she states that Roch reports ‘severe pain’ in the left shoulder. No, actually, the pain is in the right shoulder and that’s why we came to see you in the first place). Heigh ho. But yes, I do get that pulling at his arm is bad. Yes. Thank you.



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