Taking a few minutes before I enter the next stage of dinner preparations to wish everyone a Very Happy Easter. So far it's been a lovely day here. Kate, Tom and I went to Easter Sunday Mass this morning, which felt lovely and reminded me of a Greater love. I don't talk about it much, but it's good to be reminded that we do not face life alone. I could mention footprints here but it might just be too cheesy...
The Easter eggs have been produced, the daffodils are a cheerful presence on the table, the leg of lamb is cooking nicely - and we wait in anticipation of an Arsenal win over City later this afternoon.
So, back to blogging then and staying in contact with the outside world.
I have had a number of enquiries and a few complaints (!) so apologies to all and just to confirm, Roch is very much alive and as well as can be expected!
Still working (work update in separate post to come), having more difficulty raising himself from a sitting position as his arms are feeling weaker, no problems with swallowing or breathing as yet, although he does use straws now as raising a mug or glass can be problematic. His walking is really confined to around the house using the rollator, at my and Tom’s insistence, as he is very slow and unsteady now. Outside, it’s the rollator to the car, and then the wheelchair, although in work, he still uses the rollator.
We have had the toilet seat raised (and what a great job they did, too) as it was too low. The shower seat now needs to be raised too, although most days he can manage to stand up alone.
No lithium any more, of course, but he’s back on the baclofen, a low dose, to control spacicity, which he is experiencing sporadically in his arms and hands. Unfortunately, one of the side effects of baclofen is muscle weakness, which is just what you need when you’ve got MND - more muscle weakness! He is frail physically, but he’s still strong in mind and heart and insists on doing as much as he can for himself. His bravery is astounding to me.
Last month we attended the local MND Branch meeting. I can honestly say that we enjoyed ourselves! We felt the usual reluctance to go, as it does require some considerable emotional effort but we were determined to make it, as we’ve missed the last two gatherings. We had a warm welcome back and it was good to see the familiar faces - and some new ones. The guest speaker was Dr. Brian Dickie, Head of Research at the MND Association. You could have heard a pin drop. His presentation was easy to understand and absolutely compelling. Just the right mixture of realism and cautious optimism.
Above is a link to the MND research blog page, where Dr. Dickie talks about the disappointing results of the lithium trial, for those of you who may be interested.
One new initiative for the Branch is a new carers’ support group, which is in the early planning stages at present, but will hopefully be up and running in the next few months.
We recently met up with another person living with MND and his wife. They came to the house for coffee and a chat and then we all went for a pub lunch. We had a good time and a bit of a laugh. I hope they found it helpful to spend time with us. We certainly learned from them. Both men seemed relieved and happy to find that the other could still stand, neither confined to a wheelchair just yet.
Steve’s hands have been the first things to go, and so Elaine cuts up his food and feeds him now. She performs this task with great efficiency and good humour, explaining how she has had to adapt to Steve’s preferred method of eating i.e. spearing a little bit of everything on the fork, for each mouthful when she feeds him, she herself preferring to work her way methodically through each item on her plate. She negotiates easily between mouthfuls of her lunch and lifting the food (ham, egg, chips) to her husband’s mouth. I was impressed, but then, Elaine is a very capable and practical person. Steve continued to chat between mouthfuls, unfazed and unembarrassed.
I thought it might be difficult for Roch to watch this, with one eye to the future, but I think it helped him to see how naturally and easily this couple had adapted to the change. I hope we can do as well when the time comes.
When we parted, there was what we could only describe as a hilarious moment (hilarity shared by the two persons living with MND, I hasten to add) as Elaine and I watched our two MND husbands attempt to shake hands! This simplest and friendliest of gestures has become a massive effort to achieve, and I’m afraid it was too much for me and Elaine to watch without dissolving into giggles on the High Street! Well, sometimes you just have to laugh.
Back to Easter Day dinner preparations and an Arsenal victory!!