Monday, 19 December 2011

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

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


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

ALS Blogger Rachel 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 Snapshot of the InstantMe Survey Rachael Takes Daily at PatientsLikeMe (Click Through to See Her Latest Entries)
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.

 2 Share29


  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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Monday, 12 December 2011

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.


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.

Thursday, 8 December 2011

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.

Wednesday, 7 December 2011

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.

Tuesday, 6 December 2011

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.

Monday, 5 December 2011


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.

Thursday, 1 December 2011

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.