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.