Thursday, 20 December 2012

Appointment with phlebotomist at W Medical Centre

Rachael attended her appointment at W Medical Centre for her liver function test which was carried out by C.

Tuesday, 18 December 2012

Catheter change at Wy Hospital

As S will not be set up in his new department until sometime in the New Year, he carried out Rachael's catheter change in his small, cramped office so that Rachael would not be left without a catheter change over Christmas.
S changed Rachael's catheter, there was still some cuffing. S said that the Solution R seemed to be beneficial, though there was still some grit in the end of the tube. 
S will phone Rachael to make a new appointment, he is hoping to be in the new department by then.
Rachael experienced bladder spasms later on in the evening, but the discomfort was no worse than it usually is.

Monday, 17 December 2012


The Session Supervisor, M, was on his own today, therefore Rachael's session was very short.
M did not pay any attention to Rachael as she was being lowered into the pool and consequently allowed her to slip off the chair, causing her to land face down in the water.
M gave Rachael a neck massage but struggled to do anything more as he had no assistance and was not confident with keeping Rachael in a comfortable position.

Thursday, 13 December 2012

Visit from GP

Rachael's GP visited her today to carry out a routine cervical smear test. The results of the test will be sent out in the post in two weeks time.

Letter from Hospital Trust

Rachael received a letter from TG Hospital Trust about the changes  which are to take place within the urological services in the near future. The letter informed Rachael that her consultant will be moving to Wy Hospital. It also suggested that patients may wish to stay at TG Hospital with a new consultant and urological team but that there is still an option to transfer care to Wy Hospital.

Tuesday, 11 December 2012

Appointment with Wheelchair Services

Rachael attended her appointment for an assessment for modifications to her wheelchair controls due to her increasing difficulty in using her joystick.
Rachael was offered a small joystick that she would control with her chin. Rachael was concerned that this would be unsuitable as she felt that she would knock the joystick accidentally due to not being in full control of her chin and neck movements.
Rachael asked if the joystick could be adapted so that she could just control her legs with it.
Two other members of staff were consulted. When they plugged Rachael's wheelchair into a computer they found that it would not be possible to separate the control of the legs from the control of the back.
They are going to contact the technical staff at Invacare to see whether they can solve the problem or if a new programme could be written for Rachael's wheelchair.
Rachael was disappointed that a solution couldn't be found, she said that she would send an email to S showing him how one of her friends had had a wheelchair adapted.
S said that he will continue to work on the problem and will contact Rachael as soon as he finds a solution.

Friday, 7 December 2012

email from Speech Therapist

Mandy sent a follow up email after her visit to Rachael on Monday. Mandy has spoken to the finance dept at Inclusive Technology. Unfortunately they cannot split the invoice so that Rachael could pay part of the cost of the larger stand. Mandy can foresee delays if she tries to re-negotiate with Community Loans so she has asked them to do a straightforward swap. The Rehadapt stand has been returned and a vertical desk stand with Daessy plate has been ordered. Mandy hopes to hear about the delivery soon, she will keep Rachael up to date.

Thursday, 29 November 2012

Visit from Speech Therapist

Rachael had a visit from her speech therapist today. M came to take away the Rehadapt stand for the MyTobii computer. M is going to try and get a floor stand for Rachael but she is not sure whether the company makes one. She said that if she cannot get a floor stand she will have to get a table stand. If she is able to get the floor stand there may be a difference of £200. Rachael said that she would pay this.

Monday, 26 November 2012


Rachael attended Hydro with M as session supervisor and student G. Initially M was a little nervous when getting Rachael into the pool and it took him some time to make her comfortable. Communication difficulties made it hard for Rachael to explain to M where her head was in a comfortable position.
Eventually M asked G to assist him by holding Rachael's head which allowed him to work freely on Rachael's shoulders and neck.
M worked with Rachael for about half an hour and then left her, with G still supporting her head, to float and relax.
After the session Rachael noticed a huge improvement in her mobility and the pain that she had in her left shoulder before the session had gone completely. 
Rachael was able to lift her arm onto the control panel of her wheelchair herself and drive down a long corridor before needing assistance.
Rachael was especially grateful for this as she will miss next week's hydrotherapy session due to her PA being on holiday.

Wednesday, 21 November 2012

email from Speech Therapist

Rachael received an email from M regarding the stand for the My Tobii. She said that the mounting plate on the back of the device is called a Daessy (pronounced 'daisy'). The Rehadapt table that has been ordered for Rachael does not have the same plate on it. It is possible to take the mounting off the Rehadapt stand and put it on a Daessy stand but M's colleague, I, thinks that this might affect the overall strength and stability of the stand.
M feels that the stand that has been ordered from Inclusive Technology for Rachael is not the best one. She has found a more suitable stand which her manager has agreed to authorise the purchase of for Rachael and she will try to arrange a refund for the other one or use it for someone else.
M thinks that the vertical desk stand or the Daessy desk mount are suitable. Before ordering the stand M needs to confirm how adjustable in height and angle the stand needs to be for Rachael.
(2nd email)
M has spoken to Inclusive Technology. They are able to arrange a return of the Rehadapt stand and re supply a vertical desk stand with Daessy plate as a straight swap.
M will visit Rachael at a convenient time to collect the Rehadapt for return. 
M then asked Rachael if she is happy to have the replacement delivered directly to her. 
Rachael replied that she is happy to take delivery at home. She needs a stand with a little tilt. Ideally she would have one quite high up on a floor stand but she believes that they are much more expensive. She asked M if there is any chance she could put to.

Monday, 19 November 2012


The pool was very quiet again. The new student and three other patients were in the pool. S was able to concentrate on working with Rachael.
S paid particular attention to Rachael's neck and shoulders. This left Rachael so relaxed at the end of the session that she was unable to maintain her neck and and upper body posture. This posed logistical difficulties when getting out of the pool.
Rachael has maintained the ability that she regained at last week's session. Although she was tiring at the end of the week she was still able to move the joystick a little.
When she came out of hydro this week Rachael was able to drive up the vehicle ramp and position herself in the car.

Thursday, 15 November 2012

Catheter change at TG Hospital

Rachael attended her catheter change appointment. The catheter came out easily this time. Rachael suggested that it might be because she has been using the Solution R.
S said that the next appointment will be at Wy Hospital instead of TG Hospital as he has handed in his notice and will be setting up a new clinic.
Rachael confirmed that she wants to transfer her care with S to Wy Hospital in order to maintain continuity of care as this is very important to her.
There is a possibility that the new clinic will not be up and running by the time of Rachael's next appointment in December. Rachael has a catheter change set at home which she will bring with her. S said that he will phone to confirm the appointment.

Monday, 12 November 2012


The heating was finally mended and Rachael was able to attend Hydro for the first time in four weeks.
Rachael discussed the problem she had been having with the immobility of her left arm which had left her unable to operate the controls of her wheelchair for the past few weeks.
The pool was very quiet. There were only three other patients and a new student member of staff in the pool so S was able to concentrate on working with Rachael for the duration of the session.
After the hydro session Rachael was relieved to find that she had regained the use of her arm and was able to control her wheelchair again. However, she found this very tiring and as limited as it had been before. The four week delay in treatment had clearly weakened the  muscle, but she was now able to move the chair a short way and to raise and lower her legs.

Friday, 2 November 2012

Letter received from Dr E

Rachael received a follow up letter from Dr E regarding her appointment at the clinic on 31st October.
Dr E said that he was pleased to see Rachael again and that she was accompanied by her PA. He noted that Rachael's mobility is worse due to the weakness in her left shoulder. He stated that Rachael was concerned that this was due to her hydrotherapy appointment being cancelled but he felt that this had little to do with it.
Dr E has written to wheelchair services asking for an urgent review for Rachael.
He then stated that Rachael uses her NIV machine intermittently with some benefit and that she remains on Riluzole. He thanked Rachael's GP for monitoring Rachael's Riluzole safety bloods.
Dr E then mentioned that Rachael's urological problems seem to have improved and that she is grateful for the care of Nurse S under Dr G at Wy Hospital. Dr E has written to Dr G to ask him to maintain an interest in Rachael's care.
The gastronomy is better after it was changed.
Dr E will arrange to see Rachael in three months time but will be available if any help is required in the mean time.

Thursday, 1 November 2012

Orthotics Appointment at B Hospital

Rachael attended her Orthotics appointment with V at B Hospital in order to try on some new shoes.
Unfortunately the shoes were too small once again. It was also difficult for Rachael's feet to slip into the shoes because they were lined with sheepskin. The insoles and raised toe area were also covered in non slip material.
After debating whether the shoe manufacturer could remove the lining and stretch the boot V decided to order a new boot in a larger size with an easy slip insole instead of the sheepskin lining.

Wednesday, 31 October 2012

Clinic at H Hospital

Rachael attended her appointment at Dr E's clinic at H Hospital. 
Dr E is going to send a letter to Wheelchair Services requesting an urgent appointment for an assessment regarding Rachael's wheelchair controls. He will also be sending a letter to Rachael's urology consultant, Dr G, about her referral to Wy Hospital.
Rachael saw S the physiotherapist at the clinic. She is going to phone K the community physiotherapist to arrange some shoulder supports for Rachael. She said that Rachael should speak to S at hydrotherapy to see if she could do anything about the weakness in Rachael's arm, but she did not hold out any hope.
She confirmed what K had said, that the shoulder muscle is very weak.
Rachael also spoke to B, the speech therapist. B said that she knows of another gadget called Mega B that could be provided for Rachael to help with her communication. It is a battery operated device that is smaller than the E Tran frame and it is more user friendly. B is going to contact L, Rachael's speech therapist, to arrange provision of this device.

Tuesday, 30 October 2012

Visit from Wheelchair Services

S from Wheelchair Services visited Rachael to carry out a service on her wheelchair. He adjusted the armrests by lowering them and moving them back. Rachael said that this was more comfortable. 
Rachael then explained to S that she could no longer use the wheelchair controls due to the weakness in her arm. S suggested that Rachael should go for a wheelchair assessment at Preston so that an alternative way can be found for Rachael to control her wheelchair. He said he would arrange an appointment for an assessment for Rachael on a Tuesday.
Rachael asked S for a spare cover for the Roho cushion, he said he would also arrange this for her.

phone call to Smart Box Customer Services

Rachael's Tobii eye gaze computer stopped working at 7am this morning, 30th October 2012, and would not turn on again. We contacted S at Smart Box customer services and she gave us step by step instructions to try to get the computer working. The instructions were as follows:-
1. Unplug the Tobii eye gaze at the back.
2. Remove both batteries.
3. Press the power button ten times.
4. Plug in the Tobii eye gaze without batteries and switch on.
The computer switched on but turned itself off immediately. 
S advised us to repeat steps 1, 2 and 3 and then plug in the computer and leave it for half an hour before turning it on again. This was successful and once the Tobii eye gaze was working the batteries were replaced.

Saturday, 27 October 2012


I didn't realise how much I relied on muscles that I would have rated as next to useless. My shoulder and arm ache constantly and I am extremely tired all the time . I didn't make it to my friend's birthday party this evening. I am sick of letting people down. I know she will be fine about it but all the same...

Wednesday, 24 October 2012

Visit from Physiotherapist

On Thursday 18th October Rachael complained that her arm was weak and she was struggling to use her wheelchair control when moving forwards. By Monday the weakness in Rachael's arm had worsened to the point where she was unable to move her wheelchair in any direction or to recline her position or to raise her legs.
Rachael's PAs had to adjust her seating positions and move her manually from room to room. 
This is a particular problem when Rachael needs to use the car as the ramp is quite steep and the wheelchair is heavy and fiddly to manoeuvre safely.
Rachael's hydrotherapy session was cancelled on Monday 22nd October so an emergency appointment was made with the Community Physiotherapist. 
K checked Rachael's shoulder muscle and bicep. Although these muscles were very tense she did not find any damage. K concluded that the weakness was due to the progression of Rachael's Motor Neurone Disease. K arranged an emergency appointment with wheelchair services to investigate alternative wheelchair controls.

Friday, 19 October 2012

Letter from Dietitian

Rachael received a letter from A regarding the review that took place at Rachael's home on the 16th October.
The letter contained an assessment summary which said that Rachael's reported weight was normal and stable. The letter stated that Rachael is receiving 700ml Nutrison Complete via her rig and that this appears to be meeting her nutritional requirements as her weight is stable. It stated her fluid intake via the rig. 
It went on to say that Rachael's bowels are opening normally and urine output is good. It said that the stoma site is good, no concerns expressed.
Then a treatment plan stated that the goal was to meet nutritional requirements for weight maintenance and fluid requirements for hydration via the enteral route. 
A listed some targets re Rachael's feed and liquid intake and the monitoring of Rachael's weight, skin condition, stoma care and bowel and urine output.
Then there was a note of Rachael's presciption.
The letter then stated that Rachael will have another review in three month's time and to contact A in the mean time with any queries.
Rachael's recollection of the review differed from what was in the letter and she was offended by this, particularly as she was referred to as a male in the letter.

Tuesday, 16 October 2012

Visit from Dietitian

A came to visit Rachael. A new review has come out and she had to confirm with Rachael in person before completing it. 
She went through Rachael's weight fluctuation. Rachael told her that although she has not been weighed successfully regularly she has lost weight but she is not concerned. Rachael told A that she can adjust the amount of feed she has accordingly. Rachael confirmed the amount of her fluid intake  and said that she only eats a little just for the taste. A was happy to leave the amount of Nutrison Multifibre Complete at 700ml. 
Rachael also told A that she supplements the feeds by having flushes of vitamin enriched liquid such as Marmite, fruit juice or thin soup.
A then told Rachael that she will be leaving in November but she doesn't know if anybody will be taking over. If Rachael needs their services a duty officer will always be available.

Monday, 15 October 2012


Rachael attended her hydrotherapy session with Sharon as Session Supervisor. 
There were eight other patients in the pool and Sharon did not have any assistants in the pool with her so she could only spend a limited amount of one to one time with Rachael.  
Sharon concentrated on working on Rachael's neck and shoulders in the time that she had available. Rachael spent the rest of the session floating supported by her PA.

Wednesday, 10 October 2012

Catheter change at TG Hospital

Rachael attended her catheter change appointment at TG Hospital. Rachael mentioned to S that she had used Solution R once since her last visit. He suggested that she could use it once a fortnight as there was still quite a bit of sediment in the tube and crystallisation at the end of the catheter.
Rachael asked S about using Suby G, aka Uro Tainer Chlorhexidine opti-flo and Uriflex. S suggested that this could be used once a week as it is a weaker solution than Solution R.
Rachael's catheter was difficult to take out due to cuffing on the end of the tube.
Another appointment was made for 15th November 2012.
TG Hospital is currently undergoing a restructuring programme.  Dr G will be moving to the new unit at Wy Hospital before Christmas, S will be moving with him. In order for Rachael to remain as a patient of S she will need to be referred to Dr G at Wy Hospital by Dr E.

Tuesday, 9 October 2012

email from Dietitian

A emailed Rachael hoping that she was well and to arrange a visit on the 16th Oct. Rachael replied that she was well and she confirmed that this date was convenient for a visit.

email from Speech Therapist

Rachael received an email from L regarding a table stand that had been ordered for Rachael. She asked Rachael to let her know when it arrives as Loan Stores may not inform her. 
She also said that she will be on maternity leave from 14th November. She said that she will pass Rachael's case on to MG as she knows her already. L said she would arrange a visit prior to this if Rachael needs anything or wishes to discuss anything.
Rachael replied that the stand had been delivered to a neighbour and when it was finally received it was found that it was the wrong fitting for the MyTobii.  
Rachael also copied her reply to M.
Rachael then said that her main issues at the moment relate to her frustration at being misunderstood verbally and others reluctance to use her other means of communication.
Rachael felt that L would not have a solution to this.
Although Rachael would enjoy seeing L she said that she doesn't have any pressing concerns that  are not being dealt with by other specialisms.
L asked Rachael for the code number on the stand so that she could check that the correct items were being sent out.
Rachael replied with the model number.

Monday, 8 October 2012


Sharon went through the full range of motion exercises with Rachael. She also did some leg exercises with help from physiotherapy student, John.
Sharon paid particular attention to Rachael's neck and shoulders as they are still quite stiff and can be painful.
The poolside attendant had borrowed a float from another pool which, it was hoped, would hold Rachael's head out of the water whilst she floated. Unfortunately, as with other floats, this did not work as it had a tendency to spin around when Rachael moved her head. 
The PAs again remained with Rachael at the side of the pool to provide assistance with holding Rachael's head out of the water.

Thursday, 4 October 2012

Dental appointment

Rachael attended an appointment for a dental check up at Dr A's dental surgery. Everything was fine, the dentist scraped some tartar from Rachael's teeth. He recommended that Rachael should use Oral B Pro Expert toothpaste from now on as this helps to prevent a build up of tartar.

Tuesday, 2 October 2012

GP appointment at W Medical Centre

On Monday morning, 1st October 2012, Rachael discovered a large blister like swelling at the entrance to her rig site. It was very painful to the touch and it was inflamed. There was a constant discomfort which seemed to be internal but this was bearable. Racahel had previously treated a similar but smaller swelling with hydrocortisone cream.
As Rachael had a Hydro appointment which she did not want to miss she decided to treat the swelling with hydrocortisone cream again and see how it went on.
The swelling was cleaned, dried and treated with cream throughout the day but as there was no improvement by the following morning Rachael decided that it would be best to consult her GP. Dr G checked the swelling. She stated that she was unsure of the cause as she is not particularly familiar with rigs. She prescribed a five day course of antibiotics for Rachael but advised her that if it did not clear up by the end of the course she would need to go to H Hospital and let them have a look at it. 
Dr G also gave Rachael her flu jab which left Rachael feeling a little unwell for some time afterwards.
Dr G also informed Rachael that her smear test will be taking place soon. Two nurses will attend Rachael at home for this.

Monday, 1 October 2012


Rachael had another lovely session at Hydro with Sharon.
Although the pool was busy Sharon managed to go through the full range of motion exercises with Rachael. Sharon observed that Rachael's neck and shoulder were stiff and that it was painful for Rachael to fully extend her left arm as it is generally immobile in a bent seated position. 
Rachael found it helpful and reassuring to have her PAs supporting her neck whilst floating at the side of the pool. This took the strain off Rachael's neck and also offered security for Rachael knowing that she had someone with her all the time.

Occupational Therapy appointment

Rachael attended an appointment with Julie at B Hospital to try to resolve the problem of her fingers crossing over each other.
Julie attempted to find a solution that would also resolve the ongoing issues of flexion in Rachael's dip joints and hyper extension of her pip joints on the first and second fingers of her left hand.
Julie observed that Rachael found adduction of the forearm much easier than abduction, contrary to what is considered the norm, meaning Rachael finds it much easier to steer her chair to the right than to the left. This appears to be due partly to the angle of Rachael's arm when at rest and that she steers from her shoulder instead of her wrist.
Julie initially recommended a hard thermo-plastic splint but realised that this would not give Rachael enough hand movement to steer her chair. She tried a wraparound finger splint but this seemed to have little effect.
Julie decided that a softer neoprene glove and a hard plastic finger dividing splint at the same time would be more suitable.
After further discussion with her colleagues Julie returned with a ready made Lycra glove. She sewed the fingers of the glove together to prevent them from separating. This also allowed for small pieces of shaped plastic to be inserted into the spaces between the fingers to act as additional dividers if required.
One disadvantage to the gloves appeared to be their lack of grip on Rachael's wheelchair joystick. This caused her hands to slip off the controls especially when pulling from left to right. Julie provided Rachael with some tape backed rubber matting to stick to the joystick to create grip. 
At home Rachael trialled the rubber matting but it was still quite slippery and Rachael again struggled to maintain a grip.

Wednesday, 26 September 2012

Respiratory appointment at Wy Hospital

Rachael was seen by one of the registrars at the lung clinic. The Registrar was pleased with the results of Rachael's blood gas oximetry test.  She said that Rachael should carry on with the use of the Bi pap as she has been doing and if she feels the need to increase usage of the machine she can do. Rachael was provided with new tubing for the Cough Assist machine. Another appointment was made for four month's time on the 16th January 2013.

Tuesday, 25 September 2012

Appointment with Phlebotomist at W Medical Centre

Rachael attended an appointment at W Medical Centre for her liver function test. Rachael brought her heat bag which she used on her hand prior to the blood test being carried out. This seemed to work as Cheryl was successful at the first attempt, although the procedure was painful.

Monday, 24 September 2012


Rachael attended Hydro for the first time in five weeks with Sharon as Session Supervisor. 
Rachael was pleased to be back in the pool but she only had a basic workout. Sharon noticed that Rachael was quite stiff generally. 
At the end of the session Rachael managed to walk three paces but she found it difficult to stand. 
Sharon noticed muscle wasting on Rachael's bottom and she asked her if it was painful as it looked bony. Rachael said that it was and Sharon suggested using a cushion or rubber ring on the pool hoist to make it less painful for Rachael to get into the pool.

Thursday, 20 September 2012

GP Appointment at W Medical Centre

Rachael attended an appointment with Dr G at W Medical Centre. This was to try to get a prescription for either  Suby G or Solution R as recommended by the Urology nurse at TG Hospital to keep Rachael's catheter clear.
Dr G could only find Solution R on the computer. She gave Rachael a prescription with the proviso that if it does not not work Rachael will contact the surgery and the doctor will look into the matter further.
The Solution R was added to Rachael's repeat prescription. Dr G also raised the issue that some of the drugs in Rachael's Just in Case kit may now be out of date. She asked Rachael to check the kit and let her know if any drugs need replacing.

Friday, 14 September 2012


Katherine came to see Rachael to supply her with a new lid for the suction machine. We had requested this because the other one has cracked. She agreed to supply some tubing and to look for a yankauer without a vacuum pressure hole in the side.
Rachael enquired about continence pads for her bed. Katherine said she would telephone Rachael with details of the local continence assessor.
Katherine acknowledged that Rachael is still waiting for a right hand splint and some replacement foam for her neck brace.

Thursday, 13 September 2012

Appointment with Phlebotomist at W Medical Centre

Rachael attended an appointment for her liver function test at W Medical Centre. Cheryl was unsuccessful after three attempts to get blood from Rachael's hands and foot. 
Another appointment was made for Tuesday 25th. September at 11.05 am.

Wednesday, 5 September 2012

Catheter change at TG Hospital

Rachael attended TG Hospital for a catheter change. Rachael mentioned to Stuart that she had wet the bed that morning due to her catheter being blocked.
When Stuart removed the catheter he noticed that the end was full of hard grit and sediment which had crystallised. Stuart told Rachael that there are some drugs, Suby G or Solution R, that can be used to de-crystallise the debris that collects in the catheter tube.
Stuart advised Rachael to speak to her GP about this as these drugs are only available on prescription.
The change was more difficult and painful than usual due to cuffing.
Another appointment was arranged for Thursday, October 11th. 2012.

Monday, 20 August 2012


Mark is evidently unsuited to Rachael's needs and demonstrated this immediately on entering the pool by allowing Rachael to fall face down into the pool. Communication with Rachael was nil.
After some floating the session was cut short again.
Instruction was filtered down from Sharon that as the pool would be busy for the next few weeks and Sharon will be on holiday, Rachael would not be able to attend Hydro again for another five weeks as Mark would not cope on his own.

Monday, 13 August 2012


Sharon introduced the new trainee supervisor, Mark. Mark worked with the other patients and Sharon concentrated on a full range of motion exercises with Rachael.
Sharon spent some time on Rachael's quads and neck and shoulder muscles. She noticed that the tone in Rachael's legs had deteriorated. Rachael did some standing exercises but only walked one and a half widths of the pool.
Sharon asked about the choking episodes at home and paid extra vigilance whilst Rachael was in the pool.
This was a shortened session lasting thirty five minutes.
As a note, Rachael has requested that her PA's remain in the pool room with her throughout the session.

Friday, 3 August 2012

Wheelchair Services

Eric brought two new armrests for Rachael's wheelchair. After some minor adjustments to ensure that they were in a comfortable position for Rachael he fastened them securely to her wheelchair. He also said that there was no place for another screw on Rachael's left hand side because this would affect the positioning of the control panel.

Thursday, 2 August 2012

Catheter change at TG Hospital

Rachael attended a catheter change appointment at TG Hospital. Rachael explained to Stuart that her catheter had been blocking since Monday 30th July. Stuart noticed that sediment was collecting in the tube and that it was also adhering to the wall of the silicone tubing. He wasn't quite sure why this was happening because when he gave Rachael a bladder wash the liquid was quite clear, also the urine in the leg bag was clear.
Stuart suggested that the leaking could be caused by bladder spasms and he mentioned anticholinergic medication which would help to relax the bladder. Stuart added that there were specific neurogenic drugs to stop bladder spasms in patients with an underlying neurological condition.
Another appointment was arranged for Thursday 6th August 2012.

Wednesday, 1 August 2012


Katherine came to see Rachael to supply her with a new neck brace which we had requested due to the the plastic becoming warped on the existing one. She struggled to communicate using the Tobii eye gaze computer. She also brought a replacement suction machine, it was big and unwieldy so she said that she would get the replacement part that was needed from Loan Stores instead. She returned later on with the replacement part. 
She will come again next week to replace Rachael's hand splints because the foam is depressed on the ones she has now causing them to dig into her arms.

Monday, 23 July 2012


Rachael had a very productive session with Dan. Dan did a thorough full body workout with Rachael. He spent an extra amount of time working on Rachael's feet and toes which has been of great benefit. Rachael could still feel the improvement the following day. 
Dan noted that Rachael's shoulders were both out of alignment but Rachael reported that she had become used to the discomfort and that it was her neck that caused the most trouble. Dan put Rachael's shoulders back and massaged her neck.
There was an incident at the end of the session where the staff lowered the chair into the pool for another patient whilst Rachael was floating on her back. A small wave from the chair went up Rachael's nose so Dan sat her up. However when Dan lay Rachael down again some water ran back down Rachael's throat but due to thick phlegm she had difficulty in swallowing or coughing up the water. She managed to clear the blockage after Dan sat her up straight again. Rachael did not feel endangered by the incident but the pool staff did seem to panic a little.
Due to a staff meeting at the hospital on the 30th July and her PA being on holiday on the 6th August Rachael will not be going to hydro for three weeks.

Tuesday, 17 July 2012


Rachael attended the Orthotics Department at B Hospital for a trial fitting of some new shoes to help with the curvature of her toes. Unfortunately the new shoes were far too small. Val noted that Rachael's feet had widened considerably since her last fitting.
After discussion it was agreed that Val would order some new wider shoes with a squarer toe and that they would be fleece lined for added warmth. An inner sole would be made for the shoes with a raised area which would sit under Rachael's toes and help to support them. Rachael's feet would be able to slide over the raised area, but if that didn't work, Val would find a way to attach the inner sole to Rachael's foot before sliding it into the shoe. Rachael is still dubious about whether this will work or be counter-productive.
Val also recommended purchasing some battery powered heated socks to help keep Rachael's feet warm.

Monday, 16 July 2012


Rachael attended hydrotherapy with Dan as session supervisor. Rachael had no specific issues but due to recent problems Dan worked mainly on Rachael's shoulders, arms, hands and neck. He also did some work on her knees. 
Dan worked on a particularly effective exercise with Rachael lying on her back and doing a breaststroke motion whilst her hands were flat on her stomach. Rachael noticed a slight and occasional difficulty in breathing whilst lying on her back in the water. This was not enough to cause discomfort at present but is something to be aware of in the future.
The pool was noticeably cooler than usual and Rachael's jaw was locked on getting out and Rachael continued to feel the cold, shivering while getting dressed.

Monday, 9 July 2012


Rachael attended her hydrotherapy session with Dan as her session supervisor. Rachael had no specific issues this week so Dan asked his trainee staff, Cheryl and Justin, to work on Rachael's feet, knees, hands and shoulders.
Cheryl worked on Rachael but she was totally ineffective. She caused some pain to Rachael's feet and Dan had to tell her to stop and to listen more carefully to what Rachael was saying to her. After this she just gently rubbed and massaged Rachael's muscles which had no useful effects on Rachael whatsoever.
Dan spent a couple of minutes with Rachael at the end of the session but Rachael only managed to walk about a width and a half as her muscles had not been worked on enough.

Friday, 6 July 2012

Podiatry at B Health Centre

Rachael attended the podiatry clinic. The podiatrist asked Rachael how her toes had been since the last visit and if she had required any antibiotics. He checked the circulation in Rachael's feet with an ultrasound system. He informed Rachael that the circulation around her bigger vessels was healthy but the microvascular vessels that bring blood to the skin are not working so well, which is the reason why she has cold feet.
The podiatrist asked Rachael about sensations within her feet. Rachael informed him that she can feel things but that she has no sense of whether it is a sharp or a dull touch.
He advised Rachael that the best thing would be for her PA to file her nails once or twice a week to a manageable level. This way the sides will grow a little bit longer than the top of the nail maintaining a straight edge which will stop them from further ingrowing. The podiatrist cut Rachael's nails and demonstrated how to file them.
He congratulated us on the general foot care regime, especially in attempting to keep Rachael's feet warm at all times by using heated slippers and socks etc. He also advised us to keep Rachael's shoes warm before wearing and ensure that her feet are warm before she goes to bed.
The podiatrist mentioned nail surgery again but did not feel that it was the best option at this stage.
The podiatrist offered Rachael the option of taking a referral application home to refer herself if required. An appointment with a referral would take one to two weeks whereas existing patients can expect to wait four to six weeks. Rachael said she would rather be a patient and use the drop in clinic if necessary. The podiatrist agreed and recommended to Rachael that if she books an appointment within twelve months he will be able to keep a check on her feet and her status will remain active on their system.

Monday, 2 July 2012


Rachael attended a hydrotherapy session with Sharon. Sharon went through the full range of motion exercises with Rachael. Walking was largely unsuccessful but Sharon concentrated on Rachael's neck muscles which have become weak. There were no dislocations in evidence this week.

Tuesday, 26 June 2012

Catheter change at TG Hospital

Stuart advised Rachael that her bladder has shrunk due to the use of the catheter over a long period, therefore there is reduced capacity, so if the catheter gets blocked leaking occurs. Rachael had a bladder wash. When the catheter was removed it was blocked and noticeably gritty, possibly caused by sediment attaching to the tube. Once the new tube was inserted Rachael's bladder drained immediately. Stuart advised that during a bladder wash, if the syringe is pushing water but blocks when the water is pulled out it may have attached to the bladder wall. If this happens do not pull. However if it blocks when pushing water in phone Stuart or the ward and arrange to have the catheter appointment changed as soon as possible. Stuart also said to do a bladder wash at least every other day. An appointment was booked for five weeks time.

Visit from Servicing Engineer

The engineer came to service the Bi-pap and the cough assist machine. Both were in good condition. The engineer took readings from both machines and changed the filter in the Bi-pap. While he was here we asked him about the whistling noise coming from the replacement hose that Wy Hospital had sent to us. He was immediately familiar with the problem and explained that the respironics hose has a smoother interior and as a result is more prone to breaks and tears. The replacement hose is more durable but its flexibility comes from its ridged interior. These contours in the replacement hose are what cause the vibrations which we hear as a high pitched wail.

Monday, 25 June 2012


Rachael had ingrowing toe nails. We attended the emergency drop in podiatry session at B Health Centre. We were told that Rachael had been discharged from the centre as she has not attended since 2010. We completed a fresh referral form and Rachael was seen in clinic.
The podiatrist cut Rachael's toe nails and removed the ingrowing edges. He removed dead skin and cleaned out the infected areas. He bandaged Rachael's right big toe and confirmed some details about Motor Neurone Disease. 
We were advised that we will be seen within the next four weeks for a full check up of Rachael's feet. The podiatrist briefly told Rachael about options for dealing with curvature of the nails, but this may not be possible due to poor circulation, its long recovery time and inherent risk of infection.
The podiatrist said that based on Rachael's condition she should be treated regularly for nail clipping, advice and general foot care at the clinic.

phone call from Lung Clinic

Shelley phoned regarding Rachael's complaint about the 'whistling hose' on the cough assist machine. Viva had previously arranged to service the machine on June 26th. so Shelley suggested to wait for the engineer and see if he could find any faults and then phone her again once the service had been completed.

Sunday, 24 June 2012


I took half (10ml) of my baclofen and seem ok just tired from a night hoisting out of wet sheets.

Saturday, 23 June 2012


I feel tonnes better than I did. Turns out that my catheter isn't blocked but I am having some major bladder spasm. I wee'd all over my chair and onto the floor so I got in bed whilst the cushions dried and promptly bled  through the pad and over the sheet.


Happened again after morning drugs. Fine then not fine. Less severe today but still unpleasant and in addition I have a blocked catheter and am menstruating: lovely!

Friday, 22 June 2012


The same effects were felt by Rachael on taking her Baclofen in the morning. The effects only lasted for a couple of hours but she felt very unwell throughout this time.


Felt fine when I woke up at 7am with my feed pump beeping end of dose! I took my morning drugs, including a new batch of baclofen, opened yesterday! Same dose, different brand name. Within 15 minutes I was blindingly photosensitive and exhaustively fatigued it took 2hrs to get to shattered, where I could signal yes/no responses. I am still very tired.

Thursday, 21 June 2012


Slept for most of the day. Cough assist machine brought a lot of thick phlegm. Catheter was quite weepy.


On taking the new Lyflex Baclofen in the morning Rachael suffered an intense headache and very sensitive eyes. Due to this Rachael had to sit in the dark. Rachael also suffered extreme muscle weakness to the point where she could no longer raise or lower her chair with the joystick. Rachael's speech was also very affected.
These effects lasted for most of the day and Rachael was asleep in her chair by 6pm.


Took morning drugs but didn't watch them being administered carefully. Felt tired and put it down to a disturbed night . I'm now wondering if my p.a got the correct dose or gave me too much? I have a migraine type headache and can't bear light. I feel totally drained.


I'm better now, if a little tired. For the past few nights, with my feed pump at only 80ml/hr, I've had stomach ache and trapped wind. It's been very warm at night.


Horrible indigestion stomach ache.

Wednesday, 20 June 2012


After a productive meeting with my speech therapist to fix a glitch on my eye gaze, a stroll round the nature reserve and cake baking with my daughter, I am happily pooped.

Visit from Speech Therapist

Lynsey came to sort out the computer problems that Rachael has been having. Lynsey phoned Smart Box who after a lot of to-ing and fro-ing took over remote access of the computer. Lynsey was advised that Rachael should make a note of the time when the computer crashes and what task it was performing at the time, for two to three days. Rachael should then phone Smart Box when the computer goes wrong and they will go on remotely to investigate further.
Lynsey is also going to get a bed stand and look into switch options for use on the ipad. 
Lynsey was here for about two hours.

Tuesday, 19 June 2012


I was shattered last night and this morning but I feel much better after a good blast on the cough assist and suction machines.

Monday, 18 June 2012

Very Good

Training a new p.a then hydrotherapy, then shopping, then cooking tea, then training an established p.a in I.T then training the new p.a again then bed. What a day!


Sharon went through the full range of motion exercises with Rachael. She noticed that Rachael's right shoulder had dislocated again, but managed to pop it back in. Sharon expressed concern as to the frequency of the dislocations on both shoulders and said she would phone the MND specialist at H Hospital.

Friday, 15 June 2012

Visit from Prism

The engineer arrived and replaced the manual cables on the shower chair with new hydraulic cables. The shower chair is now working fine.

phone call to Speech Therapist

Rachael phoned Speech Therapy to speak to Lynsey. Lynsey's secretary stated that Lynsey doesn't work on Fridays but she would pass the message on. The secretary was informed that Rachael is having problems with her eye gaze computer, which keeps shutting down for no apparent reason.
Rachael went to visit Becca on Thursday and the computer shut down three times. Rachael even tried using Becca's power lead and this made no difference. Rachael expressed concern that the eye gaze would have to be sent away for repair which would be totally unsuitable as she needs it for daily use.
The eye gaze only has a limited amount of warranty remaining and therefore needs repairing as soon as possible.
The secretary stated that she would make further enquiries and pass the information on to Lynsey or another therapist.
Rachael has also checked the battery and it seems to be fully charged.

Phone call from Occupational Therapist

Debbie phoned to speak to Rachael regarding the repair of the shower chair. Debbie has contacted Prism and they will contact Rachael on her mobile when an engineer is in the area. Debbie confirmed that the shower chair is still under warranty.

Thursday, 14 June 2012

Very Good

Had a wonderful day visiting a friend. She's a 'wheelie' too, so her house is accessible. Played with her communication aids and assorted cool gadgets.

Visit from Engineer

The engineer came to try and fix the shower chair but he did not have the right parts. He came back later with a replacement chair. The replacement chair was half an inch too short, so the engineer exchanged wheels and put spacers on the new recliner chair. The new chair was not wide enough at the back to go over the Closomat. The engineer advised us to ring Debbie to get Prism to fix it. The wheels were swapped back. The engineer said they will also get in touch with Debbie to let her know that they can't fix it.

email to Speech Therapist

Rachael apologised for not getting back to Lynsey sooner. Everything is fine, the care package came through. Rachael said that Lynsey is more than welcome to visit, but there is no urgency, progress continues to be fairly slow.

Wednesday, 13 June 2012

Visit from Wheelchair Services

Mark and Steve came to fit a new arm on Rachael's wheelchair. Rachael was unhappy with the new arm as it was hard and made of bare plastic. Mark agreed with Rachael and said he would get an identical arm made up from different and more comfortable material. Rachael then requested a matching arm for the right hand side of her chair.  Mark measured up Rachael's chair and said he would get them made up as soon as possible.
Mark informed Rachael that he would be leaving the area shortly and would be replaced by Steve who was with him today.

Tuesday, 12 June 2012

Appointment with phlebotomists at W Medical Centre

After seven attempts to get blood from Rachael's elbow joints for a full blood count and LFT's (Riluzole blood test) Tina was successful from Rachael's right hand. The rectalgesic ointment proved largely ineffective, leaving Rachael with a headache.

Monday, 11 June 2012


Rachael had a very productive session. Rachael initially complained of back pain and Sharon worked on this for the session. Sharon noted that there was distinct discomfort in Rachael's right shoulder. She showed Rachael and her pa a range of motion exercise to help ease it. Sharon went through the full range of motion exercises and a weaving exercise to free Rachael's hips and back. Rachael walked three good widths with very little support required.

Friday, 8 June 2012

email from Speech Therapist

Lynsey emailed to check on the status of Rachael's care package and to see how Rachael is generally. Lynsey is to visit Rachael and help with any queries.

Wednesday, 6 June 2012

Visit from Occupational Therapist

Debbie came with Steve from Prism, who ran through the options for converting the shower chair for use as a commode. It was agreed with Debbie that Steve will provide two new seats for the shower chair and a commode bucket. These will be delivered in the next four weeks. The additional seat is to replace the current one whose Closomat curtains are ripped.

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.

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 

Friday, 30 March 2012

Calling all scientists

When I have eaten well, I have 800ml of cooled, boiled water pumped via my feeding tube, overnight. Each morning I have 50mg tablet of Riluzole, crushed in a 60ml suspension of cooled, boiled water flushed with a syringe, via my feeding tube. The overnight water is prepared and kept in a thin plastic bottle, provided by Nutricia. The Riluzole water is prepared and kept in a thick plastic bottle, provided by TG Hospital.

Last night I went for a lovely indian meal, with 4 members of my staff team. This morning, after an overnight water pump, I went for my usual Riluzole. I added the water, left over from the Nutricia bottle and it turned orange! 

I can't imagine what has caused this. We repeated the experiment 3 times, using tablets from different blister packs and water from the Nutricia bottle. Each time the water turned orange! Each test used a freshly sterilized receptacle. We conducted a final test, using water from the thick plastic bottle. It remained clear. I used that dose. 

I am now slightly concerned to have ingested 800ml of dodgy liquid overnight!
Watch this space for tales of my metamorphosis

*watching too much spiderhulk!
*listening to 

Etta James - The Blues Is My Business

Thursday, 29 March 2012

Visit from Wheelchair Services

The engineer brought the wrong headrest but thinks he knows which one he needs. He did say it would be next week when he can come back as they are short-staffed. The following day, one of Rachael's PA's brought an alan key that fitted the headrest and was able to mend it. Eric phone on 03/04/12 to book an appointment. Rachael said we had fixed the problem so we didn't need one.

Tuesday, 27 March 2012

Visit from Occupational Therapist

Rachael asked Debbie if a commode could be fitted to the shower chair. After some discussion about the height of the Closomat, Debbie arranged to do a joint visit with Steve from Prism. Debbie also commented on the rust. Debbie asked if anything needed to be set-up in the bedroom. Rachael said everything was fine there, and everything was fine with the hoist and slings. Rachael then then told Debbie about the man from the Loan Stores, who had shown up without an appointment, without showing his ID, barged past Rachael's elderly visitor demanding to service the sling. Rachael was in bed and was very intimidated (as was her friend). The man refused to leave despite Rachael continuously shouting at him to get out. Debbie thought that a complaint should have been made against the man. Rachael then explained how her headrest was broken, she was having difficulty using her control panel and her elbow was causing her pain as the arm rest did not go far enough back. Debbie rang Wheelchair Services who said Mark will have the issue solved by April. Rachael said her neck was constantly aching due to the broken headrest. Debbie rang Wheelchair Services straight back. Appointment made for the following Thursday to fix headrest.

Monday, 26 March 2012

Orthotics Appointment at B Hospital

Tried another new splint for second finger on left hand, using Neoprine. Julie noted that the first finger was adjusting well to the plastic splint. Julie suggested that Rachael continue with plastic splint, but made another Neoprine one that Rachael can progress to when she feels ready or when the DIP joint permits.


Dan went through full range of motion exercises, focussing on Rachael's right quads. Rachael walked for 2 widths, but did a lot of kicking exercises and pushing off from the wall with Dan offering resistance. Rachael thoroughly enjoyed it and felt the benefit. There was no issue with communication whatsoever. There was an incident when hoisting Rachael into the pool,  she caught her knee on a sharp screw on her wheelchair and was unable to indicate where the pain was as the hoist was raised scraping through her skin. No permanent scarring. Apologies all round!

Monday, 12 March 2012


Rachael had a wonderful session. Sharon showed Dan a full set of thorough range of motion exercises, which Dan seemed competent and confident with. There was no communication difficulties apparent. Rachael walked 6 widths of the pool.

Orthotics Appointment at B Hospital

Rachael reported that whilst bandages helped Rachael's knuckles, they had let the tension slip in Rachael's finger get worse. The blue plastic cast had not worked as could not get it over Rachael's knuckle. Julie made a hand plastic splint moulded on her own right arm and a finger splint to adjust the curvature of Rachael's left forefinger. Rachael can only tolerate the finger splint for a matter of minutes but this should be extended over time. Further appointment made for 2 weeks time.

Friday, 9 March 2012

GP Appointment

Cheryl (Phlebotomist) failed to draw blood. Rachael suggested using some  ointment to open her veins a little, like they use at the lung clinic on Rachael's earlobe for capillary blood. Cheryl went and got Angela who also failed to get any blood. Cheryl asked Angela about Rachael's suggestion. Angela said that using an ointment would not work but fetched Dr O,who wrote a prescription for Glyceryl Trinitrate Ointment to open the veins. This is to be applied very sparingly in the crook of Rachael's elbow in the waiting room approximately 4 mins before next appointment for blood. Dr O got blood from the back of Rachael's hands after 9 attempts. Rachael found this very painful.

Thursday, 1 March 2012

Catheter change at TG Hospital

Rachael had catheter change in the wheelchair again. Rachael had one voltarol flush just before leaving the house and another voltarol flush once she had arrived at the hospital. Rachael seemed to tolerate the flush well with minimal discomfort.

Monday, 27 February 2012


Rachael spent most of the session floating before she walked 2 widths with a first year student observing. The communication was poor.

Orthotics Appointment at B Hospital

Rachael reported that the full hand splint was uncomfortable and seemed to offer little relief, but the glove offered a little stability to Rachael's hand. Julie made 2 finger bandages.

Monday, 13 February 2012


Sharon went through full range of motion exercises, focusing on shoulders and hips. Rachael walked 3 widths and half an uphill length. Rachael felt invigorated and loose-limbed after. No communication problems. Rachael and Simon had a good chat about how things had been.

Monday, 6 February 2012


Sharon had a cold so guided the session from the poolside. Kathryn was told to focus on knees and elbows, with additional work done on shoulders and hips.

Orthotics Appointment at B Hospital

Rachael attended appointment for finger splint fitting and was given supportive gloves and a temporary hand splint. Further appointment made for 27/02/12

Sunday, 5 February 2012

Choking Episode

Rachael experienced a choking episode during which she was unable to breathe and felt panicky. PA acted quickly and efficiently setting up cough assist and suction machine, easing Rachael into an upright position and then alternating between the two machines. PA remained calm and in control.

Friday, 27 January 2012

Continuing Healthcare Assessment

Mr V conducted an assessment in which nobody acted on Rachael's behalf. Rachael requested extra hours for 2 person hoisting and overnight care. Rachael has not had any input from CHC apart from payment since 2008. Mr V seemed quietly optimistic that there would be an increase in payment as Rachael's needs had certainly changed and increased since 2008.

Tuesday, 24 January 2012

Visit from Nurse

Shelley arrived at 10:30am to train staff on how to use the cough assist machine. Shelley asked Rachael if she frequently struggled to cough or swallow mucus in her throat. Rachael said she did. Shelley said that using the cough assist will prevent chest infections by effectively "hoovering" the mucus plug out of Rachael to try  and simulate a cough. Shelley noticed Rachael has some slight chest movement remaining. Shelley then advised Rachael to use the machine every day. Shelley also advised that there should be a maximum of 3 cycles per use, although you can have another after 30 minutes. Overuse of the cough assist can cause fatigue. Shelley took Rachael's finger pulse oximetry which resulted in 77 beats per minute at 96%. She also checked Rachael's chest with a stethoscope.

To setup Cough Assist Machine:

Attach bacterial filter to machine
Attach tubing to bacterial filter
Attach adapter to tubing
Attach face mask to adapter

  • Do not use machine 30 mins after eating/drinking
  • Do not use without bacterial filter
  • Do not exceed 30cm in pressure
  • Regularly check tubing for cracks
  • Keep on stable surface
  • Keep away from heat/water sources
To use Cough Assist Machine:

Always test pressures first before use
  • Take off mask
  • Cover tubing with hand
  • Rotate pressure dial until pressure is shown as 27.5 (stickered)
  • Initial pressure shown is correct pressure
There are 2 modes: 

Manual treatment - use the inhale/exhale switch

Automatic treatment - machine will run through cycles automatically. 
  • Make sure all dials are set to the stickers.
  • Hang mask on bridge of nose and lower over mouth.
  • Use reasonable force to get an effective seal.
One cycle consists of: 

Inhale - 2 seconds
Exhale - 2 seconds
Pause - 0.5 seconds

To clean tubing, wash in warm soapy water. 
To clean face mask, wipe with facecloth. Never use wet wipes as this can rot the silicone.
If there is any visible phlegm in the tubing or filter, change immediately. Any replacements can be ordered at the ventilation office.