February has continued much like January with a steady stream of visitors to our house in Nottingham. The NHS Community Neurology team sent their MND Nurse specialist to introduce herself; she will be my first point of contact if there are any problems between the quarterly clinics. Their OT also came to assess what minor home adaptations might be helpful to me, while Notts County Council sent their OT too, to assess more major adaptations to the house such as ramps for wheelchair access. We are now in a cycle of deliveries, set-up, and follow-up visits. All very impressive but it does emphasise the feeling that having MND is a full-time occupation!
February brings with it something of a milestone. According to my MND ‘bible’, median life expectancy for people with MND is 2½ years from onset of the disease. It is 2½ years since I first noticed something amiss when Doreen and I were at the Edinburgh Festival in August 2016. It is chilling to think that half those people who were also noticing their first symptoms at that time are no longer with us.
Late January posed something of a challenge in the form of the flu-like virus that was going around. I avoided it for a while but eventually succumbed. The virus soon developed into a bad cough which I struggled to throw off. Persistent coughing made it impossible to use the new ventilator at night and prevented me getting much sleep for quite a while. With MND now affecting my breathing, the additional strain of the virus was particularly debilitating. The good news is that I’ve since learned to sleep wearing the ventilator, and seem to sleep better and longer when using it.
Doreen and I went along this month to our first meeting of the MND Association’s Nottinghamshire Branch. Like their Sussex equivalents, they were a lovely caring group of people. They organised a revolving discussion session (like speed dating I’m told) where I met and talked to lots of new people. Mostly it was the carers who moved around, while those with MND stayed in one place, so I heard quite a few stories from the point of view of the husband/wife/partner of someone with MND. Right at the end, though, I was joined by two other men, both with MND. It turned out we’d all been diagnosed last year, within a few month of each other so it was interesting to compare notes. What we all agreed on was the chronic fatigue that comes with MND. Overall, Doreen and I were impressed by the incredibly positive attitude of everyone there.
When we first arrived at the meeting, the organiser seated us with another ‘new’ couple, attending their first MNDA meeting. We chatted to them over a cup of tea to find out that Roy was just getting over cancer when he was diagnosed with MND late last year. And his wife, Anne, has just been diagnosed with breast cancer so will have to have surgery. No matter how bad things are, there is always someone worse off than you.
Still no sign of a buyer for the house in Cuckfield, but our son, Adam has moved in and will stay there for the next six months, or until the house is sold if earlier. It means a daily commute up to London for him but he’s enjoying having the place to himself (when we’re not there!), and it’s good to have it lived in.
One very recent addition to my life is my new red mobility scooter. My brother-in-law’s mother can no longer use it so he has lent it to me for as long as I need it. I have to confess it’s not quite as nippy as my old Suzuki GS850, or as stylish as my Jag XKR, but it will make it easier to get round to the pub!