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.