So last week we had a visit from the Roehampton Wheelchair Service. If Roch passes his driving test (!) he will have a motorised wheelchair. This is great news. The idea is that Roch will then be able to venture out alone (but just locally, as we won't be able to put this wheelchair in the car). I think this will be daunting for him at first but I hope it will mean he will feel a little less dependent. His sister Laura and her husband Dan came to visit last week, too. She told me that she found Roch better than she expected, but was startled to realise that he really cannot leave the house alone. She said she hadn't thought about it, but found it sad that he can't just pop out for the paper or a pint of milk any more. Maybe, when he gets used to the motorised wheelchair, he'll feel able to do this. I hope so.
We attended an appointment this week which Roch had been dreading. If I tell you that it was at the Bladder and Bowel Clinic at Teddington Memorial Hospital, you'll understand why. You'll know from previous posts that Roch has had problems on and off for over a year with sudden bouts of bowel urgency. It's a huge anxiety for him and actually prevents him from going out at times. There's a real fear that it will come upon him in public and he won't make it to a toilet on time. His mobility is so much less and it's more difficult for him to undo his trousers quickly (this is a separate issue which we are looking at, too). The GP prescribed imodium but he can't keep taking this all the time. So an appointment was arranged with an Continence nurse. When we arrived at the hospital, we approached the Receptionist on the ground floor and had a classic sitcom moment - we asked her where we would find the 'Bladder and Bowel Clinic' and of course she didn't hear what we said so we had to repeat it, loudly! Somewhat abashed, we followed her instructions to find the lift and found ourselves alone on the First Floor with no visible sign to direct us. I left him in the waiting area and went exploring. There was a sign along the corridor at the top of the stairs, so any able bodied person looking for the clinic, who had reached the First Floor by using the stairs would know where to go. But there was no sign outside the lift. We waited and eventually the Continence Nurse came to us.
Beforehand I knew him to be anxious, embarrassed and braced to feel shamed but none of his fears were realised. To Tiz, the nurse in question, I'm sure it was all in a day's work. For us, she was a miracle. We spent a long time with her and she was professional, matter of fact and understanding. It was easy to trust her. We had an interesting conversation about how in this country everyone is embarrassed by the word 'bottom' and she can't understand it. She's Italian and she says that in Italy, it's viewed simply as part of the anatomy and bowel movements are a fact of life. So refreshing. No need for any embarrassment.
Now we have several strategies to pursue in turn, beginning with attempting to initiate a routine so that Roch can control bowel movement using suppositories and diet. We start with glycerine suppositories for two weeks, and then use more powerful laxative suppositories if they don't work. We will do that for a month. The idea is to plan bowel movements so that they are over and done with in advance of any major outing. While we still can, we have to get our lives back so that we can do things, get out, get away. What a shame that what is preventing us so often is not motor neurone disease itself, which will eventually take away any choice about going anywhere, but this bowel movement problem. It's presence is due probably to a number of factors, including medication but is definitely exacerbated by Roch's anxiety around the issue.
Tiz is mindful of Roch's dignity. Pads were mentioned as a last resort and we hope it won't come to that. This was an eventuality he had sadly considered himself. When I saw 'nappies' on his list of questions to ask, I was aghast. This, surely is not what he will be reduced to - not at this point, at least. But Tiz is going to do her best to make sure this won't be a necessary option and we will work hard with her on it.
If the new regime doesn't work, we will be instructed in the art of Anal Irrigation!! Basically, clean him out and get him out! We'll try anything to make sure we can enjoy life while we can.