JB Progress

Sandie drove me in the WAV to Reading last Monday 23rd December for an appointment at the respiratory clinic in the Royal Berks hospital. We got up at 6am, so as to get into town early, parked in the Oracle and had breakfast at Cote Brasserie.  We then walked and rolled to RBH and found the right waiting area. While waiting, I was asked my a smiley nurse for my weight, then a little later for my height. Then they wanted to measure my arm span. All rather odd, I thought, for breathing tests. I later realised that these measurements can be used to calculate lung capacity. Then we went into a room with a breathing machine, where I did everything imaginable and more with a tube that you clamp your lips over. How much air can you blow out?  What pressure can you exert, sucking or blowing? And so on. The strangest was being asked to draw in a mixture of air, helium and carbon monoxide and hold it in for 8 seconds. The upshot is that my l...

MND has reached its tentacles into my neck muscles, causing my head to droop forward. This is a common thing to happen to people living with MND. My first move was to buy a Head Up Collar, that was designed by Sheffield University, now made by  https://www.talarmade.com/products/headup-collar/ You get a velcro collar, shaped like a snood, and a kit of 20 or so plastic shapes, which you stick on the collar to provide support where needed. I later found out from health professionals that this device is not that popular with users and my experience confirmed that. It is complicated to customise and not that comfortable. But better than nothing. I then found that using the power wheelchair with backrest tilted backwards helped the floppy head no end. Then, fitting the headrest to it, with an attached elasticated band round my forehead, found it works very well. So I have stopped using my manual wheelchair in favour of the power one. The photo below shows the HeadUp Collar fi...

I now have a ceiling hoist installed in the bedroom. It's a Handimove hoist that goes anywhere in the bedroom. You can watch videos of it in operation https://www.handimove.com/products/ceiling-motor/ It uses a gadget called a Body Support that holds you firmly, avoiding the need for a sling. So it's quicker and easier to get into or out of. It has two large hooks that go under your thighs and two pads that grasp you round your chest. Here's a photo of it, showing the hoist motor above it. Over a couple of weeks, we've worked out workflows for the main operations: Getting out of bed and dressed Getting undressed and into bed Doing a loo run  It's quicker and easier than doing transfers with a board. It makes life easier for Sandie, particularly with awkward operations like getting trousers on and off. It works well in conjunction with the hospital bed. It's now in use several times each day.

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...

There is a promising treatment for genetic mutations like mine, called an Antisense Oligo Nucleotide (ASO) . It's a piece of artificial DNA that suppresses the adverse action of a mutated gene.  Two firms in the USA (Ionis and Biogen) have produced an ASO that is designed to tackle the C9orf72 mutation that is the cause of my MND. There are early clinical trials running all over the world, with three centres in the UK: Sheffield, King's College and UCL. With support from the MND Unit at the John Radcliffe, I have been angling to get on one of these trials. I was referred to Kings College, but heard nothing, then recently to the National Hospital for Neurology, part of UCL. Yesterday I received a phone call from the lead investigator for the trial at the National Hospital for Neurology. He would like me to join Cohort 4 in their Phase 1 trial, subject to being assessed against their entry criteria. They are running 6 cohorts with 8 people in eac...

My MND has progressed in subtle ways, causing changes to lifestyle. I found I could no longer get into bed on my own, since as fast as I got one leg on board, the other fell out. More recently, I’ve not been able to get out of bed on my own, either. So Sandie is now helping me at each end of the day, getting in and out of bed and also getting dressed and undressed, as it takes ages to do those things myself, most awkward being to get trousers on. I can still get into and out of my car by myself and drive. 

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'...