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 […]
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 […]
This year is drawing to a close, and Christmas is fast approaching. Seasonal activities such as Christmas parties are in full swing and I was delighted to be able to attend Haywards Heath Golf Club’s Christmas bridge party on Monday. Bridge at HHGC is always well supported but the Christmas event, expertly organised by Bob […]
The annual Motor Neurone Disease Association Quiz Night, held this year at Haywards Heath Golf Club, was a great success, with 15 teams of six battling it out. Well done to David Wilks for setting an excellent quiz, and to the bar and kitchen staff for looking after us all so well. Our team threatened […]
On Friday 9th November, for the first time, Haywards Heath Golf Club will host the annual Motor Neurone Disease Association Quiz Night. Ironically, it is an event that Doreen and I have supported staunchly for the last 13 or 14 years. I say ironically because for most of that time we knew little about MND, […]
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 […]
One disadvantage of participation in the MND medical trial is the regular verbal assessments, designed to help the researchers monitor progress of the disease. As a consequence, I am regularly reminded of my probable future by questions such as: Can you still cut up your own food? Are you having any difficulty swallowing? Do you […]
First of all, some good news: I now have my corrected ‘Blue Badge’, this time with my photo on it. The new badge was issued without charge, but despite the promise that it would be delivered direct to my home, it still had to be collected from the library. And it only took 16 weeks! […]
A recurring theme in these blogs is the amazing support and helpfulness of other people, and on that subject it’s time I gave a special mention to NHS staff. That includes those in both Neurology and Physiotherapy at the Princess Royal Hospital, clinical trial staff at the Royal Sussex Hospital, and the MND nurse who […]
In earlier blogs, I wrote about some of the physical effects of MND, particularly the continued deterioration in the use of my legs and, more recently, my hands. What I haven’t described is the chronic fatigue and the muscle cramps that also come with MND. Initially, I ascribed the fatigue, like my other early symptoms, […]