A Photo shoot, the Thatcher Room and an Old Friend

We were back at Westminster last Wednesday. This time at Portcullis House. Roch was asked by the MND Association to speak at the All Party Parliamentary Group meeting to launch the findings of their audited Report on Specialist Palliative Care in the UK. One of the main findings from the Report is that MND is a 'hidden' disease with few health trusts even knowing how many people with MND live in their area. Of course Roch's experience has been different. His job was to bring his positive experience of palliative care to the meeting - how it could be for everyone, throughout the country. At present it is a matter of chance and to coin the over-used phrase - a postcode lottery.

There were nerves, of course, but he had written his speech himself, so knew exactly what he was to say. This had been vetted by the Association (and checked and timed by me, his editor!). His principle concern was that his voice would hold out for the duration.  A slight complicating factor was his busy schedule on the day itself.
A telephone interview with a journalist from the Independent took place in the morning and we then waited for the arrival of their photographer. In the meantime we carried on as normal with shower and dressing - extra attention had to be paid to the grooming process, of course. Our cab was due to arrive at 3.00pm and time marched on, with no sign of the photographer arriving. He arrived with less than an hour to spare but wasted no time in producing a range of what I can only describe as 'pop-up' lighting equipment from a small case, rather in the style of Mary Poppins. He was pleasant but professional and in no time he had transformed our sitting room into a photographic studio with Roch as his model.
 "Look into the distance Roch", "Now to the right," "Now to the left," "Again, into the distance Roch," "Straight at the camera now..." The taxi arrived as he was setting up outside for shots at the front door but the driver waited patiently until eventually the 'shoot' was over.
The final picture appeared in the Independent's sister paper, the 'I' on Thursday 21st November. Roch looks set, determined and a little bit wide eyed and scary. But I guess that must have been what the guy was going for...as he chose it from about 500 shots.
The journalist who interviewed Roch was Sarah Morrison and she used him as a case study to back up her article on the launch of the Report. The article was accurate and well written.

"To the right, to the left, now into the distance..."

Anyway, I tried my best to encourage Roch to save his voice for Westminster. But he's such a friendly, chatty person - it was difficult. First the photographer and then the taxi driver!
Eventually we made it to Portcullis House with time to spare and met with Alison Railton, Public Affairs Manager at the MND Association. We had met before, in 2010, at the original APPG inquiry, in which Roch also took part. As always, Alison made us both feel comfortable instantly. We walked with her along corridors lined with original artwork - paintings of individual politicians past and present and huge canvases depicting Parliament in session. I could have spent longer examining the details but duty called and after a short briefing in one of the public coffee areas, it was time to make our way to the Thatcher Room - much to Roch's amusement. Had he known, he remarked, that the meeting was to take place there - well, he might have reconsidered...
 Personally, I think the Iron Lady looks equally perturbed to find herself in a photograph with Mr. Roch Maher...
 


"True Blue" meets The Main Man

Once inside, we were introduced to Chris James, Director of External Affairs at the MND Association and Dr. David Bateman, National Clinical Director for Neurology. Greg Mulholland MP, Vice-Chair of the APPG on motor neurone disease was there to chair the meeting - but warned us all that the Division bell was due to be rung at any minute - which of course would herald the departure of every MP in the room - and so it proved. Happily, the bell did not interrupt Roch's speech, which went off without a hitch. He made us all proud.
To read a report of the meeting and see some of what Roch said, use the link below, which will bring you to the appropriate MND Association website page.

With Roch, Chris James to the left of the picture, Dr. David Bateman on the right.

 

Friends, Old and New

 
The departure of the MPs (boy that bell is LOUD) left a smattering of individuals in the room present for the remainder of the meeting. I found myself taking notice of one woman in particular. She seemed familiar. There was something about her confident, decisive manner and the passion with which she spoke...
After the meeting closed, we were approached by a woman whose husband had died of MND just last February and who works in the office of one of the MPs. We spoke together for some time. It was good to talk to her but such meetings leave me with a strange mixture of feelings - MND wife meets yet another MND widow.
As we spoke, the woman I had noticed earlier came over with her companion and work colleague. I was overwhelmed with such a strong feeling of familiarity. I knew her first name was Liz - her second name? Garrood, she told me. Immediately I turned to Roch and rather rudely interrupted him in my excitement,
"Roch, it's our Liz!"
That will live in my memory as one of those golden moments, as we renewed our acquaintance with Liz Garrood.
Roch had begun his speech earlier by recounting how, after the shock of diagnosis, he had called the MND Association and within a week, they had sought him out. Their then Regional Coordinator arrived at the house to meet with us within days of his call. We will never forget her. In a time of shock and confusion, misery and grief, she brought a positivity, an energy and an empathy to our house that day. She talked to us frankly, answered all our questions directly and discussed with us the burning question of the day - how to tell our 14yr old and 17yr old that their father had MND. I remember her walking round the house with encouraging words about how much space there was to adapt. She told Roch that she was more worried about his cholesterol levels than his MND! She was the first person to make me feel that we just might be able to live with The Monkey. We never met her again, and she moved on about six months later. But we never forgot Liz Garrood. She calls herself  'The One Hit Wonder'. She now works as Care Coordinator in Hertfordshire. All I can say is, Lucky Hertfordshire!

 

Liz Garrood, left. Her colleague Anna is on the right of the picture.

 
It had been a full but tiring day for Roch but as we made our way past the oddly jovial police officers guarding the entrance to Portucullis House into the cold night air at Westminster Bridge, we had to agree - it had been an interesting day and a successful one. Well done Roch, we are so proud of you.
 

Big Ben looms behind the façade of Portcullis house

http://www.mndassociation.org/news-and-events/Features/Westminster+Launch+For+Palliative+Care+Report
 

Out and About

Selfie!

Despite the fact that Roch tires easily now, we have managed to get out and about over the last couple of months.  It felt like quite an achievement when we made it to witness James marrying his beautiful Sabrina in September. Roch looked dashing and it was an excuse for me to dress up and get the hair done. We were both looking forward to such a special occasion but for me it was just vital to make sure Roch made it. I knew how good it would feel for him to be a part of that day. So when I woke on the morning with a stinking headache, my heart sank. Not a good start. But hey we took it slowly and got ourselves all dolled up, well I got ourselves all dolled up...and we left plenty of time for the drive to Stoke Newington.  The headache nagged away all day but never crossed into migraine territory and we managed to stay until just before the dancing started. Roch was okay with leaving then and we reached home without incident, in a rosy glow of triumph. May I just say for the record that we wouldn't have had such a stress free time without Terry's help (not to mention the pleasure of his company).

There’s always some difficulty to overcome – some disaster to be averted. But that’s just it, the difficulty is always overcome and the disaster is always averted and every time it happens, it just proves that it was worth the effort made.
Take James and Sabrina’s wedding – all went well, and with the beautiful ceremony over (not a dry eye in the house) we headed out of the council chamber to take the lift back down to the ground floor. Unfortunately it wouldn’t budge! Without the lift it meant that Roch was effectively stuck several floors up with no way to exit the building in his chair. So we just had to wait until it was fixed.

So we did, and to be fair, it didn’t take them too long. But it does go to show how vulnerable wheelchair users can be to the vagaries of machinery. It didn’t feel good to watch everyone trot downstairs ahead of us. But the rest of the day passed without incident. Although there were steps into the pub where the Reception was held, by means of brute strength, and the combined efforts of the manager and the redoubtable Terry, the wheelchair with its precious cargo was lifted inside. All good. After an absolutely delicious meal, the only thing to mar the day was the best man’s speech, but the less said about that, the better!

All dolled up

Roch with Terry

 

You know, people generally come up trumps and this was proved to us again when recently, we encountered a problem at Kew Gardens. Kew has always been special for us and we picked a gorgeous day in mid-October to visit. It’s my favourite time of year and to be surrounded by the lights, the colours, the scents of Autumn in such a wonderful setting – well, it lifted my spirits.

Towards the end of the day Roch had to use the toilet. Now this is the thing he dreads when he is out and the reason why it’s difficult to arrange outings without a second helper. I don’t know about you, but we find that in public disabled facilities, the toilets are very low.  Possibly this helps some disabled people, but not Roch. The height of the toilets, combined with the diminished strength in his arms, means that he cannot stand up without assistance. I am not strong enough to lift him by myself (at home I use the hoist) and Kew’s disabled toilet facilities proved no different. So there it was, the moment he had dreaded. Stuck on a public toilet. There was no help for it, we had to pull the emergency chord. This could have been a moment of crippling indignity. However, a knock on the door brought the friendly and capable Jan to our rescue. She asked how she could help and Roch directed operations. Between us, Jan and I helped him to his feet.  Jan followed instructions, held on firmly, offering assistance with such respect, that she transformed the incident into a mere blip on the radar.  Gold star for Kew then – also just to mention that there are ramps into the exhibitions and level access to the main restaurant and shop. Disabled adults £14.50 with essential Carer admitted free.

As I say, he gets very tired and no longer objects to early bedtimes. However, we’ve both noticed a difference in his energy levels when he’s had the nippy on for a few hours. So the new routine includes nippy for a few hours every day. He’s still not keen to use it at night time but we’ll come to that, no doubt. We’ve been to a few more Brentford matches – that’s becoming more of a routine, with a few pints afterwards to round off the trip. As long as we can make it home for Strictly Come Dancing, I’m happy. (It’s called give and take, people…)