Thursday, 29 September 2011

Visit from Speech Therapist

Lynsey came in response to hearing of Rachael's choking episode. She read the medical notes relating what had happened. Lynsey then discussed the possible options to help Rachael thin her saliva. She explained about nebulisers, cough assisst machine, suction machine and medication to thin Rachael's saliva. She then discussed District Nurses as they usually distrubute the machines. Rachael asked if she could get a machine from her GP. Lynsey said a GP could do an assessment but stressed that the Distict Nurses issue out the Nebulisers/Cough Assist/Suction machines. Rachael asked if there was anyway she could get some mediation between herself and the District Nurses. Lynsey said she would look into it and said that a Practice Nurse/GP may be happy to do this. Lynsey then asked Rachael how she was managing to eat/drink Rachael said she sometimes struggles to swallow and take medication. Lynsey advsed to crush drugs and flush them through the rig. Rachael said she was worried about not getting the full dose that way, so Lynsey confirmed that she would get written confirmation from the doctor that taking drugs via a flush is ok. The discussion then returned to the benefits of using medication and machines to reduce saliva thickness.

Suction Machine: will remove sticky saliva from the top of throat
Cough Assist: will remove saliva and phlegm from the lungs
Nebulisers: actively thins saliva using water
Mucodyne: actively thins saliva using medication

Lynsey told Rachael to keep hydrated uing flushes as Rachael said she was down from 4 x 400ml drinks to 1 x 400ml a day. Lynsey said part of the reason Rachael's saliva was sticky was because she is taking less fluid via the mouth. Rachael said she was not taking any thickened fluids. Lynsey advised to try brushing Rachael's throat if saliva collects again. Rachael said the secretions are too low down for that to be of any use. Lynsey brought up training issues and said she would lok into what was on offer in way of staff training. Rachael then discussed her MyTobii. She mentioned it kept crashing and Lynsey said to speak to Smartbox about it.

Wednesday, 28 September 2011

Emails exchanged with Occupational Therapist

Emails were exchanged between Rachael and OT discussing whether the collar that the physiotherapist brought was helpful. Rachael said it was.

Tuesday, 27 September 2011

Call Received from Speech Therapist

Lynsey called with an update on previous conversation. She said she had spoken to Dr G about a couple of issues. Dr G had agreed to prescribe Mucodyne (saliva thickener) on Rachael's next prescription. She also said she would try and get liquid forms of all Rachael's drugs, and look into procurring a suction machine. Lynsey said she will give us a further update when she knows more.

Call made to Speech Therapist

Spoke to Lynsey about the best cause of action to take in the event of another choking episode. Lynsey advised that calling the ambulance is the only option to take if it happens again. Lynsey said she would speak to the MND Care Team and arrange a suction machine. Lynsey also said she would get more information on anything that may be helpful eg: reverse heimleich manouvere - pressure on solar plexus. An appointment was made for Lynsey to visit Rachael at home on 29/09/11 at 2pm. Lynsey said there was no first aid course that she was aware of that could help with staff traning issues.

Monday, 26 September 2011

Visit by Occupational Therapist

The OT came and took Rachael's approximate measurements (guessed height and weight).

Saturday, 24 September 2011

Choking Episode

Rachael experienced a choking episode after taking her evening drugs. It was exacerbated by bits of dissolved Baclofen in her throat. Rachael found she could not swallow her saliva and kept trying to cough, but was unable to do so. Rachael was choking for 10 minutes, so an ambulance was called. After 20 minutes, an ambulance had still not arrived so was cancelled. The man working was very scared and panicky as was unsure of what he should have done. He rang NHS Direct who called the ambulance.
On the Monday, the MND Specialist Nurse was called who advised me to speak to Rachael's Physiotherapist. She was not in so spoke to another physiotherapist, who said we should speak to Speech Therapist who could advise us of best cause of action to take if Rachael has another episode. She said she would get a message to Lynsey, to get her to call us.

Friday, 23 September 2011


Sharon went through full range of motion exercises, focussing especially on Rachael's index finger on her left hand, as it appeared to have become more 'claw-like'. Sharon asked a colleague from the hospital to look at it, who then made a splint to prevent further deterioration and discomfort, as the finger cannot be straightened.

Tuesday, 20 September 2011

Catheter change at TG Hospital

Rachael attended catheter change appointment a week early (5 weeks). Cuffing was still evident but greatly reduced. The open-ended catheter seemed to have improved the flow as it was less blocked. Another appointment was made for 6 weeks time.

Great North Run 2011

As a birthday gift (!) for the past 4 years, my brother has pushed me round the Great North Run. This year my chair had to incorporate a headrest, leg support and paddling. We still managed a time of 2.43.33 Sam is amazing and the day was awesome. The atmosphere on the run is always inspiring and this year as never before, I was delighted to see whole swathes of deep blue MNDA vests. I met a host of runners raising £££s and awareness of MND and averse as I am to the 'H' word, it gave me hope.
Thanks Sam and all the runners who gave me such a wonderful day

Wednesday, 14 September 2011

Clinic at H Hospital

Dr E had a student with him throughout the appointment. Rachael discussed the dry skin on her face and he said to continue using emollient cream. Rachael also discussed her respiration and the use of her Bi-Pap, stating everything was ok. Rachael did express concern that she sees a different doctor everytime she has an appointment at Wy Hospital. The last time, the doctor didn't seem to have read her notes as he went over old ground regarding blood gases and Rachael's need for the Bi-Pap. The doctor didn't understand or pay attention to anything Rachael was saying. Dr E expressed his apologies that Rachael had encountered that. Rachael and Dr E agreed that of there was anything important to note, she would write it down before any appointment - but noted that Rachael has no concerns at the moment. Dr E noticed a deterioration in Rachael's speech which is to be expected. Rachael commented that the eyegaze was still working well. She also showed Dr E her rig. Rose and dietician had a look and all agreed it was overdue for a replacement. Rachael discussed the option to converting to a different type of tube, with a balloon. Dr E and Rachael agreed that the best option is the low maintenence tube she has at the moment. Dr E said he would book Rachael in for a day appointment for replacement until tube can be refitted. Rachael expressed her concern about needing a shorter replacement period due to blocking and clotting, but told Dr E that TG Hospital were aware and dealing with it and any issues that arose.
Rachael went to see Julia (Occupational Therapist) and Sarah (Physiotherapist) who discussed Rachael's curling fingers and toes. They both felt that Rachael needed a further physio review and said they would pass referral to community team. They also mentioned positional pain and pressure in Rachael's sciatic nerve. Julia suggested that Rachael needs a ceiling track hoist in the living room and a bespoke recliner chair in which to transfer during the day as the wheelchair is for mobility, rather than for rest/long periods of time. Julia agreed to make that referral to the community Occupational Therapist.

Thursday, 1 September 2011

September 2011. In which I take part in The Great North Run and have my birthday.

01/09/2011. 3.09am
Position pain and cramps. Itching everywhere. Really need to move knee.
01/09/2011. 6.19pm
routine hospital appointment re bipap then uniform shopping with daughter for next term. Shattered.
02/09/2011. 2.42am
Woken by passing glass sensation labia sore shoulders and neck ache legs heavy heels and buttocks sore and stretched.
02/09/2011. 1.54pm
After blood clots in urine this morning everything seems to have settled dashed out for emergency homework supplies now need nap.
03/09/2011. 2.09am
So exhausted all afternoon slept all evening rig has retracted right to the rubber, pulling in my stomach, painful.
03/09/2011. 6.57pm
a fairly placid day energy failed quite early much napping
04/09/2011. 3.04am
Disturbed night slept fitfully too uncomfortable and hot.
04/09/2012. 8.02pm
swapped shift w/day carer went for a stroll, watched bowls very tired but less exhausted frequent position changes required.
05/09/2011. 5.57am
Only woke a couple of times with pressure pain and sticky mucus which can be frightening otherwise restful sleep
05/09/2011. 8.43pm
lovely day. Took Basil cat to the vet. He is well. I was caught in the rain. Ate a good tea and entertained guests in the evening.
06/09/2011. 4.50am
Needed to move postural pain several times. Runny nose all in my mouth BM squelching in my bed and sore.
06/09/2011. 7.01pm
Left hip aching and quite a bit of excess mucus in my mouth nostrils blocked. Wednesday carer phoned sick for tomorrow. Worried.
07/09/2011. 3.06am
Postural pain ankles and thighs heels and hips aching. Can't quite shift mucus. Big L toe hurts. Must sleep.
07/09/2011. 6.49pm
A day at the museum with my 2yr old pal and his dad. Everything worked and felt relaxed. Even my present tiredness is pain free.
08/09/2011. 5.43am
Slept through bar once very refreshed but with a sore and aching bottom. Back feels uncomfortable too.
08/09/2011. 8.41pm
Good day of pampering and laughter with carer. Big L toe still sore. Need moving a lot.
09/09/2011. 5.33am
Painful passing glass sensation with slight urine leak onto pad. Uncomfortable position, legs ache and ankle sore.
09/09/2011. 7.56pm
Lovely float at hydrotherapy but not much exercise with new physio.
10/09/2011. 5.18am
ankle and big L toe sore. Sitting on a crease. Bottom stretched uncomfortable. Limbs heavy pressing into the bed. L pointer finger cramped.
10/09/2011. 5.59pm
Very tired so quiet day. Decided not to brave the weather. Toe still sore to touch.
11/09/2011. 3.32am
Muggy night can't sleep. Can't get comfy.
11/09/2011 6.42pm
Quiet day windy and raining so I gave the Rush Bearing Festival a miss. Blister on bottom sore.
12/09/2011. 4.59am
Bottom sore feels stretched legs heavy neck off balance.
12/09/2011. 8.23pm
Well, clean, fed and covered in Sudocrem! Lovely day baking with carer.
13/09/2011. 2.40am
Passing glass sensation stronger than ever. Hurts.
13/09/2011. 5.17pm
incredibly tired but enjoyed a long shower wrapped up and watched the rain lash down sorted paperwork.
14/09/2011. 2.53am
Passing glass sensation strong, suspect there will be blood clots in catheter ankle and bottom hurt back feels like something is pressing in.
14/09/2011. 7.53pm
Clinic day at the hospital. Consultant made me smile even whilst booking my rig change. Very tired now.
15/09/2011. 4.16am
Passing glass sensation again. Back ache. Blocked and runny nose. Hand sore and cramped.
15/09/2011. 8.54pm
busy day of admin. Clean fed and rehydrated some positional discomfort easily fixed slight passing glass sensation.
16/09/2011. 4.36am
Inconsolably itchy. Want to rip my face, gouge my eyes and tear at my hair. Hot.
16/09/2011. 3.49pm
took an extra baclofen to counter this morning's violent DTs. Felt great all day.
17/09/2011. 6.43am
Slept from 4.15pm. yesterday don't recall carer shift ending, going to bed rien! No feed on overnight badly dehydrated.
17/09/2011. 1.58pm
got in some training for The Great North Run-lying in a chair being pushed is harder than you'd think!
18/09/2011. 4.37am
Up and dressed and ready to set off to Newcastle to take part in The Great North Run.
18/09/2011. 9.24pm
Could be v good or v bad too tired and achy to tell. You should see the brother who pushed me round.
19/09/2011. 6.44am
Took extra drugs yesterday. They caught up! Tired, aching and hungover but the race was awesome!
19/09/2011. 7.14pm
woozy and achy all day-tired. Dentist appointment was uneventful but the journey and communication was tiring.
20/09/2011. 3.38am
Dribbling saliva down my neck forming pools. General discomfort and knotted stomach. Waves of panic. Overheating.
20/09/2011. 5.26pm
Catheter change hurt back ache and groin sore. Feel absolutely drained.
21/09/2011. 5.29am
Sore from catheter change position uncomfortable excessive drooling.
21/09/2011. 7.57pm
Quite subdued day. Some discomfort and not a lot of energy. Car failed its MOT!
22/09/2011. 5.45am
Slept reasonably. Usual discomfort and painful bits. All seem worse when lying awake and immobile for hours on end.
22/09/2011. 9.57pm
The loveliest birthday. Mum and Dad came to tea and my daughter spoiled me rotten. Asleep by 7pm!
23/09/2011. 4.34am
Position uncomfortable need to move my bottom and bend knees. Snotty nose dribbling down my face.
23/09/2011. 9.09am
feeling quite stiff after a fairly full-on week looking forward to hydrotherapy.
23/09/2011. 7.58pm
Hydrotherapy day. Concentrated on knee bends and shoulder stretches. Walked across the pool with assistance.
24/09/2011. 3.23am
can't sleep. 2nd and 3rd fingers on each hand sticking together, 3rd overlapping 2nd.
24/09/2011. 5.56pm
fun day lovely warm shower since electrician fixed it. Still feeling loose and relaxed after hydrotherapy.
24/09/2011. 10.41pm
Panic over now but quite a scare. Took evening tablets orally baclofen or riluzole stuck in throat dissolving throat numb started choking.
25/09/2011. 5.33am
Haven't slept well, scared of choking
25/09/2011. 10.10pm
quiet day still quite shaky but calmer spent a lot of time napping
26/09/2011. 2.56am
Woke sweating dehydrated neck sore and ankle has fallen over. Hip feels displaced.
26/09/2011. 7.12pm
Friend came to tea. Spent pm with carer preparing experimental stew Courtesy car arrived. OT came to measure me for recliner chair.
27/09/2011. 5.28am
Slept well but woke with painfully stiff left knee.
27/09/2011. 5.14pm
Mundane but necessary jobs day. Gas engineer for  landlord safety check and bladder wash were the highlights.
28/09/2011. 2.29am
Stomach ache I just want to curl up into a ball.
28/09/2011. 7.05pm
Lo and behold that stomach ache has become full on cramps and menstrual period with a touch of sniffly cold thrown in to boot.
29/09/2011. 1.58am
Skin on my bottom stretched and breaking Stomach cramps so bad that I cried.
29/09/2011. 6.51pm
Absolutely shattering day with lovely speech therapist hopefully constructive.
30/09/2011. 3.25am
Sneezing snot running down my face feeling uncomfortable bottom stretched and sore.
30/09/2011. 7.19pm
Still bleeding so absolutely shattered but an otherwise great day in the surprise September sunshine.

Respiratory Appointment at Wy Hospital

Blood gas test results were normal. Bipap serviced by nurse. Dr B's registrar checked Rachael's cough response and suggested Rachael trial a cough assist machine. The registrar said he would set-up another appointment and get Rachael involved in the next 2 months.