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.