January has seen a flurry of medical activity. Some of it was as a result of registering with a new GP and dentist in Nottingham; most, however, was related to MND. I’ve been for a routine MND clinic at Nottingham’s Queens Medical Centre (QMC), a monthly visit to Brighton for the clinical drug trial, and the second and final MRI scan at Sussex University in a research study related to the drug trial.
The ‘routine’ QMC visit had been brought forward from March as they had received the results of the sleep study carried out in early December. It revealed that I had low blood oxygen levels when in deep sleep, pointing to MND-induced weakness in the diaphragm. Apparently we rely entirely on the diaphragm for breathing when we enter into deep sleep. My brain would register the low oxygen levels and trigger an internal alarm to wake me up and restore normal breathing.
Poor quality sleep exacerbates the fatigue which already accompanies MND, so the QMC issued me with a ventilator, to be worn at night, which supplements normal breathing. In theory, I should now sleep longer and deeper, and awake feeling refreshed. In practice, I’m struggling to sleep at all wearing the ventilator so the effects at present are entirely negative!! (But I’m sure I’ll get used to it…eventually.)
The MRI scan at Sussex University was a bit of a disaster. The study involves nearly an hour in the scanner. The first scan, last April, was no problem. Nine months on, as a result of the weakened diaphragm, I have been getting increasingly breathless when lying flat. In bed, I lie on my side and the breathlessness gradually subsides. In the MRI scanner, flat on my back, I was struggling to breathe, but I was there, so I gave it a go. After what seemed like a long time, my back was killing me and exacerbating the breathing difficulties. I needed a break. When I found out I’d only completed 15 minutes, feeling exhausted, and still panting, I decided I couldn’t continue. The medical team were very sympathetic and understanding but I still felt like I’d let them down.
As well as the hospital visits, various community support teams in Nottingham have sprung into action. I’ve been visited at home by NHS Community Neurology and the Home Ventilation Nurse, and have dates in the diary for further visits. Also in the diary is an assessment visit by Notts CC Occupational Therapy team to look at home adaptations such as grab rails and ramps. Having MND seems to be a full-time occupation!
Still no sign of a buyer for our Cuckfield house. Activity would normally pick up after Christmas. We have had just one viewing in January. We are told the viewer liked it but he still has to sell his house anyway, so not much help.
We had another mini crisis recently. We bought an unfamiliar type of red wine box from one of our local shops in Nottingham, which I had to open (I always take my medication around 6:30pm and I find it goes down best with red wine). Despite my failing fingers, I managed to open the box and set it all up, but then, horror of horrors, I couldn’t operate the valve to dispense the wine. Thank goodness Doreen was at hand to do the necessary. It does mean, though, that I’ll have to ask her every time I want a glass of wine, and she’ll be better able to monitor my consumption!