The new year began with a chest infection for Roch. Lucky we had our emergency supply of antibiotics on standby and once again, we nipped it in the bud before he could get really ill, although he was quite unwell for some days and it took a while for him to recover fully. I didn’t want to diagnose and dose him myself so as advised at the time the tablets were prescribed, I called our District Nursing Team. It was just after the New Year and they were very busy and told me to call the GP, but the line was busy and I couldn’t get through, so I called NHS 111. I spoke to a clinician who asked lots of questions and eventually advised me not to give him the antibiotics as Roch had said the cough was dry, although he had a slight temperature.
I didn’t argue with her although her advice to me at the end of the call was so patronising and demonstrated clearly that she did not have a clue about MND.
From my recollection: “What you’ll do now with the antibiotics you have is - you’ll give them back to your pharmacist and call your GP as and when you need an appointment.” You stupid woman, I thought. Now I don’t trust any of your advice. Later that night, when Roch tried to cough and (hurray!) managed to bring up some suspicious matter, I decided to give him the antibiotic. Next day I called the GP to let her know I had started him on antibiotics as he had a chest infection. She was fine with it. Some days later our lovely District Nurse Fiona advised that next time - if there’s a temperature and a cough, just do it. I will.
All the Consultants we have seen recently - Dr. Matthew Hind at the Brompton, Professor Al Chalabi at King’s College and Dr. Burman at King’s College - have asked if we have an emergency supply of antibiotics on hand.
Parnika, Roch’s dietitian visited last week and brought a weighing contraption with her. This was fixed to the hoist and together we weighed him. Not sure how accurate it was, but he has certainly lost weight. He was 68.3kg in July and now he’s 63.3kg. This means more regular supplemental feeding and careful calorie counting. We’ve got to build him up. I think it’s been a gradual loss - he often has little appetite and stubbornly refuses the supplements. But he probably lost some weight when he had the chest infection. We are all busy stuffing him now.
January saw Team Roch grow and now, by George, I think we’ve got it! Marianna (who worked with us for a time when Jenny left) is back with us and will do two nights a week, Amelia will do her three days when I am at work and the wonderful Agnieszka has joined us - she and our good friend Carolyn will pick up the rest of the shifts.
Both Roch and I were delighted when Carolyn offered to help. She saved my sanity before Christmas when she said she would come in for a day here and there to give me (and Amelia) a break as Amelia was trying very hard to be there for us - not just when I was at work, but on other days, too, so that I would have an opportunity to be 'off duty'.
|Welcome to Carolyn!|
It’s always lovely to see Carolyn at the door - her presence is so bright and cheerful and she has such a lovely sense of fun. As some of you know, Roch worked with Carolyn back in the day and it’s great for him to chat to her about work and catch up on news and the world of housing.
A Little about Agnieszka
|Agnieszka - the newest member of Team Roch|