Monday, 30 April 2012

Emails Exchanged with Dietician

Aisling (Dietician) emailed querying about Rachael's feed and syringes. Rachael responded saying she was tolerating the feed well and mentioned she was still eating ocassionally. Rachael also said she had enough syringes to last her 4/5 months and said she would be in contact if anything changes significantly. Aisling responded saying she was glad everything was going well and said she would be in contact in the next 3 months if she has heard nothing before this.


When Rachael got in the pool, lying flat in the water, Rachael experienced a sudden sharp intense pain in her left shoulder and neck. Dan raised Rachael's left arm at a right angle to Rachael's body, in the air, and felt it click into place. The pain was instantly gone and Rachael regained a wide range of movement. Rachael had been unable to drive her wheelchair and was now able to manouvere with ease. Dan determined that Rachael had had a dislocated left shoulder and explained that this is increasingly likely with muscle atrophy. Rachael walked 8 widths and did push-offs from the wall.

Monday, 23 April 2012


When Rachael got in the pool, lying flat in the water, Rachael experience a sudden sharp intense pain in left shoulder and neck. Nothing eradicated this pain. Sharon went through full range of motion, focusing on neck and hips. Sharon discussed future sessions as Rachael's voice deteriorates and communication becomes more difficult, even than it is. Rachael currently communicates by a series of grunts and nods, but they are becoming less distinguishable from more random noises. Sharon remains confident that Rachael's eyes are expressive enough to indicate basic commands and yes/no responses. Rachael's sessions have been increased to weekly for the time being.

Monday, 16 April 2012


Sharon went through full range of motion exercises, focusing on correcting Rachael's dislocated hip! Rachael had been complaining in the week of backache, but thought it was a trapped sciatic nerve. Rachael walked 4 widths, did some upright standing exercises, wall push-offs and gentle weaving exercises to loosen arms and hip with caution.

Thursday, 12 April 2012


Dr A was very pleased with general hygiene despite difficulties accessing the full mouth. He noticed some initial chipping of an existing cracked tooth but agreed to monitor as removal could lead to extra complications of hygiene and risk of infection. He was also concerned about the danger of anaesthetic.

Respiratory Appointment at Wy Hospital

Dr B was pleased with Rachael's blood gas oximetry test and the results were improved on last time. He noticed an increase in use of Bipap but within a low range of use. He was happy for Rachael to continue using the machine sporadically, when necessary. He was pleased that Rachael is using the cough assist machine daily as that reduces the risk of infection and also that it has been helpful in emergency situations. He requested a Wednesday afternoon appointment in 2/3 months time.

Thursday, 5 April 2012

Catheter change at TG Hospital

Rachael had a catheter change in the chair again. Rachael had one voltarol flush before leaving the house and another voltarol flush once she had arrived at the hospital. Rachael seemed to tolerate the procedure well with minimal discomfort. Stuart mentioned he may be moving to Wy Hospital following a general restructure within the trust. He said he would keep Rachael updated. Rachael said she would prefer to stay with the team that she knows.

Wednesday, 4 April 2012

Travels with my ramp

Last night I went to The New Inn  in Marsden: Marsden known to CAMRA stalwarts throughout the North of England and beyond. Marsden where every other pint is a pint of Jennings and every third is from a microbrewery. What a place to be  with my 16 year old daughter and my heavy-with-child p.a. E.   
Marsden is a lovely village just beyond the Saddleworth Moors, past breathtaking views of the Coalshaw Valley, a buffer before you hit Huddersfield. We phoned The New Inn, like good little disableds, before we set off, to check access arrangements and were encouraged that "a couple of the regulars are wheelchair users". We were warned of a small step in at the front but were assured that their local motorised wheelchair user didn't find it a problem.
We arrived a little early and they don't open until 5pm on a weekday. I was not sitting, waiting for the pub to open. I've been that desperado! We had a wander and within a few hundred yards, found the Standedge Tunnel: and the Huddersfield Narrow Canal: 
So far, so refreshed. Having worked up a hunger, we headed for the pub.
The step was a stone monstrosity. Its centimetres might well have been metres for the difference it made to my little Invacare wheels. E asked the staff if there was another (hidden) entrance and they sent out a burly couple, offering to carry me. With no further ado, we fetched the portable ramp:
best £20 I ever spent on ebay!
The ambience was cosy, relaxed and inviting. The staff were hospitality itself; attentive but not intrusive, homely and welcoming but just the right side of polished professional. We were given a choice of tables and chose the accessible one. The decor was cosy/kitsch, (I hope, deliberate) the local artwork was interesting and made for a good talking point, with neat explanatory paragraphs by each piece. The menu was simple, elegant and each dish whet my appetite. I knew that at this stage I would be suffering from eyes-bigger-than-my-belly syndrome, so I had already chosen the risotto. Whilst my daughter drank her tea and my fruit juice, (cheers!) E ordered;  

  • Red pepper & spinach risotto with feta 7.50
  • whole tail scampi, fat chips, tartare sauce 7.95 
  • new inn fully loaded burger, bacon, cheese, onion rings 6.75
I paid a visit whilst I was there. It'd almost be rude not to! E asked if there was a wheelchair accessible toilet? Both the wheelchair using regulars must be men. (As well as stunt riders on that there doorstep!) After checking with a manager the bar staff directed us to the ladies, "end cubicle". E cleared the entrance. None offered to help an albeit strong but obviously >6months pregnant woman with a teetering stack of wooden high chairs. To be fair, E had been droning on all day about how strong she is but all the same... A really tight corner, some eye watering driving skills and a teensy scraping of wallpaper and we were in. The thinnest of cubicles, no bigger than a standard wardrobe, stood in a row of 3. The "end cubicle" contained 2 grab rails. E fetched a portable urinal. We are so organised, I frighten myself.
The food was delicious and beautifully presented. I will certainly revisit Marsden. I am already plotting an accessibility pub crawl. 
Good food, good company, nice views and a bit of a whinge: happy days. 
listening to: Tim Minchin - Not Perfect
reading: The Etymologicon - Mark Forsyth