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MND Life

15. A final farewell to Sussex

A very busy March saw us finally living full time in Nottingham.  Our Cuckfield house remains unsold, but we have had several viewings recently so perhaps the market is picking up.  The move to Nottingham went well but we still have a few boxes to empty in the house, and I haven’t even started on all the boxes of ‘stuff’ from the garage. 

March saw further examples of the kindness and generosity of people.  The bridge players at Haywards Heath Golf Club gave me a wonderful send-off, asking me to present the prizes to the winners of the annual teams’ bridge league.  They have renamed the trophy “The David Shore Shield” which is an incredible honour. The group also held a collection and presented me with a personal gift plus a cheque for £260 made out to MNDA.

The Nottingham Scottish Association held a sponsored walk on behalf of MNDA. Organised by my sister and brother-in-law, Kate & Dave Potter, a dozen intrepid walkers braved gale force winds and driving rain to complete the challenge, raising a mammoth £750 from their sponsorship.

Kate & Dave hosted a family meal for 14 at their house last weekend.  As well as some wine, we decided to take them a present.  Doreen went out searching and perturbed me by saying she’d bought them a Chameleon.  I didn’t like to criticise but wondered if they would really appreciate a pet lizard? Only later did I discover she’d bought a Camellia. Must get my hearing aids serviced!

The programme of household visits and adaptations continues.  The NHS physiotherapist from the Community Neurology team came, recommending some light exercises to improve posture and help my breathing. We have also had a second visit by the specialist contractor bidding to install a wheelchair access ramp to our back door.  I do now have a folding wheelchair which will fit in the back of the car and hopefully help me get to events such as cricket at Trent Bridge. Another enforced adaptation is a ‘new’ car.  I have been really struggling recently to climb out of our standard-height car, so something with a higher seating position was becoming an urgent priority. 

My physical deterioration continues, slowly but steadily.  I am still walking but not easily.  Just standing still for any period is difficult as, although my sense of balance is unaffected, my weakened lower leg muscles struggle to hold me steady.  My breathing is also getting worse so I become breathless more easily.

I’ve noticed further deterioration in my hands. The grip is still quite good but fine movements with the fingers are impossible so I do keep dropping things.  Picking anything up off the floor from a standing position is really difficult unless it can be easily grabbed in a single flowing movement. Doreen is becoming accustomed to a shouted, “Can you come and pick this up for me please?”

The house move led to one unexpected problem.  There is nowhere suitable in the new house to put the 72-bottle wine rack I installed in the ‘wine cellar’ (aka the under-stairs cupboard) in Cuckfield, so I’d been slowly running down stocks, but quite a few bottles still came with us to Nottingham.  Many of them are ‘better’ wines that I’ve been hanging onto for years for a special occasion, and they have traditional corks so need to be stored lying down, but I don’t have room.  So we are just having to drink them!  Sunday evening’s relatively modest meal of grilled steak with salad (and just a few chips) was accompanied by a bottle of 1990 Chateauneuf-Du-Pape.  Tonight it’s pizza, perhaps with a 1993 Nuits-Saint-Georges?  Or maybe a Margaux?  Life is hard!!