Tuesday, 25 October 2011

Email received from Macmillan Nurse

Claire emailed saying she had been in touch with a hospice doctor, who confirmed crushing drugs seemed to be effective,although there is no research available to support this. Claire also said she had passed my email address onto the Physiotherapist so suction machine training can be organised.

Email sent to Macmillan Nurse

Rachael informed Claire of Dr G's advice. Claire responded and said she would email her next week.

Monday, 24 October 2011

GP Appointment

Dr G came upon Rachael queueing for a flu jab and pulled us into her office. Dr G administered the flu jab herself. In regard to drug query, Dr G confirmed Rachael should crush Riluzole and open the capsule of Pregabalin to flush through the rig. She also said she would prescribe Baclofen and Ferrograd in liquid form, which we should mix with water to ease the enteral administration. Dr G said she would get back to the Macmillan nurses about training on the suction machine.

Friday, 21 October 2011


Jo did cursory range of motion exercises, but because she found Rachael difficult to understand, she misinterpreted her. She did get the full length of time in the pool this week,but again, the lack of meaningful communication meant that the exercises were less effective.

Tuesday, 18 October 2011

Visit from Macmillan Nurse

Claire asked Rachael questions of a medical, social and emotional nature. Claire agreed to make enquiries into arranging training for the suction machine, not by the district nurses, but by the Physiotherapist or through GP surgery. Claire offered to refer Rachael to the Hospice for one day per week for a maximum of 13 weeks. She opted to hold it in abeyance until she needs it. Claire left leaflets explaining what Macmillan Nurses actually do.

Monday, 17 October 2011

Visit from Wheelchair Services

Mark and Gary brought an extra control panel, headrest and spare wheelchair cushion. Mark said he was going to make adaptations to the prototype control panel and bring it when he next visits. He agreed to source a chest restraint and bring a different headrest for Rachael to try out, for greater neck support. He also left a Roho cushion and leaflet for additional products Rachael might like to buy for herself.

How to use extra control panel:
Remove panel from side of chair (unscrew and slide out)
Place in bracket at front of current control panel and tighten
GREEN: Rabbit
RED: Power button
To hoist Rachael, remove extra panel and replace in holder at side of the chair.
DO NOT remove/unplug wires

How to use headrest:
Headrest is adjustable and Rachael will need this moving as required
DO NOT leave in one position

How to use Roho cushion:
When Rachael is out of the chair, push the green button at the front and "plump" the cushion
Put Rachael back in the chair and when she is comfortable, push in the red buttons.
Check there is between half and one inch of air between the chair base and the bony area of Rachael at the back and sides.
If not enough air, use pump to inflate (2/3 pumps max), the valve twists to open and close
Rachael MUST be out of her chair when inflating cushion
Pump is left in the toolbox

Friday, 7 October 2011


Jo did cursory range of motion exercises, but because she found Rachael difficult to understand, she misinterpreted her. Jo thought Rachael was cold so got her out of the pool early. The lack of meaningful communication also meantthat the exercises she did do, were less effective than usual.

Thursday, 6 October 2011

Call Received from GP

Rachael advised me to inform Dr G of anything that may need to be on her medical file.I spoke to Dr G about Rachael's choking episode. Her response was to call 999 if it happens again and said she would prescribe drugs to thin her saliva. I also advised Dr G that Rachael's Mirena Coil no longer seemed to be working. Dr G advised her to start taking Norethisterone three times a day to prevent further bleeding. I also told Dr G about Rachael attending a rig tube change later today. Dr G said she would make a note.

RIG Change at H Hospital

Rachael attended an appointment for rig tube change. All went well. Rachael was aprehensive before the procedure, but the surgeon agreed to use extra gel as local anaesthetic and if necessary, could inject it around the stoma. There was some difficulty positioning Rachael on the trolley but eventually the tilma tube was replaced like for like. The surgeon commented that the stoma was in much better condition than when he last saw it. Rachael remnded him that the last change had been over 18 months previously, when the tube was accidentally ripped out. He said it sems to have healed well and is well-established. The surgeon agreed to email the xrays to the MND Specialist Nurse so she could forward them to Rachael as requested.

Saturday, 1 October 2011

October 2011. 5n which I have stomach ache and wonder whether my feed is off.

01/10/2011. 4.20am
bottom stretched and breaking feels as if I'm lying on cheese wire.
01/10/2011. 6.58pm
Carer took me to Liverpool to see my sister. drained and still bleeding heavily but worth it.
02/10/2011. 4.04am
Passing glass sensation. Too hot and dehydrated position uncomfortable.
02/10/2011. 8.42pm
Bulk of the day spent writing about armchair anarchy and napping between watching politics and protest unfold. Still have stomach cramps.
03/10/2011. 3.28am
Stomach ache - want to curl up and cry.
03/10/2011. 5.28pm
Great day with carer. Bought local produce & harvested from my garden for a delicious tea. Slight wobble breathing wise fixed by bipap.
04/10/2011. 2.06am
Slept deeply in my chair in the evening now wide awake. Too hot and aching catheter hurts legs heavy neck and ankles sore.
04/10/2011. 5.28pm
Met a really cool lad who came round to talk gardens and permaculture. Played in the garden for hours.
05/10/2011. 4.17am
Fell asleep in my chair at 6.30pm. woke briefly to get into hoist and bed. Bottom stretched and uncomfortable limbs pressing on bed.
05/10/2011. 8.12pm
Sleepy after a day of doing nothing. Touch of the runs earlier but then ate more than usual orally.
06/10/2011. 4.57am
Cold sweating heart rate increased stomach in knots worrying irrationally about rig change tomorrow.
06/10/2011. 9.50pm
RIG replacement went much better than I had feared. Weed and brandy soothed the aching
07/10/2011. 6.46am
Slept well with some aching. I have noticed increased teeth grinding for a few days and excessive chattering in slight cold.
07/10/2011. 5.09pm
not amazing hydrotherapy today but the water was excellent as ever. Delicious dahl for tea made by a friend.
Slept well after another light weed and brandy evening. All gone now but I woke feeling refreshed. A rare treat.
08/10/2011. 4.15pm
Lovely day spent with my daughter. Techie carer is investigating PLM suggestions for eyegaze.
09/10/2011. 4.56am
Another good night's sleep although I am now aware of growing discomfort around my hips and buttocks.
09/10/2011. 8.17pm
Wednesday carer covered sick Sunday carer's shift quiet day
10/10/2011. 5.18am
Woke twice with positional discomfort got to sleep fairly quickly afterwards feeling refreshed now though hips hurt.
10/10/2011. 1.26pm
going through cook books with carer for something that I can eat and daughter will enjoy. Having enormous fun. Skyped aussie sister.
11/10/2011. 5.28am
Slept well eventually after another choking episode - not as severe as last time but scary enough.
11/10/2011. 7.02pm
pleasant day bar a couple of spluttering incidents, very tired. Regret I can't manage the deep conversation my daughter wants.
12/10/2011. 3.19am
horrible stomach ache, hot and cold sweats and I've poohed the bed. Wretched.
12/10/2011. 8.17pm
Plasterers working upstairs solicitor visit at midday daughter's school forms to attend to. I'm exhausted.
13/10/2011. 5.09am
generally uncomfortable with stomach ache and diarrhoea
13/10/2011. 10.55am
coffee and a cleanup and I feel semi human. playing with computer with carer atm emoticon smile
13/10/2011. 8.32pm
Dentist was thankfully uneventful.
14/10/2011. 5.37am
Another night with an upset stomach. Wondering if my feed is off?
14/10/2011. 9.49pm
Pottered about and discussed politics on line. Sorted some financial guidelines with daughter and napped on bipap.
15/10/2011. 5.53am
After  initial difficulty slept well needed turning a few times but no particular pain.
15/10/2011. 9.27am
An interesting day ahead. Going with carer and his son for a ride on some diesel trains.
15/10/2011. 6.33pm
Brilliant day out. Felt a bit awkward spare part with carer's family but only a bit. Met a lovely couple chatted about beer.
16/10/2011. 4.19am
Stomach ache again. Hot dehydrated and constipated. cold sweats.
16/10/2011. 5.03pm
Unable to effect BM but mobility of w/chair eased stomach pain. Went to pictures with niece. Lion King. She was captivated.
17/10/2011. 4.27am
Stomach pain back with a vengeance I'm so tired. Feel nauseous.
17/10/2011. 11.32 pm
well enough considering that I have stomach ache and have spent hours talking to the wheelchair engineers.
18/10/2011. 4.39am
woke choking eyes streaming carer communication difficult
18/10/2011. 11.45am
I poohed! Stomach still grumbling but I'm greatly relieved.
18/10/2011. 9.06pm
Exhausted after Macmillan nurse initial visit Sticky mouth and throat causing me to gag.
had to take an extra baclofen to combat spasms.
19/10/2011. 4.47am
Painful position has woken me several times. It's very cold making me shiver uncontrollably. Painfully biting mouth and gnashing teeth.
19/10/2011. 1.59pm
Eyes stinging and tired. Face itching. Managed to eat lunch. Mouth aching but less sticky.
20/10/2011. 3.57am
Need to move. Buttocks very painful, knees ache.
20/10/2011. 7.19pm
Went to Mum's, brief visit Carer's cold worsened throughout the day. I feel a stuffy head and sore throat coming on-possibly Psychosomatic.
21/10/2011. 3.17am
Sleep disturbed uncomfortable and dehydrated. Can't stop grinding my teeth and biting my mouth.
Exhausted! Good float at hydrotherapy but disappointed by ineffective physiotherapy exercises.
22/10/2011. 4.38am
position pain growing discomfort. Hips and back hurt.
22/10/2011. 6.55pm
Shattered : family get together. Over 50 of us from many continents. No one could understand a word I said There was lots of love though.
23/10/2011. 4.42am
Body clock totally out of synch but other than being wide awake when I should be fast asleep I'm pretty ok.
23/10/2011. 4.55pm
Feeling slightly more human though neck is hurting a lot.
24/10/2011. 3.24am
Stiff joints positional discomfort sore buttocks and an infuriating twitch in left toes
24/10/2011. 10.28am
Much better now I'm up and about but starting flu jab day I'm worn out.
24/10/2011. 5.33pm
Flu jab went fine Dr advises that I crush tablets and administer all medication enterally from now on due to choking episode.
25/10/2011. 4.26am
Horrible stomach ache. Have to move, can't cope.
25/10/2011. 7.27pm
Stomach ache continued all day but regular hydration seemed to ease the pain. Exhausted.
26/10/2011. 6.11am
Slept well straight through bar once for turning. Didn't have feed on overnight wonder if it could be off?
26/10/2011. 7.06pm
Quiet day very cold outside. Enjoyed messaging a long lost friend but possibly overdid it slightly eyes tired difficult/mouse control
27/10/2011. 3.39am
Bottom stretched and sore. neck aches, legs and hips heavy back aches. Teeth grinding badly.
27/10/2011. 9.44pm
Nice lazy day, took daughter to the bus to spend a few days with her auntie then back home for rom exercise and cake.
28/10/2011. 7.24am
Lovely night's sleep following weed and brandy evening. The tiniest amount really makes a difference.
28/10/2011. 8.19pm
Made stew and ate plenty. Daughter came home asking for fancy dress ideas. Exhausting but fun.
29/10/2011. 5.47am
Some discomfort but positional and easily fixed glad to have another night no feed no stomach ache
29/10/2011. 10.13pm
Saturday carer is still sick Day out at the Media Museum with my p.a. and his children. Ate loads! still feel strong from Thursday.
30/10/2011. 1.33am
great hilarity as daughter phoned from a party for a curfew extension and woke a befuddled carer who thought I was in distress.
30/10/2011. 4.12pm
After not a lot of sleep I am feeling lethargic. Daughter has been lovely though perhaps in an attempt to avoid revision homework!
31/10/2011. 5.43am
Quite stiff and aching woke a couple of times but another night no feed no stomach ache. Really hungry right now.
31/10/2011. 7.17pm
had guests for dinner. Lovely evening and I had a run out in my chair locally this afternoon.