Here we are last night at the Dublin Castle in Camden. How long since we've been to a 'gig'? I really can't remember. In the last two weeks, we've managed one party and a gig in Camden. I'm really proud of us. Bit of a mammoth journey yesterday and we hit so much traffic on the way it was unbelievable. But we got there in the end. People are amazing. When we arrived, Roch in the wheelchair, we faced a couple of steps into the building. But I've learned that you can rely on the kindness of strangers and if you ask, people are happy to help. Roch can still stand, he just can't lift his feet very well, so he put his arms around two strong young lads who, with the greatest of respect and good humour, assisted him inside. Once in the venue room, we were greeted warmly by Sonja (glamorous in green above), James, Kate and John G. I felt at home at once. The lovely Carolyn had journeyed with us (many thanks for all the encouragement as I negotiated the traffic Carolyn) and we had such a good time together. It proved to us that we can do it. We can still get out and have fun. We were there to hear the Deaf Offenders play (Deaf Offender Terry also in the pic above (I'm wearing his hat), but sadly missed most of their act (Goddarn it!). We stayed for the next band and for a time after that - but unfortunately the Dublin Castle let us down, as the toilets were downstairs, down lots of stairs in fact - so we left early, having kept a weather eye on the liquid consumption. The trusty Lenor bottle came in handy yet again as we drove down the Westway into Shepherd's Bush. How handy was that?
It was like old times when we got home. Post-gig pangs of hunger hit and we headed out again for a kebab (Roch) and burger (me)! That's what I call a good night out.
Brilliant ! Sounds like a wonderful night out was had by all .
ReplyDeleteLife is an adventure when you are living with MND and you constantly have to look for solutions to make life work so that you can keep enjoying yourself. We live each day as it comes and try to make it a good one. On Sunday we delivered Rob's Quingo Scooter to an address in SE17 as sadly it is a bit too much for him to steer it now and we have reverted to the electric wheelchair. The process of driving through London was hair raising for me to say the least, and having delivered it we stopped off on the way home in Spitalfields for brunch. This was my bright idea having looked on the internet for somewhere inspiring that appeared wheelchair friendly. I had not bargained on the floor shudderingly loud music or the fact that the loos were on the first floor. Rob decided to take the lift and walk to the loo, only 16 paces or so but enough to leave him bent over and gasping for breath. I was meanwhile paying the bill and knotted with anxiety about whether he would be ok on his own. I left the transit chair in the car as it was so crowded, but you cannot always foresee every problem. Still we both enjoyed our pancakes and maple syrup and it was an adventure.
ReplyDeleteKeep doing things Deirdre, there is always a way. We have been on two cruises, a trip to Portugal complete with scooter and a trip to Spain in the last 16 months. We are not going to go abroad any more now, but we are off to Norfolk this weekend. I have found a converted barn all on one level with a double shower that I think we can manage in. They are even putting a ramp up to the front door especially for us.
Hi Deirdre
ReplyDeleteI re-read your blogs again tonight and after chatting with Rob, I realise that so many of your experiences have also been ours. We have had problems with bowel control, problems with trousers, we have an NHS wheelchair and Rob is now using a BiPap Machine, and we also have a WAV on Motability (which is brilliant). Having been through quite a traumatic week getting Rob issued with his Nippy we would hate that to happen to anyone else - it sounds however as though your hospital is much more proactive. I can report that it does indeed greatly improve quality of life and is our best friend. It comes on holiday with us, we take it out in the car (just in case) and basically it's a life saver. The onset of CO2 poisoning was so gradual and happened over quite a long period of time that neither of us was able to differentiate the symptoms it throws up from the myriad of discomforts that MND provides in the course of normal life. When it was pointed out afterwards we felt really stupid, but it happened whilst we were transferring care from a local hospital down to the London Neurological Hospital in Queen Sq. Nobody checked his breathing and it eventually became acute and necessitated a week in hospital, which could have easily been prevented.
If there is anything you want to ask me, feel free to email me on srclough@btinternet.com
I am packing the car now to go away tomorrow - much more stuff than for a baby or normal size family!
Regards
Sue