Crumpets, Joe Dolan and a Young Man cries...

Blog post Sunday March 8^th

High Tea

So the first week of my unpaid leave is almost over and we have been busy.  If I had hoped for a rest or time to myself, well, that will have to wait.
 
Our lovely Jenny worked her last shift with us over last weekend. It was one of my work days of course, so I didn’t see her, but Roch and I hosted a small get together in her honour on Tuesday and I saw her then.  On Wednesday we spent time with Jenny and her mum Elizabeth – I thought a ‘high tea’ might be in order and served cucumber sandwiches, hot buttered crumpets and lemon drizzle cake. I’d tell you it was civilized but that would be lying – it was far too enjoyable to be civilized. ‘Getting to know you’ took all of ten minutes and after that it was nonstop chatter all round and plenty of laughter. We’ll see Jenny again before she goes home, so no goodbyes just yet.
 
King’s College Visit: some anxieties allayed

Thursday we were off to Denmark Hill to see Professor Al-Chalabi again.  I had a list of questions this time. Jenny had shared some concerns with me so I was anxious to speak to him. The strain of the journey has been completely lifted from me by our good friend Gerry C, our ‘chauffeur’ on these occasions. He tells us that he enjoys the journey and I like to think that’s so, because we certainly enjoy our time with him – he is such good company. Great Joe Dolan banter. By the way, it was Big Tom and the Mainliners with 'Four Roads to Glenamaddy' (this was a question under discussion).  Don’t forget the Joe Dolan CD next time, Gerry…"More and more and more..."

When we arrived at the Neurology clinic, I went to report our arrival at the reception desk and Roch wheeled himself off to wait. When I turned, he was in conversation with a gentleman whose arms hung loosely by his sides in that tell-tale MND way. His attention had been drawn by Roch’s neck support – a soft and pliable yet effective device supplied by Amber, Roch’s physiotherapist.  A conversation ensued with this man and the family members who accompanied him.  As ever, symptoms presenting in a very different way to Roch,  but what struck me most was how ill equipped that family seemed to be, facing the journey ahead. I don’t know if it had to do with the area they lived in and lack of services there (they told us they had recently been in touch with the MND Association, which had been the first thing we urged them to do) or their bewilderment in general. He seemed to have given up and his loved ones were clearly stricken with anguish. Their situation caught at my heart. They were called for his appointment and we didn’t see them again. I wish them well.

While we were waiting we were approached by the Clinic Coordinator who asked if we would consider taking part in some ongoing research projects. We have agreed to be involved and I was especially interested in one of these. But more of that in a later post.

Professor Al-Chalabi then appeared and called us in – asking Roch’s permission for two others to be present. One, a visiting doctor, the other an Association Visitor. Of course Roch was fine with this.
For his part, I guess Professor Al-Chalabi  is monitoring Roch’s condition and so he completed the ALS functional rating scale again – a series of multiple choice questions around physical capabilities, charting the decline. Roch scored 14 out of a possible 48, which is pretty low but not a huge decrease from three months ago. He scores on speech and swallowing mostly. Everything else is in freefall.

Of course, I had my questions. Jenny had mentioned that Roch had felt faint a couple of times. One occasion I think, really worried her and occurred when he had been sitting quietly in his recliner for some time. So it did not occur after exertion. He had eaten, so she didn’t think it was a nutritional thing. She told me his face drained of colour and he felt very weak and dizzy. It passed off, but it worried her. She wondered if his heart was affected.  Now this is what I love about Professor Al-Chalabi – he never dismisses your fears.  He reassured us and said the simplest and most probable explanation was some dehydration combined with being in a sitting position after eating, which could result in a feeling of faintness, as the blood travels to the muscle extremities. But to be on the safe side he asked for an ECG to be done, there and then. Before we left the clinic, he was able to get a message to us confirming that Roch’s heart was fine.

Jenny had also expressed some concern about Roch’s seeming memory loss. Now I had some reservations about this as let’s face it, his memory has never been great (and there is a certain amount of selective memory loss in there somewhere) but he does forget things. There is a lack of motivation in there too, so whilst it may seem like he’s forgotten to do something, actually he may just be blocking it and I totally get that, however annoying it is to have to keep reminding him. However, these could both be symptoms of depression (perhaps the low dose of antidepressants isn’t working) or a result of lack of ventilation: Is he using the ventilator enough? Are the settings on the machine correct? Throw in the increase in fatigue lately – maybe it’s the breathing getting worse?

What I did not want to hear was any mention of Frontal Lobe Dementia, which affects 5% of MND patients and results in distressing personality changes. Personally, I did not think this was in the mix at all for Roch, and Professor Al-Chalabi confirmed this. First of all, he was quick to set me right. Memory loss, he stressed, is NOT a symptom of FLD. The patient becomes stubborn and difficult to live with - here I could not resist a joke, in my defence, maybe it was the relief – “So,” I interject, “If he did have it, how would we know?” Hahaha

In fact, all present enjoyed a laugh – even Roch. I don’t think it’s the first time Professor Al Chalabi has heard that joke.

We suspect that the increase in fatigue, memory loss and lack of motivation could be down to a decline in respiratory function but this will need to be confirmed at the Royal Brompton. Happily, we are off there tomorrow for an overnight sleep study and they will do the necessary tests and readings so we should know more by Tuesday. Professor Al Chalabi was keen that the appointment was kept.

On our way out we spotted a familiar face. What a joy to meet Liam Dwyer @liampdwyer again and his wife Anna. Liam is something of a celebrity now in MND circles, a tireless campaigner for MND awareness and disability rights, ably assisted by Anna who is always by his side.  Being with Liam just makes me smile. His own smile is infectious and his positivity, cheerfulness and humour are a joy. Meeting him on Thursday quite simply made my day brighter. I should mention that Liam was nominated this week for Charity Campaigner of the Year – he was one of three finalists. Although he didn’t win, he did win MND Campaigner of the Year status – well deserved.

Dignity in Dying: Tears are shed

Friday brought the first shift for one of Roch’s new Personal Assistants, who turned not a hair when informed that we were expecting a film crew that afternoon, to do some work with us on behalf of the Dignity in Dying campaign.  I had popped out to do some shopping and returned to find mountains of equipment outside the house and our small sitting room full of smart, fashionable looking young people (aside to my children: of course when you and your friends are home, this is a common sight).

As always, Roch and I were well looked after by Dignity in Dying Press Officer Mickey and although it felt like a long and tiring afternoon, I think I can say that it was worth it. Roch did really well and it was his new PA who noticed first the signs of fatigue, suggesting to me that it might be time for a break. She remained totally focused on her charge throughout and even agreed to be filmed assisting him! Full marks on the first shift Amelia.

I did have to have a word with Roch afterwards, however, as only one member of the crew cried during his interview. You can do better, I told him. Last time, the whole crew were in tears. For the record, though, I was very impressed by the Silverfish film crew, including the young gentleman who shed a tear. I found his genuine sympathy and concern very touching. Thanks to Nathan, director and interviewer for his focus and insightful questioning. By the way guys, moving the table for filming turns out to give me more space near the dishwasher so thanks for that! ;) 

You will have to wait until the film is complete before seeing Roch’s input and for an update on the campaign. Mickey and the Silverfish film crew are travelling round the country this coming week to interview other supporters.