JB Progress

In early September we spent a week in an adapted bungalow in Braunton, near Barnstaple:  www.phoenixholidayretreat.co.uk The bungalow belongs to a pair who run a small care-at-home business, both called Carol.  It was very well equipped with hospital bed, shower chair and a couple of hoists. It also had a power wheelchair and a new looking scooter. www.phoenixcareathome.co.uk/ Carol was there to meet us and showed us round. She and her husband were most helpful during the week. They fastened the grab rail on the hospital bed more securely and fitted a new battery on the power wheelchair. On the first day, a Sunday, we headed for the small town centre in my manual chair, Sandie helping me to propel it. We found it hard work, with awkward pavement cambers and steep drop downs. A kind gentleman got out of his car to help over a bad patch. Once there I sat in the sun while Sandie explored and shopped. Once home, Carol gave us a lesson in using the hois...

The pending arrival of my brother Fred and his Canadian wife Sarah from Grand Cayman, where they live, triggered plans for a family weekend to welcome them. We decided it would need to be at my and Sandie's houses, so as to accommodate my needs. Sandie nobly rose to the challenge of doing the catering for about a dozen people. We sourced much of the food from local businesses, such as Green's in Pangbourne and West Berks brewery. Things started with the arrival of my sister Maggie on Thursday 8th August to help with preparations. The plan was breakfasts for all in my house under her supervision, with lunches and dinners at Sandie's. On the Saturday afternoon Jim and Sarah's plane landed at Gatwick from Spain, where they'd spent a week. Most of my five siblings and some of their partners arrived on Saturday and enjoyed dinner at Sandie's. Final arrivals on Sunday completed the assembly. We enjoyed a splendid buffet lunch in Sandie's garden. Here'...

Back home after a fine time at the annual Abbey Dore singing week. See: https://www.englishchoralexperience.co.uk/ Sandie and I stayed at a converted bungalow in nearby Grosmont, which had the necessary equipment. We have attended the annual singing week for about 10 years. Last year I was walking with the support of a rollator. This year by wheelchair. The main issue was getting into the abbey in a wheelchair, as it involved descents by ramps, the first of which was particularly long and steep.I was far from sure that it was feasible, but the conductor, Paul Spicer, took me down backwards with skill. By the end of the week I had 4 able pilots plus willing assistants. Six passages of the ramps were needed each day, 3 up and 3 down. My singing voice has been failing me, mainly in the upper registers, so I was an observer rather than a singer. I attended all the rehearsals and enjoyed them nonetheless. One hears more out in front of the choir as compared to being in the body of...

On Thursday 23rd May we did a trip to Lambeth Palace and back, as part of the small St Bartholomew's choir in Lower Basildon. The occasion was the 50th anniversary of the Churches Conservation Trust, who look after and conserve 350 'at risk' churches  https://www.visitchurches.org.uk/ Members of the Trust had visited St Bartholomew's last year when we sang in an evensong there. Apparently we are the only functioning choir in all their churches, which is why we were invited to the 50th anniversary bash. Lambeth Palace is the seat of the Archbishop of Canterbury. He however was not in evidence!   https://www.archbishopofcanterbury.org/lambeth-palace/visit-lambeth-palace The Benbow sisters were the organisers and booked a special coach with a built in wheelchair lift, so that I could come. The coach turned out to be brand new and the lift most efficient. Once in, I was clamped to tracking in the floor. Here is a video of me descending from the coach on...

We recently returned home after an enjoyable week's cruise in the Sapphire Princess, starting at Southampton and taking in Copenhagen, Skagen and Oslo. It should have included Zeebrugge, but Storm Hannah was in the offing around the time we were due to leave Southampton, so departure was delayed to let it pass. We went with a couple we are friendly with, making a foursome. We booked an accessible cabin which had extra space, internal ramps and wide doorways. I hired a hospital bed, a small power chair and a loo seat raiser.  I took my own manual wheelchair. We'd booked a wheelchair excursion in Copenhagen and were surprised to find ourselves the only couple in a moderate sized coach with a tail lift, so we had the services of a guide and driver entirely to ourselves. The trip amplified what we'd found out when we visited Copenhagen last year.  The power wheelchair wouldn't charge, but a phone call revealed that it needed 240V, even though the charger ...

Friday 22nd March 2019 marked one year since I was diagnosed with MND. We marked it with 3 days staying in Sidmouth. Here is a video of me rolling through the Byes, which run alongside the River Sid. Here is a selfie of Sandie and me: This blog entry also marks the point at which I started to use the wheelchair for indoor as well as outdoor use. An involuntary giving way of the knees in my bedroom late one evening has triggered this, as I found I was unable to rise from the floor by my own efforts and had to phone a strong neighbour to lift me on to the bed. The wheelchair is safer, as one cannot fall; and now faster than using a rollator. I can't afford to allow myself to slump to the ground if I cannot then pull myself back on to my feet. I started the past year walking without any supports; moving to using one, then two sticks. That period was followed by many months using rollators, which has only just ended.  

We visited Sidmouth for three days, earlier this week, staying at the Victoria Hotel which was old fashioned but very friendly and helpful.  We were at the younger end of the clientele, who were brandishing plenty of sticks and rollators. We had a pleasant time exploring the town. I did a couple of wheelchair runs along the promenade and into the town, all good practice at negotiating the various challenges and obstacles. We liked the Connaught Gardens at the western end of town, which has won any number of awards, and which has a fine cafe and cakery in the Clock Tower.

Sandie and I did a cruise to Norway at the beginning of July in the P&O Arcadia, 2,000 passengers and 800 crew.  It was our first such cruise and we both thoroughly enjoyed it. Most passengers were able-bodied, but there were enough with mobility problems of one sort or another so that I wasn't in the least unusual, nor would be in the future.  We sailed from Southampton and visited first Stavanger, then minor ports at the head of the two longest fjords, finishing at Haugesund before returning to Southampton.

On Friday 25th May Grahame, a local choir member, kindly took me for a day sail on his 49 foot cutter, Sentosa, a beautiful boat. He drove me to her motoring in Haslar Marina, Gosport in his 5 litre open top Jaguar. Getting aboard and trying to move around the boat brought home just how weak my legs have become. I was fine, sitting or standing behind the wheel, but any further movement needed a lot of care. Going below down a steep companionway ladder looked out of the question, so remained unattempted. Thankfully it was a fine day with hardly any wind, so we motored over to Cowes for lunch and back. It was an enjoyable day and lovely to be out on the water.