Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Spotlighted Blogger: on Patients Like me Website...  is me! 


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Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Welcome to the third installment of our new blog series featuring patient bloggers. Last week, we introduced you to Parkinson’s blogger Steve, and today, we’d like you to meet Rachael, a three-star member who has been a part of PatientsLikeMe’s flagship ALS community since the very beginning. In fact, she joined PatientsLikeMe in May 2006, just two months after being diagnosed with this progressive neurological disorder (also known as Lou Gehrig’s disease). Her blog is called “Notes to Self,” and it’s a candid and charming journal of the full life she leads, despite her condition.

1.  What role does your blog play in your life?

As the title suggests, my blog is [filled with] “Notes to Self.” I use it as an aide memoir and an excuse to be verbose as my voice fails me. It is useful to direct people who ask about events in my life when repetition of the story would be tiring. I also find that it helps me to work through my often complicated emotions in dealing with the disease and its incumbent challenges.

2.  Tell us about using an eye gaze system to write your blog posts and more.

As I have blogged on many occasions, the Eye Gaze System [a communication system directed by eye movements] is invaluable to me. I was fortunate enough to get the system before my voice and keyboard dexterity gave up entirely. I have become used to using it, and the transition has been less traumatic than it otherwise might have been. Low-tech communication is all very well in an emergency but cannot compensate for speech.

The Eye Gaze allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies. The Eye Gaze also allows me to indulge my “inner geek” and access the Internet and Skype to communicate with far flung friends and family.

3.  You’re a big user of the InstantMe tool at PatientsLikeMe.  Why?
I have always been quite an obsessive character. I am possibly overworking the PatientsLikeMe facility. I find it of immeasurable help to have a diarized record of my progression as it relates to my daily life. I tend to ramble, so I find the strict regimen of 140 characters helpful.

A while back, I worried about my memory loss. I had a test done, and it showed no signs of the frontal lobe dementia that terrified me. My consultant reassured me that my short term memory loss was within “normal” parameters. To me it was still unacceptable. Because I have so many small things to remember that people without this condition would find insignificant, something has to give. Having a log helps my recollection. It is also useful for caregivers to reference and saves me effort and energy that I often do not have. It makes my clinical review a whole lot easier and accurate.

4.  In your last post, you talk about reconnecting with friends you’d pulled away from.  Tell us about that.

When I was first diagnosed, I was given the usual prognosis “18 months to live”. Some friends ran away but I realize now that I also withdrew from many people in my struggle to come to terms with the disease. 18 months has come and gone a number of times. Over time I had to re-evaluate my response. Instead of planning for dying I needed to plan for living. Part of this included giving people the opportunity to be involved in my life.

It is, on reflection, a patronizing thing to withdraw friendship without at least offering the choice. Life with ALS is difficult, but the challenges are not insurmountable. I thoroughly enjoy my life and my friends both old and new. Anyone reading my “InstantMe” [history] will know that I have an active social life and a busy home.

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This entry was posted on December 19, 2011 at 12:16 pm and is filed under ALS. Tagged: ALS, communication system, eye gaze system, friendship, InstantMe, journal,lou gehrig's disease, memory aide, memory loss, Notes to Self, patient blogger,prognosis, Rachael. You can follow any responses to this entry through the RSS 2.0feed. You can leave a response, or trackback from your own site.

1. Thank you for this Rachel. I read your comments about friendship with great interest, Friendship is the staff of life.
   I am still ambulant and have found the level of help have kept my morale up. I wish you the very best of luck in the festive season and beyond
   Comment by Roland Evans — December 23, 2011 @ 10:19 am
2. I am feeling really good reading this post. I think that this post will encourage all people who are disgnosed by ALS or Lou Gehrig’s disease to enjoy their life and live it like Rachael is living.
   Comment by Michael — February 5, 2012 @ 3:50 pm

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Choking episode

Rachael experienced a choking episode, exacerbated by food. There were 2 PA's  on hand, but both were quite shocked by the severity of the attack. After some initial communication difficulties, suction machine was used successfully. Attack abated leaving Rachael with weakness and a sore throat, prompting staff training in use of the eTran frame, speakbook and suction machine.

Hydro

Jo did not complete full range of motion exercises but did attempt "seaweeding" with Rachael's arms which was unsuccessful. Jo attempted walking exercises but only completed half a width before leaving Rachael to float. Communication was difficult as usual.

Respiratory Appointment at Wy Hospital

Blood gas test was normal. Dr B noticed Rachael's Bipap use had not increased and was happy for Rachael to continue with its use.

GP Appointment

After 15 unsuccessful attempts at drawing blood from Rachael's hands and arms, the practice nurse finally got a sample. Test results came back as fine.

Catheter change at TG Hospital

Rachael had to wait for an hour as clinic was running behind. Stuart experienced less resistance and 'cuffing' during the catheter change. This was a 5 week appointment. Next appointment made for 6 weeks time.

Hydro

Sharon went through full range of motion exercises focusing on walking. Rachael managed to do 3 widths of the hydro pool, twice. Sharon dislocated Rachael's shoulder underwater, there was no pain and Sharon popped it back in straight away. Rachael felt no ill effect, and felt she really benefited from this session.

December 2011. In which I have dodgy bowels and a fun Christmas.

01/12/2011. 1.03am

Sore bottom, frozen stiff feet, cramp in left hand.

01/12/2011. 4.02pm

quiet day getting to grips with some paperwork

02/12/2011. 5.07am

Passing glass sensation stronger than usual. Sore neck and shoulders. Hips heavy and aching.

02/12/2011. 5.43pm

shaky start with diarrhoea and running my chair halfway up a door, things have settled. Still getting hand and leg tremors, jaw locking.

03/12/2011. 12.23am

Ankle has slipped and turned painfully. I'm wide awake grinding my teeth. Catheter sore, passing glass sensation.

03/12/2011. 9.38pm

Had a lovely lunch in Cheshire with my daughter. We laughed and she was a tonic. My dodgy bowels held out until we got home.

04/12/2011. 5.27am

Feet freezing and turned over but a reasonable night with only one discomfort wake.

04/12/2011. 8.08pm

shaved, showered and exercised worn out but in a good way

05/12/2011. 4.47am

Woke carer a couple of times but slept straight after each wide awake now but had a long evening nap.

05/12/2011. 8.19pm

Excellent hydrotherapy although I dislocated my left shoulder. Delicious stew and good company

06/12/2011. 3.11am

Catheter bag fell off the side of the bed tugging communication is even harder when I'm in pain

06/12/2011. 4.08pm

Catheter change at the hospital has been worse but still quite painful going to bed now so I can make it to a science gig tonight

07/12/2011. 1.13am

Uncaged Monkeys gig was amazing both carers needed for toileting and keeping crowds from crushing me but I'm elated.

07/12/2011. 12.34pm

blood testing at gp surgery hurt and my joystick arm (left) gave up halfway home in the bitter icy-blast I'm really tired

08/12/2011. 5.32am

Restful sleep but can no longer use the bed control Carer needed for adjustments Woke at 5 feeling refreshed with sore ankles

08/12/2011. 7.07pm

Good clinic at the respiratory centre then visited my parents. Daughter revising for GCSE I'm napping

09/12/2011. 3.16am

Bottom feels stretched and uncomfortable Sore ankles and neck  Need to move itching badly

09/12/2011. 8.59pm

A productive finance meeting with my staffing accountant. I sent off my niece's present. Sadly too tired to manage friend's gig.

10/12/2011. 4.13am

Cold woke me! My body clock is out of synch. I can't sleep. My nose is frozen and runny and my legs and shoulders ache

10/12/2011. 6.19pm

took my small niece and nephew to see Wind in the Willows - tiring!

11/12/2011. 2.24am

BM in bed Sore itchy groin Desperately uncomfortable Carer accidentally took phone handset home so no emergency contact

11/12/2011. 7.47pm

Fairly slow day tired and achy but nothing specific. Probably due a rest and change the pace down a gear

12/12/2011. 5.17am

Quiet night. Poohed a little but carer cleaned it. Stiff joints but otherwise fine.

12/12/2011. 9.40am

Just had the worst bout of choking so far. 2 experienced PAs were freaked out by it. Dealt with it professionally but scared

12/12/2011. 5.27pm

Needed to relax as increased spasticity and cramping. Good float at hydrotherapy NOt as good is still pretty close to excellent. Shattered.

13/12/2011. 6.11am

After a late tea delayed by daughter's Christmas shopping I was flat out in my wheelchair waking only for pain relief from period pains.

13/12/2011. 8.38pm

Boring day dragged. Wednesday non driving carer covering for Tuesday carer's holiday. She does make a cosy evening though.

14/12/2011. 2.27am

Menstruating very heavily. Need to change the sheets. That's my Mirena coil worth the effort then / sarcasm.

14/12/2011. 7.20pm

Dragging day 2 not helped by household of 3 sulky, hormonal women and a burst pipe in the kitchen.

15/12/2011. 2.55am

Feet freezing, legs cramping, groin feels like it's been kicked by stampeding cattle, kidneys and neck ache, runny nose.

15/12/2011. 3.40pm

Trying to relax through the period pains, the neck and back ache and general grouchiness to get to a New Model Army gig tonight.

15/12/2011. 11.57pm

Awesome gig.

16/12/2011. 4.31am

sharp pain in lower back need to pooh. On reflection, it's been a good few days! Feel sick, which puts me in fear of choking.

16/12/2011. 9.07am

A good deal better after BM Lower back and neck still ache and nose still runny but lovely carer is looking after me.

16/12/2011. 7.03pm

Fairly wiped out but a fun day. Dribbling and chewing my cheek a lot.

17/12/2011. 5.50am

Reasonably good night. Sore hips and shoulders and a heavy uncomfortable bleed but feeling the benefit of sleep.

17/12/2011. 7.07pm

Lovely day ferrying my daughter around and doing the weekly shop. Could do with an end to this period now.

18/12/2011. 4.33am

Buttocks sore and stretched legs heavy and pressing into the bed shoulders twitching neck aches.

18/12/2011. 7.47pm

Quiet restful day.Grinding and gnashing of teeth quite apparent.

19/12/2011. 4.33am

uneventful night woke a couple of times with random positional issues. Buttocks sore and stretched and groin feels grainy period ending.

19/12/2011. 4.58pm

Better hydrotherapy session than the last. Physiotherapist had an observer and did a full ROM workout.

20/12/2011. 2.11am

Buttocks sore and stretched Legs heavy Neck and shoulders ache Runny nose all over my face. Daughter and her friend giggling to 2am.

20/12/2011. 9.47am

Seem to have slept all day. Napping on and off and an extra hour on bipap in bed.

21/12/2011. 4.05am

Seem to have done nothing but sleep. Still tired, sore buttocks, cat giving me a dead leg.

21/12/2011. 8.49pm

Panto with niece wore me out. Daughter socialising til late. I want to stay awake to know she is safe.

22/12/2011. 3.03am

Sore buttocks and groin feels grainy. Ankle is painful from foot drop. Feet freezing. Neck aches.

22/12/2011. 9.08pm

Fun day sorting through Christmas gifts for nieces and nephew. Quite pronounced dribbling in bipap.

23/12/2011. 3.13am

Hips and legs sore Ankles painful and feet twitching Dribbling and itching and chewing my cheek.

23/12/2011. 7.04pm

Very tired Spent the day instructing my PA in cooking for Christmas dinner Fun but exhausting.

24/12/2011. 2.05am

Kidney pain severe Diarrhoea in bed

24/12/2011. 7.32pm

Lovely Christmas eve despite the seriously tiring diarrhoea, which seemed to know the worst moments to strike!

25/12/2011. 1.53am

Woke to wish daughter a merry Christmas and can't get comfy.

25/12/2011. 8.21am

Gifts exchanged, dinner prepared, daughter off to deliver presents. Stomach settled and behaving nicely. Just the neck ache to sort.

25/12/2011. 9.30pm

Quite merry, full of food and very tired. Festive day with PA and his partner. Basil Cat did not get on with their dog!

26/12/2011. 4.19am

slight toe twitching excessive dribbling and a slipped pillow all sorted by PA.

26/12/2011. 9.30pm

One small choke and several naps, a trip to my sister's and a minor plumbing disaster.

Good Boxing day.

27/12/2011. 4.53am

After all the napping I ought to be better rested but am quite tired. My feet have been so cold. I have shooting pain up both legs.

27/12/2011. 12.36pm

Bought a lovely brown sofa and started making my costume for the party on Thursday. Thanks due to my arty, crafty PA.

27/12/2011. 8.23pm

lit. watching paint dry on my train costume. Doing ROM exercises to alleviate cramping.

28/12/2011. 5.17am

Feet freezing, legs cramping. Don't want to wake anyone but can't bear it.

28/12/2011. 7.58pm

Spent a while on bipap then had a restful day. nearly blown over on the way to the chemist's.

29/12/2011. 9.18am

Face really itchy driving me to distraction. Arm and left hand twitching, leg cramps.

29/12/2011. 9.54am

Random discovery: I can no longer lick my lips or stick my tongue out!

29/12/2011. 10.30pm

Family came for fancy dress. I felt fairly isolated amongst the hubbub but loved seeing everyone. Children played in my cardboard costume.

30/12/2011. 3.19am

Woke up dehydrated and groggy. Buttocks sore and stretched, legs heavy and pressing into the bed. Neck quite sore but not as bad as it was.

30/12/2011. 8.12am

My little Glaswegian niece is the most wonderful waker-upper. She chats away to me and all my discomfort is irrelevant.

30/12/2011. 9.39pm

Phew! Some semblance of normality. Tea was lovely. Relatives have got safely back to Scotland. new sofa has arrived. Dribbling profusely.

31/12/2011. 4.06am

Severe neck pain. Pillow feels flat.

31/12/2011. 10.27am

Tired out neck sore but resting, trying to take it easy for visitors tonight.

31/12/2011. 10.42pm

Thanks to amazing PA I am enjoying New Year's Eve. A touch of diarrhoea and a coughing fit nearly confounded my well laid plans.

Hydro

Jo didn't do the full range of motion exercises and concentrated on the "walking technique" that Sharon had shown her. Unfortunately, Jo is taller and the arm position was quite painful. Due to communication difficulties, Jo continued to attempt that manoeuvre until the end of the session.

Visit from Wheelchair Engineer

Mark brought with him a new headrest and harness for Rachael's chair and after a discussion, said he would make another appointment to bring armrests and an assistant control panel.

Hydro

Sharon did full range of motion exercises, focusing on Rachael's left arm and shoulder as Rachael reported that her arm had been generally weak and had even seized up completely whilst driving her wheelchair any distance. Sharon looked at Rachael's fingers on both hands and suggested that she should make a referral to the handsplint specialist on site.

Visit from Occupational Therapist

Yvonne came and agreed to install a ceiling track in the living room so Rachael can transfer to sit on the sofa.

Visit from Physiotherapist

Angela came and demostrated how to use the Suction Machine. Angela also took Rachael's email address so she could send a copy of instructions before she posts it. Angela took the speech therapists number for future reference. 
Filter - Do not clean - must be replaced every 3 months
Yankeur (Mouth Piece) - wash and sterilise after every use
Recepticle (Spitoon) - wash in soapy water after every use
Hose - wash in soapy water after every use
The suction machine should be charged overnight. An amber light will show when charging. A green light will show when fully charged. Angela said she would post extra yankeurs.
Instructions: 
Test pressure before every use by putting hand over tube. The pressure should never exceed 20k/Pa (inside measurements).The best pressure for Rachael is between 10 and 15k/Pa. This can be adjusted on the dial below the pressure window. 
Move yankeur from the top to the back of Rachael's mouth, and from the front to the sides of the tongue until clear of saliva.

Catch up

I have had a hectic few days. On Friday, I cooked an amazing stew. When I say cooked, I mean that I bullied my PA to obey my instruction. We really enjoy our Masterchef boot camp sessions. My PA thinks he can't cook and I enjoy teaching him the rudiments. Bronagh spent the evening with me devising and designing her costume for a fancy dress Halloween do on Saturday.

On Saturday, my regular PA was off sick and so I went with Friday's PA and his 2 children to a museum. The Bradford Media Museum was enormous fun. Fortunately, his 10 year old was happy to entertain his 2 year old on the interactive exhibition whilst we browsed the photography displays, which were fantastic.

Outposts: Donovan Wylie was a disturbing and thought-provoking series of photographs from the 70s and 80s in Northern Ireland showing military instillations and an insight into the Maze Prison. It brought back many memories and also showed the frightening range of military intervention on the landscape itself. There was also a series from Afghanistan, but with less point of reference for me. It made less impact. We came out of this first floor exhibition greatly affected with a hollow feeling.

David Meadows: Early Photographic Works cheered me up no end. It follows a variety of people photographed in the 70s in Salford and Manchester and catches up with them in the 00s. I spent the exhibition transported down memory lane exclaiming at each shot, “I had that wallpaper!”, “I had that tanktop!”.

On Sunday, I was shattered and good for nothing, which was a relief as I had nothing to do. My daughter and her friend had been to a party and woke me in the early hours after which, I couldn’t sleep.  On Monday, Friday PA was back doing his own shift again: more cooking. On Monday evening, his girlfriend came to tea and we showed off our new skills. I had taught him to make sauce from scratch and he was like a puppy with a new trick explaining how he had made a roux. I was very proud and it was an exceptionally  tasty meal.

On Tuesday, I went to Trafford General for a Catheter change. It was particularly painful and gory. When I had the procedure done initially, I had no idea that I would have to have the tube yanked out bleeding, every 5 weeks. I may have felt differently about having it done. Just when all I wanted to do was curl in a ball and feel sorry for myself, I had to entertain visitors. For anyone else, I would have refused but my sister has flown halfway across the world and is going back to Australia on Saturday. It was lovely to see my nieces for the first time in nearly 2 years.

On Wednesday, we were struck down by another bout of staff sickness and yet again, Friday PA stepped into the breach. This time, he took me and my 2 year old companion to Chester Zoo, where we met up with the Aussies again. It was a fabulous day out and I thoroughly enjoyed myself but I am truly suffering for the exertion, today.

I have been eating well all week without needing a feed overnight. I have felt amazingly strong and I have had more energy than I can remember. I put it down to a tiny amount of weed taken last week. If I can have a week like this one every once in a while, I think it’s worth doing.

I have started a craze. Since renewing my friendship with D last week, which has meant the world to me, I have heard from 4 other people, who I had lost touch with. Although I paint myself as a voluntary recluse, I am enjoying my renewed friendships. For a while, when I thought I was about to die, I was overcome by false nobility. I lost contact with friends and convinced myself that it was a generous act to 'let them go'. I was wrong.  

Listening to Indigo Girls: Ghost 

http://www.youtube.com/watch?v=VfI4JcTeI6I

Remembering... Remembering being young and vibrant and vital and thanking you for validating that memory x

Hydro

Sharon (Session Supervisor) went through full range of motion exercises focusing on shoulders and quads. Rachael was noticeably more relaxed and loose-limbed afterwards.

Email exchange with Macmillan Nurse

Over a series of emails between Rachael and Claire (Macmillan Nurse), Claire enquired about suction machine and medication. Claire agreed to send letter detailing new arrangements for enteral administration of medication.

November 2011. In which my sister visits from Australia and I go camping.

01/11/2011. 4.41am

some passing glass sensation but weaker than previously waking me but can return to sleep fairly stiff joints

01/11/2011. 7.56pm

Catheter change was more painful than usual Sister and family visiting from Australia in the evening - tiring but wonderful

02/11/2011. 5.38am

Worn out can't sleep position pain passing glass sensation cold teeth chattering bit the side of my tongue

02/11/2011. 8.07pm

Another bizarre day carer off sick went to the zoo with p.a. and his son and met sister and family visiting from Australia.

03/11/2011. 1.12am

restless and uncomfortable bottom very sore finding it hard to sleep after staying awake waiting for daughter to be dropped home after a gig.

03/11/2011. 8.38pm

Extremely tired today. Also getting jittery about some financial concerns. Didn't eat as well as the previous few days.

04/11/2011. 3.17am

Positional discomfort sore bottom legs heavy too hot dehydrated feeling of impending panic can't sleep.

04/11/2011. 8.32pm

Superb hydrotherapy session with proper physiotherapist! Unbelievably relaxed and loose limbed. Can't stop smiling.

05/11/2011. 5.49am

Slept deeply and woke only once for moving. Feeling refreshed. Knees feel easier quads less tense.

05/11/2011. 5.09pm

Mmm humus and Emma's chillis then Tom's stew and Maggie's bread. I've nearly burned my face off but what a good do.

05/11/2011. 10.31pm

Wind in my face friends and a bonfire that couldn't be beat Surround sound pyrotechnics steaming bowls of stew apple pie and cherry brandy.

06/11/2011. 5.17am

Lovely deep sleep woke once for more blankets and once for moving Straight back to sleep Sore bottom feels like I sat on a Tonka truck.

06/11/2011. 8.37pm

Daughter quite unwell with sore throat headache and earache making her dizzy I'm ok.

07/11/2011. 5.19am

Woke a few times with sore skin under my bottom dehydrated night bag nearly empty but passing a fair bit (tsp) of blood.

07/11/2011. 7.57pm

Shattered. Daughter still ill. She slept all day. Tech support came to tweak my environmental controls.

08/11/2011. 6.42am

Someone robbed half the night! I woke shattered with an aching thigh as if someone kicked me.

08/11/2011. 12.58pm

Dribbling like Beethoven but mightily relieved that my daughter is in greatly improved health.

08/11/2011. 9.17pm

Daughter's parents' evening went well. My sister from Liverpool deputised for me She was formidable.

09/11/2011. 5.57am

Reasonable night slept well enough with a few wakes in position pain Legs and hips quite stiff.

09/11/2011. 6.48pm

quiet day at the computer. Bit of a choking episode at tea time All well again now but worn out.

10/10/2011. 5.04am

Can't stop grinding my teeth. Legs twitching like mad despite extra baclofen.

10/10/2011. 8.52pm

Where did the day go? Lovely carer doing bits and pieces with me Daughter was a thing possessed as she prepared to go to a gig in town.

11/11/2011. 6.41am

Good night until I woke with cramps twitching spasms and dehydration to find the eye gaze switched off and panic button out of reach

11//11/2011. 9.29pm

Shattered after a fun but freezing day in the garden with my p.a.

12/11/2011. 5.17am

some positional discomfort now really quite unpleasant but slept straight through, which is a rarity.

12/11/2011. 8.43pm

Slow day tired and sluggish Didn't do much but a good shower and bowel movement.

13/11/2011. 1.07am

First night back on feed - hideous stomach ache! Need to bend double but can't.

13/11/2011. 8.51am

Took feed off and after two hours of severe sharp pain the stomach ache subsided. Still feel dodgy.

13/11/2011. 5.17pm

visit from long lost friend really brightened my day. Lovely hour snacking with daughter over her revision

13/11/2011. 8.57pm

clucking like a junkie. Mis communication has led to a carer no show. on way now but late

14/11/2011. 5.44am

Muscles tense and twitching slept fitfully in great discomfort no feed no stomach ache is a bonus though

14/11/2011. 8.51pm

Fun day with carers time flew ate well no pain well looked after

15/11/2011. 6.35am

Slept from early evening in my chair. Well rested but a tad dehydrated.

15/11/2011. 5.51pm

Pampered and groomed for the weekly shop with carer. Grinding teeth still an issue.

16/11/2011. 3.57am

My sleep pattern is out of whack. Woke with position pain and found it hard to get back to sleep Slept early evening

16/11/2011. 5.49pm

ate well worn out after trip to the market. I was scared when my driving arm failed and I could not work the joystick

17/11/2011. 3.07am

strong shooting pain in my urethra

17/11/2011. 5.57am

Still can't sleep. Waves of pain every few seconds. Blood clots in catheter. Lessening but still unpleasant

17/11/2011. 10.34pm

Hideous stomach cramps and back ache continued all day with fatigue. Slight indication of menstrual show was a relief

18/11/2011. 4.39am

A fractured night with some discomfort but long periods of much needed sleep.

18/11/2011. 6.49pm

No hydrotherapy until Monday. It's inconvenient and I'm not keen on change.

19/11/2011. 4.54am

Woke up a couple of times aching and in need of a position change otherwise slept well

19/11/2011. 10.46pm

Wrapped up and braved the garden, whilst carer prepared it for winter. Take away tea with daughter 1 choke, several naps

20/11/2011. 5.04am

Shat myself. Took a while to get me changed and into bed. Sore, skin red and blistering.

20/11/2011. 6.35am

Unexpectedly fun day pottering around the house. Tired now but wonderfully well cared for. Minor choking incident at lunch.

20/11/2011. 9.01am

Sunday carer is off sick. Lovely cover carer is showering with care and my bottom feels  much improved.

21/11/2011. 6.40am

Quiet restful night. Woke 3 or 4 times for rearranging my position and moving my limbs but no problem getting back to sleep.

21/11/2011. 9.02pm

Hydrotherapy was wonderful and much needed. I saw an OT about a further ceiling track and made a delicious stew with my PA.

22/11/2011. 4.53am

Slept well. Woke feeling dehydrated and groggy with sore buttocks. Need the toilet.

22/11/2011. 11.23pm

Calm day conserving energy for the evening. Theatre was great fun despite BM midway through the second act!

23/11/2011. 6.13am

Slept through with 1 wake. Sore labia from sitting in wet BM for hours last night but worth it.

23/11/2011. 6.01pm

Made bread pudding with carer Tired but well fed quite twitchy in triceps, deltoids and adductor muscles

24/11/2011. 3.19am

awoken by severe sharp pain between buttocks as though I had been goatsee'ed, torn asunder. The bottom sheet had slipped.

24/11/2011. 7.47pm

Hectic day of visitors waxing pie competition and being the taxi of mum!

25/11/2011. 2.41am

Slept fitfully and could not find a comfortable position dehydrated and constipated.

25/11/2011. 7.23pm

Another busy day with medical visitors and preparing food/packing for camping trip.

26/11/2011. 5.00am

Fairly uneventful night one minor choke sorted by able carer.

26/11/2011. 11.47pm

This yurt is awesome! I'm camping with 2 carers and the partner and son of one of them.

27/11/2011. 3.34am

Howling gale outside has crept in through the top panel, the fire has gone out, my nose is frozen and I'm stiff. Thankfully I'm drunk.

27/11/2011. 5.21pm

shattered but well worth it. Superb care, improvisation and fun.

28/11/2011. 4.08am

Everything aches but I expected that. Carer watching for choking like a hawk. It's worse when I'm tired.

28/11/2011. 7.51pm

Surprised by wheelchair engineers this morning, hydrotherapy pm then several naps later time for an early night.

29/11/2011. 3.37am

feet freezing struggling for breath still so tired and slightly headachy carer concerned but it will pass.

29/11/2011. 7.02pm

Relaxed after hilarity. Tuesday carer sick but Sunday carer stepped in.

30/11/2011. 2.47am

Quite a scare when a power surge tripped the fuses. All my equipment off and beeping.

30/11/2011. 5.11pm

Another restful day. Grateful that strikes caused postponement of routine blood tests. Still achy, diarrhoea.

Email Received from Physiotherapist

A emailed to set appointment to show how to use the suction machine. Appointment set for 17/11/11 at 10:30am.

Catheter change at TG Hospital

Rachael attended a catheter change appointment. Stuart (urology nurse) struggled to remove catheter tube and Rachael found it extremely painful, the worst catheter change to date. The trouble seemed to be that the balloon, when deflated, catches and forms a ridge making it extremely difficult to remove.

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.

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.

Hydro

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.

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.

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

YELLOW: Tilt

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

Hydro

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.

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.

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.

08/10/2011.7.07am

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.

21/10/2011.8.23pm

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.