Thursday, 27 January 2011

Visit from Speech Therapist

Lynsey asked Rachael about the Tobii Eyegaze and its usefulness. Rachael gave a demonstration and showed Lynsey her computer station in her bedroom. Rachael asked if more ports could be set-up in the house, Lynsey said she would look into this. Rachael discussed what had been going on since Lynsey's last visit and said there was an error message that kept coming up when computer was switched on. Lynsey said she would try and get the problem fixed.

Thursday, 20 January 2011

Wednesday, 19 January 2011

Clinic at H Hospital

Dr E read through Rachael's notes. Dr E said memory function would be reduced due to the medication she was taking. Rachael explained that Pregabalin had been reduced since her last visit. Dr E asked whether Rachael had had her 3 monthly blood test to check her Riluzole levels - advised will book with GP. Dr E prescribed suppositories for constipation so Rachael did not have to keep increasing her Movical consumption. Rachael discussed the problems she had been having with District Nurses. Dr E made notes. Dr E queried how suprapubic catheter was and Rachael said she had been plagued by infection. A swab was taken of the stoma site but as it had just been cleaned, the stoma site was clear. Dr E advised Rachael to see Practice Nurse at her GP's for a swab. Rachael asked Dr E whether she would be eligible for Bipap as found the experience in Wy Hospital most helpful and rejuvenating. Dr E said he will speak to Dr B and recommend that Rachael be given this.
A nurse checked Rachael's blood gas levels but this caused 2 errors and could not be read by the machine. Dr E advised against collecting a blood sample from Rachael's wrist. A nurse also checked Rachael's finger pulse oximetry which came back as normal - 97. Rachael stressed to Dr E that her neck was becoming unbearably painful. Dr E referred her to the Physio on ward, who said Rachael needs pain relief and could do nothing else for her. Dr E said he will send prescription for pain relief to GP.

Tuesday, 11 January 2011

Email from MND Specialist Nurse

Rose emailed asking if Rachael would like to move her appointment with Dr E to tomorrow (12/01/11). Rachael replied that she would keep her original appointment (19/01/11) due to lack of transport.

Monday, 10 January 2011

GP Appointment

After a blocked nose earlier in the week, Rachael began to experience excess secretions from the catheter stoma site and the catheter was becoming slow to drain. Rachael was urinating from urethra, had sharp stabbing pains every 20 minutes, and blood clots (size of tack heads) in urine. Dr G found that urine test from last visit showed an infection, further sample was taken along with a swab of the catheter stoma. Prescription for antibiotics, Trimethoprim 50mg/5ml suspension to be taken twice a day, given.

Saturday, 8 January 2011

Letter received from Dr A

Copy of clinic notes from 02/12/10 sent to Dr G confirming Norethisterone to be taken 3 times a day from the 5th to the 26th day of menstrual cycle until the next review.

Thursday, 6 January 2011

Email sent to MND Specialist Nurse, Dietician and Speech Therapist

Email was sent advising that Rachael was ill. 
Claire (Dietician) replied saying that unless the feed was creating a problem, she could not help. 
Rose (MND Specialist Nurse) replied advising paracetemol for the time being, and possibly antibiotics from the GP if symptoms persist.

Saturday, 1 January 2011

Jan 2011 In which I catch a cold

Still got cramps and I'm stuck in bed instead of watching fireworks and stuff. Really feeling sorry for myself! NYE and no hug! 
01/01/2011. 5.34
Slept funny! neck and back ache but in better spirits.
02/01/2011. 3.30am
foot slipped in splint agony making everything tense then ache  
02/01/2011. 21.10
exhausted. Done nothing but shattered no aches though.
Head lolled when I gagged for air about 1hr ago. Neck really hurts. Foot in wrong position ow.
03/01/2011. 19.48
had fun, went out, spent time in relaxed company. Just my neck ache. Back on norethisterone and I've stopped bleeding.
04/01/2011. 04.21
Been awake since 2am with sore neck back thighs and legs. Ankle and foot have joined in and my catheter won't drain so I've wee'd.
04/01/2011. 02.30
Shattered but relaxed.
05/01/2011 04.37
Argh I have a runny nose. I can't hold a tissue let alone lift my hand to my face. This is so frustrating. It's kept me awake for 1.5 hrs.
05/01/2011 18.44
Can hardly think so hot and tired, have phlegm streaming from nose, eyes on fire, choking on catarrh.
06/01/2011 1.41am

I am full of stuffy hotness and gunk making me gag it's running down my face and throat can't cough or blow or wipe.
06/01/2011 5.42pm

blocked nose headache and backache
06/01/2011 11.32pm
sleeping fitfully all day full of cold. Shivering.
07/01/2011 3.26am
Constipation pain. Can't sleep. Can't wipe my nose. Legs and back hurt.
07/01/2011 7.57pm
Very snotty nose. Headache. Hot and tired. Diarrhoea.
08/01/2011 4.05am
Full of a cold. Difficulty sleeping. Can't catch my breath. Legs aching. Can't get comfy.
08/01/2011 6.02pm
Managed to get out, Still snotty but much improved.
09/01/2011 4.26am
Diarrhoea. Catheter maybe blocked - urinating from urethra. Sharp stabbing pains. Blood clots in urine.
09/01/2011 8.31pm
Still experiencing sharp pain every 20 minutes or so. Clots are size of a tack head.
10/01/2011 3.14am
Severe shooting pains in my urethra. Blood in urine. Small clots. Back ache. Difficulty catching my breath. Headache.
10/01/2011 4.01pm
Excruciating pain every 20 mins. Doctor's appt in an hour.
11/01/2011 5.14am
Catheter and urine problems greatly relieved already - only went to the Doctor yesterday. Antibiotics ftw.
11/01/2011 7.32pm
Tired but had a good day. Got loads of physio. feel quite relaxed. Clean and fed. Yoghurt is good.
12/01/2011 2.20am
Can't sleep. uncomfortable. Postural pain. Have to gasp for breath. Headache.
12/01/2011 8.14pm
Spent too much time on my own today. Slight computer head. Neck ache but not severe. Pool of drool on my clavicle.
13/01/2011 4.38am
Leg cramps. Too hot. Generally uncomfortable. Really need to bend my leg. Bitten inside my mouth and tongue ow!
13/01/2011 6.10pm
Very tired, but happy. Spent a few hours playing with my friend's Grandson we both dribbled!
14/01/2011 3.28am
Pillow slipped. Neck sore. Feet and legs heavy and burning. Back and shoulders hurt can't cough I really want to roll over.
14/01/2011 9.20pm
Had a little nap in my chair. Baking with lovely carer. Only glitch has been neck pain and difficulty in holding my head upright.
15/01/2011 3.42am
Relatively pain-free. Could do with a leg stretch. Keep biting my mouth and drooling.
15/01/2011 3.37pm
Severe constipation earlier on. Have now evacuated but extremely tired. Neck ache continues to plague me. Muscle weakness.
16/01/2011 5.04am
Drooling, choking and struggling to catch my breath. Positional pain and a head ache.
16/01/2011 8.22pm
After a fairly ropey morning with aching kidneys and stomach pain everything seems to have settled down.
17/01/2011 4.41am
Unpleasant combo of constipation/diarrhoea. As a result every bit of me is uncomfortable, stinging and tense.
17/01/2011 5.37pm
neck ache really bothering me. I am awash with heated wheat bags and paracetamol. My right shoulder is very stiff.
18/01/2011 3.19am
Difficult to catch my breath. Tired but can't sleep heel, hips and shoulder blades hurt.
18/01/2011 4.07pm
went through rom exercises shattered but neck pain vastly reduced.
19/01/2011 5.09am
position in bed wrong neck aches
19/01/2011 7.32pm 
dehydrated and exhausted after travelling to clinic.
20/10/2011 4.29am
nose running, coughing too hot need to move.
20/01/2011 7.27pm
easy day good company plenty of liquids, a long shower-just wish it was a bath.
21/01/2011 2.51am 
shoulder and neck painful for the last hour really need to be asleep
21/01/2011 10.02pm
sadly no hydrotherapy but found a log fire to bask by until daughter came home
22/01/2011 2.47am
foot hurts need to bend knee dribble down my neck generally uncomfortable and tired
22/01/2011 7.18pm
went out to lunch lasted all day sleepy now, may nap!
23/01/2011 3.23am
neck still hurts, tired, grouchy need to move, constipated kidneys ache due on
23/01/2011 4.32pm
Went outside briefly felt good for it. Clean hydrated tired
24/01/2011 5.07am
Sore heels and bottom. Aching shoulders and neck. Constipated.
24/01/2011 10.06pm
Relaxing day. Went out for the evening, good company, watched a game of pool, even managed a row with some bigots!
25/01/2011 3.46am
Foot uncomfortable, leg cramp, back and neck ache, need the toilet
25/01/2011 7.05pm
Spent the day cleaning and preening. Relaxed.
26/01/2011 3.12am
Postural pain. Difficulty catching breath. Really need to bend my knee.
26/01/2011 5.08pm
Slow and dragging day. Fair amount of neck ache. Speech slow and laboured more than usual.
27/01/2011 2.43am
Neck ache worse. Considerable back pain. Really need to move. Breathing laboured.
27/01/2011 9.28pm
Still struggling with speech periodically. Napping throughout the day. Very tired.
28/01/2011 4.13am
Been awake for a while. Postural pain. Really sore hips.
28/01/2011 7.55pm
Incredibly tired after a lovely day. Cancelled my travel plans. Lovely carer is pampering me.
29/01/2011 1.17am
Soiled myself. Sore and aching. I've got many more hours of this. Feeling quite sorry for myself.
29/01/2011 10.19pm
Relaxing after an exciting day watching daughter, carer and cat play with the new telly.
30/01/2011 4.51am
Need to move. My shoulder seems to have seized up and my pad has a crease in it which is painful underneath me.
30/01/2011 6.24pm
Pleasant day helping daughter with revision. Overseeing spring clean of the living room. Shattered now. Speech still "iffy".
31/01/2011 4.03am
Soiled myself. Really uncomfortable and sore. Everything aches.
31/01/2011 10.07pm
Tired but relaxed.