Tuesday, 29 May 2012

H Hospital

After much discussion, we discovered that going straight to Radiology is easier as we had been waiting over an hour in Ward C1. Once Rachael arrived in Radiology, and after much fuss from the nurses, Rachael was hoisted on to the xray table. After a few minutes wedges were found and placed under Rachael's back, neck and knees to try and make her as comfortable as possible. Rachael asked Dr W for extra anaesthetic gel. Dr W confirmed that this would be a like for like exchange of Tilma tube. Dr W supervised the student doctor throughout the rig change. The procedure went without a hitch and was relatively pain free.

Monday, 28 May 2012


Honoria did some basic range of motion exercises. Dan went to show the leg kicks and push offs with limited success.

Tuesday, 22 May 2012

Visit from Wheelchair Services

Mark and Craig changed Rachael's headrest for one that sits much lower down the neck and jowl. Mark replaced the armrests, but the left armrest kept catching so Rachael was unable to reach the joystick properly. Mark said he would order a different model. Mark added an assistant control panel and set it to speed 3. He then altered the buttons on the control panel as Rachael was having trouble reaching them. Mark said he would send some more Velcro through the post to be used when needed, to further adjust the switches. Mark then added a resting bracket for the control extension shelf. Rachael asked about wheelchair risers but was told that the NHS could not provide this for their wheelchairs. Rachael asked about getting a more comfortable cushion, but was told that she has the Roho cushion, which is the top of the NHS line. Mark did advise Rachael to have a look at the Pegasus rippled cushion. Craig then mentioned that the full Burnett Body Support would enable Rachael to sit in comfort on the sofa, enveloped in a bean bag. Craig advised that a full day trial was available if she wanted to investigate further. Velcro received. Next appointment made for 13/06/12.

Monday, 21 May 2012


Dan had 2 student physiotherapists with him. He showed them the basic range of motion exercises, then focused on Rachael's ankles and knees. Dan had to pop Rachael's shoulder back in place as it had dislocated again and worked on a particularly stubborn knot in Rachael's back, which he will continue to work with next week.

Sunday, 20 May 2012

Very good

Saw Fairport Convention with the amazing Chris Leslie tonight. I really enjoyed it but shed a few tears when I couldn't join in. If there was ever a musician, whose style I tried to emulate, it was he.


Still tired. Still glowing from last night

Thursday, 17 May 2012

Catheter change at TG Hospital

Rachael had been experiencing bladder spasms and asked Stuart if it could be because her catheter was blocked. Stuart said bladder spasms could be caused by a blocked catheter or by bladder irritation. Stuart said anticholinergics could be prescribed by GP to prevent bladder spasms if needed. Rachael tolerated the change but found it painful and the stoma site bled slightly. Stuart showed Rachael the catheter tube that had been removed, it was completely blocked with sediment.Stuart advised to do at least one bladder wash a week, more if needed. He also said he would see how the catheter change was at the next appointment, and if it was blocked again, he would increase frequency of changes. Stuart gave some sterile water for bladder flushes.
Rachael had one voltarol flush before leaving for the hospital, and one voltarol flush when she arrived at hospital.

Wednesday, 16 May 2012

Clinic at H Hospital

Rachael saw Kathleen (Dietician) who assessed Rachael's current feed and confirmed that despite occasional nausea, the community dietician is aware of maintaining Rachael's reviews. Kathleen looked at Rachael's rig after Rachael asked for a new rubber piece and said it could not be done. She referred Rachael to Rose (MND Specialist Nurse). Rose consulted with Sam (MND Specialist Nurse), who usually deals with rig changes for Rachael. Sam is going to phone later today with an appointment for a new tube for rig replacement - like for like. Discussed the options and decided on another tilma tube.
Bev (Speech Therapist) was keen to see Rachael's Eyeygaze and agreed that to all but those in regular, daily contact, Rachael's speech would be unintelligible. She asked about the choking and swallowing and ensured that Rachael was comfortable managing what she can/cannot eat and when. Bev discussed the merits of the cough asisst and was pleased that Rachael now has one and it is proving useful and effective. Bev also ran through a range of high and low tech communication aids. Rachael was confident that she has the best available tools for herself.
Rachael briefly saw the occupational therapist but didn't feel it was necessary to speak to her. Rachael was weighed as 153.4kg including wheelchair, which weighs 95kg.
Rachael saw Dr E, who had a colleague with him, a doctor intending to specialise in Neurology, with an interest  in MND. Discussed Rachael's history and background. Dr E confirmed that Rachael is not significantly more atrophied that at previous consultation, but noticed further deterioration in speech. He was also glad to see the Eyegaze in action. Dr E looked at Rachael's rig and hoped that the referral to radiology could bring respite from the over granulation in the stoma site. Discussed Rachael's catheter and bladder spasms. Dr E ordered a urine test and said he will contact Rachael if there is any sign of white blood cells/platelets. Rachael informed Dr E that she has a catheter change due and that she is happy with the team at TG Hospital. Rachael confirmed that she is still seeing Dr B every 2 months. Dr E was pleased that there was no noticeable deterioration in Rachael's breathing.

Friday, 4 May 2012

Orthotics Appointment at B Hospital

Rachael told Julie about her curling toes. Julie said she is going to invent an innersole ridged to straighten Rachael's toes. She noticed that Rachael's feet were very cold and put this down to poor circulation. She proposed sheep-skin boots. Julie also noticed that the tapering at the toe of Rachael's current boot is pressing against Rachael's toe. She proposed a square-toed boot. She said she would be in contact in the next couple of months to update on progress.