It is now over 6 months since my diagnosis of MND was confirmed, and more than two years since I noticed the first symptoms. Time moves on and, due to MND, so must I.
Three years ago, Doreen and I, both having retired, decided to ‘down-size’, selling our house in Cuckfield, buying a smaller house there, and using the surplus cash to buy a second home in Nottingham. Why Nottingham? It is the city I grew up in, and my sister and her family still live there, but so too does our daughter, her husband, and our two grandchildren.
Since then, we have oscillated between the two houses, enjoying the much more frequent contact with the family, and with old friends in the area, not to mention the joy of regularly watching Nottingham Forest and Nottinghamshire County Cricket Club. Meanwhile, in Cuckfield, we maintained our local friendships while I continued my active memberships of Haywards Heath Golf Club, Cuckfield Tennis Club, the Sussex Piscatorial Society, and several local bridge clubs.
Sadly, MND has changed all that. The regular four hour drive each way, to and from Nottingham, was acceptable when Doreen and I could share the driving, but it will be too much for her when I can’t drive safely any more. We really had to choose just one location, and as I can no longer play golf or tennis, and my fishing is severely curtailed, it became a straight choice between friends in Sussex, or family in Nottingham. I have been overwhelmed by the fantastic support I’ve had from friends in Sussex, but being closer to family support had to be our first choice.
Our house in Nottingham was a 3-storey town-house with far too many stairs to be adaptable for life in a wheelchair, so we have sold it and bought a dormer bungalow there. We are now trying to sell our Cuckfield house but it will probably be at least 3 months before we finally leave Sussex. After 18+ years in Cuckfield, we’ll be very sad to say goodbye, but we must.
Moving house is something we have done many times during our marriage, thanks mainly to my career, to the extent that Doreen became almost a ‘move-aholic’. We lived in one house for only 6 weeks before putting it back on the market. The previous owners of our new bungalow had a ship’s bell fixed to the stair post, which they decided to leave. Our 4-year-old grandson thought this was wonderful and devised a game where I was supposed to go to sleep in my chair (which can actually happen occasionally!) and he would ring the bell to wake me up, to my pretend protest and his great glee. As with most 4-year-old’s games, we had to repeat this many times before he tired of it. Our daughter had expressed interest in taking the bell for her own house. Now she’s not so sure!
Physically, I continue to deteriorate slowly. While I’m still walking, I am increasingly unsteady, relying more and more on my stick. When leaving West Sussex Bridge Club recently, I tripped in the car park, and couldn’t stop myself falling heavily. Once on the ground, I can’t get up again without something fixed I can use to push/pull myself upright with my arms. Fortunately, several members of the bridge club rushed to my aid and lifted me back to my feet; no easy task as I weigh over 16 stones!! Fortunately, apart from a bruised elbow, the only damage was to my pride and dignity!
I’ve noticed lately that I’m becoming breathless much more easily. That might just be lack of fitness as I am unable to exercise, or it could be the MND affecting my chest muscles and diaphragm. Tests by the MND nurse show that I’m still well oxygenated (97%), so hopefully it is just a lack of fitness. Meanwhile, we soldier on, with grateful thanks for the help and support from so many people.