Friday, 31 December 2010

Bad

Everything aches I can't get a comfy position and my stomach is so painful I have tears. Daughter is out. I'm lonely.

Bad

Stabbing genital pain, still heavily menstruating, soiled, ankle back shoulder pain, headache, itching, dehydrated.

Thursday, 30 December 2010

Good

Glad to have non-dx concerns to baffle me parenting, politics and periods.

Neutral

Woken by the worst/heaviest menstrual period of all time. Surprisingly none of my usual aches and pains. Bonus.

Wednesday, 29 December 2010

Good

Having a lazy morning playing with blog templates no pain.

Parking Wars

At midday on 28 December 2010 some friends and family called to visit in 3 cars. 3 pensioners, 3 adults, 3 ½ toddlers. (My sister is 7 months pregnant.) I was at home with my carer, my daughter and her school friend. I have been quite unwell over Christmas. 
I was unable to spend Christmas with my family and it was important to us all to celebrate together somehow. My brother and his family were visiting briefly from Scotland and my parents have been quite nervous on the ice. This was the one day we could coordinate for 3 hours and I was really looking forward to it.
12.40 My car took my daughter’s friend home, whilst we got my parents inside. I say we, I actually watched ineffectually, whilst everyone else made busy. The street has been packed with cars all week, it’s Christmas! There have been 2 strange cars outside my house and next door for days, since before the snow, again it’s Christmas! On its return we parked my mobility vehicle further down the road, where there was room, near no 41 in the lay-by, displaying my timed blue badge to indicate that this was temporary. I know we had a lot of cars and didn’t wish to unduly inconvenience anyone.
 !3.00 I noticed, through my living room window, that a woman was marching, in a comical fashion, through the sleet and snow. It’s a quiet street and only a handful of people had braved the elements all day. I was surprised when the woman rang my doorbell as I didn’t recognise her at all.
My carer answered the door. The woman was rude and abrupt, demanding that we move the car and never park near her house again. The woman then left. I was put out by her manner and instructed my carer that I would not respond immediately as it was lunchtime when I require various procedures including hoisting, toileting and maintenance of my gastronomy tube all of which whilst hosting a family get together.
13.15 The woman returned muttering and making irate gestures as she walked. This time when she rang my doorbell I moved my chair to the door. She was extremely rude and threatened to smash my car if I did not move it. I said I’m sorry but no. She left murmuring unintelligible threats.
13.20 A large thickset man came to my door. With some trepidation I went to see who he was. He again asked if the car could be moved. He was extremely polite and I agreed. As he left he became insulting saying that I had better move it. The threat was implied.
13.30 My carer went to move my car. The woman came out of number 41 and started to shout at her insulting her driving, threatening to turn over my car, calling my carer a blonde trollop. On hearing the altercation my Brother in Law went out. He stood some way back so as not to further antagonise. The woman was behaving in an intimidating way towards my carer who is a young girl in her early twenties who certainly didn’t sign up for this kind of abuse. The woman approached the driver’s window. My pregnant sister attempted to calm the woman down and the woman turned aggressively towards her. My Brother in Law advised the woman to go back inside before her violence was reciprocated. She threatened to see to his car and called him a ginger freak. She was pointing at a car that was nothing to do with my party.
My carer moved my car but to date number 41 have not moved theirs from where it was behind mine. I am confused as to why the urgency if they had managed anyway. Having parked my mobility vehicle at the other end of the street near the church we all returned to number 47 and resumed our festivities. When everyone had gone I remained anxious for my security. My mobility vehicle is a lifeline and I am in no fit state to defend myself against a clearly explosive but able bodied woman.  

                                                          

Bad

raging headache too hot dehydrated back ache foot stuck on one side ankle hurts

Tuesday, 28 December 2010

Good

Visitors for three hours. Amazingly tired but amazingly happy. Took Voltarol at 5 for backache - works.

Bad

Woke twice postural pain and soiled myself. Catheter stoma really painful. Blood clot in urine.

Monday, 27 December 2010

Neutral

Fairly stuffy nose but otherwise fine.

Neutral

Fairly restful night. Woke once with cramps. Friend moved my legs and I went back to sleep.

Saturday, 25 December 2010

Good

Drunk and happy.

Neutral

Full of a cold but the added bonus of excited daughter at Xmas was that she moved my aching legs.

Friday, 24 December 2010

Bad

Really wanted to spend Xmas eve with my daughter. Slept nearly all day. Can't keep my eyes open. Bed.

Love Note to Mytobii

Dear eye gaze system,  thank you from the bottom of my heart, thank you for changing my life.


Before you came along, I felt empty inside. You filled a cavernous and lonely void in my life and I can never thank you enough for being my voice and my contact with the world, unconditionally there for me. (Apart from the broadband contract condition and conditions of internet use...  actually there are quite a few!)


In his essay, 'Night' Tony Judt writes of how MND affected him. I am at the same stage. 
By my present stage of decline, I am thus effectively quadriplegic. With extraordinary effort I can move my right hand a little and can adduct my left arm some six inches across my chest. My legs, although they will lock when upright long enough to allow a nurse to transfer me from one chair to another, cannot bear my weight and only one of them has any autonomous movement left in it. Thus when legs or arms are set in a given position, there they remain until someone moves them for me. The same is true of my torso, with the result that backache from inertia and pressure is a chronic irritation. Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).

He goes on to say that in this 'cockroach-like existence,' night ' is, like the disease itself, incommunicable.

My Mytobii,  you make everything communicable. 
C10, I want to spend the rest of my life with you. I want to wake up to you every morning. I want to hear you whirring while you're downloading films. You are my comfort during those interminable nights. When I am trapped inside my own head, you are my outlet. The type of 'locked-in syndrome' associated with quadriplegia is truly horrific to imagine. Julia Tavalaro writes of her experience of 'locked-in syndrome' in the book, 'Look Up For Yes' 

Here I lie in my bed
Just as if I were dead 
Hoping wishing Hallelujah praying
That my last breath will be my next 

You offer me a pass-key to escape and allow me to dream of many breaths to come, assisted or not. 
Thank you. 

You make my life complete . You make me feel like a valid human being with much to offer and a means of expression. I went shopping with you and picked out a beautiful gift for my daughter, I can't wait to see her face on Christmas morning. With your help, I thanked the postwoman who brought it. 

It is said that the way we communicate with others and with ourselves ultimately determines the quality of our lives. Thank you for enhancing the quality of my life. 


Sometimes I can laugh so hard I cry; you let me share the joke with friends.

Bad

Trying out new splints. Sudden agony. Back pain pales into insignificance.

Thursday, 23 December 2010

Good

Still snuffling but feeling quite jolly. Energy levels up.

Neutral

Oxymetry test all night. Ironically the best night's sleep I've had in ages.

Wednesday, 22 December 2010

Neutral

Respiratory clinic all day. Shattered.

Respiratory Appointment at Wy Hospital

Blood gas test normal. Dr C read Rachael's notes and said that he understood her effort in breathing. He said that although blood gas tests are consistently normal, the oximetry test indicated fluctuations. He ordered an overnight oximetry test. Sarah setup the machine and gave it to Rachael to run the test overnight. Depending on the results of the test, Dr C will call Rachael in to provide Bipap. Another appointment to be arranged for 2 months time.

Bad

Up for hours. Can't move. Everything hurts.

Tuesday, 21 December 2010

Monday, 20 December 2010

Good

Clean, fed, entertained and exercised.

Neutral

Well rested but a bit concerned I might be coming down with a cold.

Good

Still tired. Still glowing from last night.

Sunday, 19 December 2010

Bad

Slept through til 1pm. Shivering. Headache. Struggle to breathe. Blood in urine. Very tired.

Bad

Headache, choking. Dehydrated. Leg and ankle cramps. Runny nose. Disorientated.

Saturday, 18 December 2010

Bad

Fatigued. Nose running, choking. Finding it hard to concentrate.

Bad

Woken up with foot cramps and back and neck pain. Dehydrated. Had soiled myself.

Friday, 17 December 2010

Good

Had a brilliant hydro session. Feeling really relaxed.

Hydro

Katie went through full range of motion exercises with Rachael, focusing on all joints which were additionally stiff. 

Bad

Foot cramp. Ankle painful. Dehydrated. Dull headache.

Thursday, 16 December 2010

Good

Slightly breathless but catheter working well.

Bad

Shattered and very shaky, choking in the night scared me.

Email exchanged with Occupational Therapist

Email was sent querying when situation with front door would be resolved.


Debbie replied saying she will continue to chase up situation with front door.

Visit from Physiotherapist

Kathryn brought "Leder Boots"/ foot splints. She showed Rachael how to use them and when the best time to use them would be.

Wednesday, 15 December 2010

Good

Eating yogurt, clean, hydrated, reminiscing listening to the velvet underground.

Bad

Cystitis like pain, gunk from both stoma. Itchy groin, can't move, cramp, heels hurt.

Tuesday, 14 December 2010

Good

Sleepy after attending urology clinic for 1st catheter reinsertion, old one blocked.  Draining well now.

Catheter Change at TG Hospital

Catheter tube was changed to a size 16 silicone tube. An outpatient appointment was made for the next catheter change on 22/02/11 at 1pm.

Neutral

Have defecated but at least I'm no longer constipated.

Monday, 13 December 2010

Good

Went out, socialised. Fairly tired but not fatigued.

Bad

Woken up with cramps and positional pains. Head thumping. Generally not a good time.

Sunday, 12 December 2010

Neutral

Totally shattered. Neck pain but my daughter and I are decorating the tree so I'm happy.

Not Nerys Hughes

Wednesday 8th December 2010
My urine was slow and I had pain in my bladder.

Thursday 9th December 2010
3.15 am I awoke in extreme discomfort.
6.20 am My carer got me out of bed. The night bag had very little in it but what was there, was dark orange and pungent.
8.30am My leg bag was empty. I urinated from my urethra. (In the hoist, all over my carer. Sorry E!)
11.00 am My carer changed my leg bag and noted shards of a crystallized substance on the catheter.

Friday 10th December 2010
The catheter was still blocked. I emailed the Urologist who expedited my catheter change to next week and recommended that the District Nurse effect a bladder wash in the meantime.
I was really impressed with the Urologist's response. Email ftw! 
My carer made an appointment for the District Nurse to call the next day, for an am appointment.

Saturday 11th December 2010
The District nurse arrived at 12.23pm
She introduced herself as K? (I didn’t quite get her name.)
She came in and took her notes out. She read aloud that I have a peg feed!  I pointed out that it is a rig not a peg. You will recall the trouble that I have previously had about this issue. (Rig Problem
She seemed to ignore me so my carer interjected, repeating what I had said.
My voice is weak and muffled at the best of times, so it is perfectly possible that she didn’t understand me but my carer was clear. Even if it is difficult, I would rather people speak to me , not directly to somebody else about me. I prefer to communicate through my eye gaze computer but with a little patience my speech is intelligible, it is just quite tiring for me. I could not get the district nurse to pause for long enough to direct her to my eye gaze.
K? maintained that I would have been referred to her, to have my balloon water changed weekly, if it was a rig. She told me that my peg only needs changing every month. I repeatedly explained that I have no balloon or peg and attempted to explain the pig tail but she ignored me and spoke over my already weak and desperate voice. She insisted that her eight years experience and three patients with rigs proved that I had a peg. Unable to follow this bizarre line of discussion and increasingly disregarded by the District Nurse, I told her that if she couldn’t follow a fairly simple statement of fact I would not allow her to perform a procedure and asked her to leave.
She evaded my request and continued to tell me that it was a peg and not a rig. I urged her to leave several time, at least ten, becoming progressively more distressed and anxious.
When she finally agreed to leave instead of going she began to make notes. I asked her not to and that I wanted her to leave my house now. She demanded the name and details of my carer. I told her it was none of her business and insisted that she should go. At this point I felt quite panicky. She prevaricated and stood her ground. I moved around the room, trying to catch her eye but she was looking at my carer asking about my bladder. I had to move away as my chest tightened and I began to feel light headed. My speech had become a thin scream as I attempted to shout “go, get out of my house”.
In a surreal moment the District Nurse said “I have to go now. It’s been lovely to meet you”. “No it hasn’t” I growled. She left at around 12.35pm protesting that she “really cares”. (Not enough to actually listen to me though.)

Sunday 12th December 2010
10.30am The same District Nurse turned up at my door. I told her to go away. 

Listening to Mike Harding – Napoleon's Retreat From Wigan
Off to watch Merlin! 

Neutral

calm after a truly awful day, yesterday.

Saturday, 11 December 2010

Bad

dehydrated, shattered. Pretty well slept since midday, ache, dreading the hoist. Everything hurts.

Bad

Ridiculously hot, stomach cramps, back pain, foot hurts and my dongle fell out before the end of the girl with the dragon tattoo.

Friday, 10 December 2010

Good

meds taken, washed, fed, joked with daughter. Speedy response from catheter team, booked 2 gigs, plotted the revolution on line!

Bad

Pretty much slept all day. Raging headache. Sweats. Catheter blocked. Pain at night. Urine painful and concentrate. Back ache.

Email exchanged with Dr Gu

Rachael sent an email to Dr Gu saying her catheter was completely blocked and requested an appointment to amend.
Dr Gu responded advising Rachael to get the District Nurses to try a "wash-out" and will arrange catheter change with OPD.
Dr Gu emailed back later on saying a catheter change appointment had been set for 14/12/10.

Take a deep breath!

Tuesday 9th November 2010. I was admitted to Hospital for a Supra-Pubic Catheter insertion. The anaesthetist was amazing. Even my inappropriate giggling (emotional lability) as he injected my spine, didn't phase him. I haven't been called bach for a good many years, it was comforting. Eventually I was given midazolam and sedated. The anaesthetist explained the added risk, inherent in sedation, for patients with MND. I had every confidence in him.
Both before and after the procedure, t
he Respiratory Team under Dr. B put me on a Non Invasive Ventilation Machine ( NIV ). This afforded me enormous relief.
Ordinarily I struggle with extreme tiredness and headaches. It takes such an effort to breathe in and out that I am exhausted and fatigued before I even attempt to do anything else. I do not feel the benefit of a night’s sleep and wake already feeling shattered. When I am tired I have a weak gag reflex, causing me to choke frequently. I also find it difficult to speak or use what little mobility I have left, including control of my power wheelchair or Eye-Gaze computer. Breathing is effortsome and tiring. Often in order to catch a breath I need to jerk my head backwards. As well as being dangerous, this places strain on my neck muscles. I already have a neck brace to assist in holding my head up and need to avoid unnecessary trauma.
When I used the NIV I did not have to make the effort to breathe. I was able to relax and woke feeling refreshed and strong, in a way that I have not felt for a very long time. This effect lasted for a good few hours after a relatively short session of less than an hour.
The only other time I feel anything like this effect is being driven in the car with the windows down. This effect however only lasts as long as the car journey and is a poor comparison.
Despite the results of my Blood Gas Tests being consistently within acceptable parameters, I felt such benefit from the NIV that I would like the opportunity to use one at home. I am confident that having access to an NIV would greatly relieve a number of my symptoms. Used regularly, perhaps overnight, I should wake feeling refreshed and energized without the sluggishness and headaches that I currently experience. With an NIV at home I would also be able to alleviate symptoms when my breathing and speech becomes laboured and difficult.

Thursday, 9 December 2010

Neutral

up and cleaned just a back ache now. Looking forward to a shower

Very Bad

Catheter stoma really painful feels like cystitis. Back ache, anxiety, breathing is effortsome.

Wednesday, 8 December 2010

Bad

head pounding, chest tight, back aches, foot hurts

Bad

head pounding, chest tight, back aches, foot hurts.

Tuesday, 7 December 2010

Good

despite a fairly sleepless night, morning headache, carer issues, back from MNDA meeting feeling cheered, if breathless. 

MNDA Support Group Meeting

General discussion of MNDA. Dierdre mentioned after hearing about Rachael's effort to breathe and how Bipap was helpful whilst in hospital, but was unsuitable for home ventilation due to "normal" blood gases, that her husband Robert encountered the same problem. Dierdre said she took Robert to his GP who referred him to Wy Hospital for further tests into his fatigue and difficulty breathing. Robert was then granted Bipap overnight.

Monday, 6 December 2010

Orthotics Appointment at B Hospital

Rachael asked for staff to be shown how to put her shoes on for maximum ankle support - shown. Rachael was also told that foot splints would be ordered for her to assist with any ankle pain.

Bad

Lower back pain, foot drop ache, disturbed night, coughing, gagging.

Friday, 3 December 2010

Good

Another terrible night but hydrotherapy has sorted me right out! Relaxed in places I had forgotten hurt.

Hydro

Rachael went through full range of motion exercises, focusing on Rachael's knees, which Katie said were very stiff.

Thursday, 2 December 2010

Good

snow day and my daughter is off school, my catheter stoma has stopped weeping and my headache has passed

Gynaecology Appointment at R Hospital

Dr A asked how frequently Rachael was bleeding and how heavily. He asked as to her previous treatment. Dr A recommended Norethisterone for 21 days then a break of 5 days. He also advised of the next stages and possible procedures if Norethisterone was not effective.

Wednesday, 1 December 2010

Visit from Physiotherapist

Kathryn came with an assistant physiotherapist to train staff on how to manipulate Rachael's muscles and joints when she is in pain. Demonstration and practice occurred. Kathryn said she would get us a copy of a booklet detailing all movements shown.

Monday, 29 November 2010

Email exchange with MND Specialist Nurse

Email was received asking Rachael to elaborate on certain issues and to confirm an appointment had been made to discuss additional care. Rachael responded by detailing further her issues and her concern that she needs additional care.

Monday, 22 November 2010

Visit from Physiotherapist

Rachael discussed where she was aching/hurting. A meeting was set-up for staff training in the manipulation of Rachael's muscles and joints. Kathryn also gave Rachael a firm back massage.

Saturday, 20 November 2010

Email sent to MND Specialist Nurse and Speech Therapist

Email was sent detailing Rachael's current medication, details of all medical and assistive staff, a conclusive list on how each is helping or dealing with specific tasks, and how Rachael is dealing with individual problems.

Thursday, 18 November 2010

Visit from District Nurse

Janice attended for a catheter change check-up. She asked if the catheter site was sore, but Rachael said it was not overly painful. Rachael was then asked if the site was healing, which she confirmed. No physical examination was conducted.

Tuesday, 16 November 2010

Neurological Appointment at H Hospital

Dr R took brief notes on Rachael's condition since they had last spoken in 2006. Rachael took a mental agility test and after an evaluation, Dr R said Rachael was unlikely to have dementia associated with MND. She suspected that memory loss is due to Rachael being unwell. Dr R said she could not take the matter any further this time.

Wednesday, 10 November 2010

Suprapubic Catheter Insertion

The operation was eventually performed under sedation within the care of the respiratory team. Rachael's home medication was taken to the pharmacy under strict guidelines that these must be returned immediately as Rachael would need them imminently. After the medication was not returned, Rachael visited the pharmacy where she was informed that the medication had been thrown away, nobody could say who had disposed of them. After a lengthy discussion, Rachael was sent home without her needed dose of Pregabalin, Baclofen and Riluzole.

Tuesday, 9 November 2010

Admitted to Wy Hospital

Blood gases taken, found to be normal. Rachael tried Bipap which made her feel less exhausted. The nurses agreed to look into possibility of use at home. Informed nurses of Rachael's needs overnight.

Friday, 5 November 2010

Email exchange with Dietician

"Just a quick update. I'm going into Wy Hospital Lung Clinic for a week, from next Monday 08/11/10. On Wednesday 10/11/10, I will have a Suprapubic Catheter insertion under spinal anaesthetic within the respiratory theatre and return to the respiratory ward for 3 days of monitoring and tests." - Rachael


"Thanks for letting me know. Hope all goes well." - Claire

Friday, 29 October 2010

Hydro

Rachael went through full range of motion exercises, particularly focusing on both knees, of which, Katie said were very stiff. Whilst standing in the pool, attempting assisted hip exercise, Rachael's rig tube was pulled and afterwards, whilst changing, Rachael noticed some bleeding. We cleaned the stem site and monitored it overnight. There were a few slight bleeds and Rachael felt tender inside the stoma.

Email conversation with MND Specialist Nurse

"How have you been on the reduced dose of Pregabalin? Also, you have noted some other issues/anxieties but you do not go into detail. Is there anything I can do to help? Can you elaborate? 'Anxiety: enduring power of attorney, Care Plan, Christmas, Ex, House, Lonliness.' You mentioned looking at the additional care when I spoke to you briefly in the clinic, has this been arranged?" 


"It's early days for the reduced dose of Pregabalin, I have started taking 150mg (75mg x 2/day) but after last Friday's bombshell, see additional care, I'm finding it hard to assess the damage. 
PoA hasn't been granted yet, which makes all things difficult. I'm not convinced that I have any hope of improvement. My appointees are very busy and largely unavailable for months on end. 
I am struggling to make Christmas tolerable, let alone, fun! Do I have the strength? 
My ex and his partner still live in our house. We are married. When I die, it will be his. 
Loneliness, or more properly, bereavement. A close friend died. He left things a mess, with unanswered questions. I wasn't ready, when I was first diagnosed and people offered to help with these things. I'm ready now but the people have now gone! ADDITIONAL ARE: I am in receipt of continuing health care funding administrated by Social Services. I was last assessed for care over a year ago and that assessment merely adopted the previous year's recommendations by Social Services. My PCT says I have the maximum provision. I get 10 hours a day with 5 of them for 2 carers and the rest 1 person working alone. (15 hours paid within 10 hours of care each day). I have no partner or family involvement. I have practically no movement to assist myself or adjust my position, my speech is difficult and mainly unintelligible. I communicate via eyegaze and cannot use the phone. I constantly battle pressure sores and postural pain and have a feeding tube. 
On the upside, my breathing is still about 50% and I am not vented. I wake through the night, often soiling myself and wait to be hoisted by the morning shift. I am sure I know of people with sleep-over staff. I am not asking for a full staff team 24/7 but I do need a proper assessment and more care hours, from my staff, at home. 
On Friday, the district nurse said that if I need more help, it will be provided in a residential setting by moving me into a care home. My poor daughter! I am already in agony at night unless someone moves me and its a reasonable certainity that it will get worse. My 14 year old can't be responsible if I am choking on saliva. I reckon on being around for the next 2 or 3 years, or so. I just want to do that at home. I can still be a mum. It's more cerebral than practical stuff but she gives me a hug, I dribble, she tells me about school and asks some devastatingly insightful question, I dribble and attempt to answer, she hugs me and skips off to Skype her boyfriend for 4 hours. Normal stuff! They can't split us up! 
Any help would be great."

Thursday, 28 October 2010

Email received from Physiotherapist

"Angela and me are looking at arranging a convenient time to go through your limb exercise programme with your team. We would need a time that all your team that would be performing the programme with you could be there/main staff. We work Monday to Friday - 8.30am to 4.30pm." - Katherine


"I have passed your email onto my PA. Look forward to seeing you soon." - Rachael

Tuesday, 26 October 2010

Visit from Dietician

Discussed overnight feed alarm and alternate methods of feeding. The bolus method was deemed inappropriate posing more problems than it solved. It was noted that the overnight feed was not the only thing to change in the last 2 years as Rachael's condition has declined. Discussed postural pain/pressure sores. Claire was unable to help but did say extra protein could make a difference. Discussed choking occurances and Rachael said choking can happen at all times and increasingly. The amount of feed Rachael was taken deemed fine and incontinence overnight was also discussed. Advised of current weight and said will be re-weighed again by Dr E on 19/01/11. Concluded no issues with feed. Discussed bowel and bladder movements. Claire advised to continue taking lots of fluids. Concurred that balancing incontinence and constipation is difficult and agreed to err on the side of incontinence.

Saturday, 23 October 2010

Friday, 22 October 2010

Letter to D (Continuing Health Care Funding)

Continuing Health Care Funding


D, I don't even know if you still work here! I shall crack on as if you do. 

They want to take my daughter and put me in a home... 

Do you know anything about continuing health care funding? 
My PCT say I have the maximum provision. I get 10 hours a day with 5 of them for 2 carers and the rest 1 person working alone. 
I have practically no movement left and communicate via eyegaze. I constantly battle pressure sores and postural pain and have a feeding tube. On the upside my breathing is still about 50%. I wake throughout the night, often soiling myself and wait to be hoisted by the morning shift. 
I am sure I know of people with sleep over staff. 
District Nurses say that if I need more help, it will be provided in a residential setting by moving me into a care home. 
My poor daughter! 
I am in bits. I am so scared. 
I am 41, I have had MND for 5yrs and it has spiralled of late. My care package has not been reassessed for over a year. This disease will continue to get worse and I am already in agony at night unless somebody moves my position. My 14yr old can't be responsible if I am choking on saliva. 
Sorry to rant. 
Any ideas? 
How do other mothers cope, in my position? Give up their children? 
I tried the MND Association, who were sympathetic but no practical help. Plenty of end of life advice but I'm not there yet and I reckon on being around for the next two or three years, or so. I just want to do that at home. I can still be a mum. It's more cerebral than practical stuff but she gives me a hug, I dribble, she tells me about school and asks some devastatingly insightful question, I attempt to answer and dribble, she hugs me and skips off to skype her boyfriend for four hours. Normal stuff! They can't split us up! 
It's the struggle with the pct that I don't think I have strength for. 
I have no partner or family involvement. My daughter is welcome at school friends houses when I'm in hospital but I'm not ready to sign off on either of us. If and when I die and over my dead body, my sister will look after my daughter . It is not yet. 
They threw the gem in on a Friday as well.
_________________

I didn't mean to get in touch with an ask but where do I start?
Hope to speak in better circumstances soon

love n all


Me

Thursday, 21 October 2010

Letter received from Dr E

Letter filed: Dr E sent notes and recommendations from clinic attended on 20/10/10. . Copy of consultant notes sent to GP.

Email sent to Dietician

"Unfortunately, in the time it took to read your email, I had booked another appointment with the district nurse. You would be more than welcome to turn up whilst we are talking. Tuesday would be preferable but I'm happy for you to come when convenient to you." - Rachael

Wednesday, 20 October 2010

Email received from Speech Therapist

"Thanks for copying me in on the email - it's good to have an overview of how things are going. Great news about the physio - I think you've been trying to get that started since I met you. I'm happy to come see you whenever - very keen in fact to come see the my tobii in action although I can tell by the details of the email and from Mandy's handover that it seems to be working well for you. It does seem like you have a lot on at the moment with appointments to sort your catheter so not sure if you want me to visit soonish or in a few weeks. let me know which you would prefer. I work Tues, Wed, Thurs so if you gave me an idea of time and day that suits you best, I can organise a visit." - Lynsey

Clinic at H Hospital

Dr E stated he thought memory loss is due to fatigue, not failing cognitive processes in relation to MND. He referred Rachael to Dr R, a neurological consultant who specialises in memory loss relating to MND. Dr E also advised to reduce Pregabalin intake and prescribed different strengths of the drug to make reduction gradual. He said to aim for 75mg in the morning and 75mg in the evening. Dr E also said if Rachael has a bad reaction to this, to increase dosage immediately. Dr E said he would speak to Rachael's GP and advise of what is needed for the "Just in Case Kit". Bev, Speech Therapist, demonstrated how to lightly tap on the chest in the event of choking. She explained that due to the wheelchair, the Heimleich manoeuvre is not practical but can mimic effect from the front to force and exhale. Bloods were taken for Riluzole function and for Dr A's clinic. The results will be sent to R Hospital. Rachael also donated blood for research into DNA of MND patients.

Tuesday, 19 October 2010

Clinic notes 20/10/10

Clinic notes 20/10/10

Current Medication:
Baclofen            30mg
Pregabalin         200mg
Riluzole             100mg
Ferrograd          325mg
Senna               10ml
Movicol             as required

I am still adjusting my Baclofen dose. 30mg leaves me with leg spasms/shakes 40mg leaves me drowsy and befuddled.

G. P :
On the advice of my speech-therapist, I have requested a "Just In Case Kit" as recommended by the MNDA. I am awaiting an appointment to discuss my particular requirements for the "Kit". My understanding of it is a little sketchy.

District Nurse: 
I have regular visits from the District Nurses and have discussed ongoing concerns, including:
·                  pressure sores
·                  bed pain / postural pain
·                  kidney ache
·                  morning headaches
·                  fatigue
·                  frequent waking
·                  overheating/shaking, teeth chattering and general excessive, adverse reaction to cold
·                  giggling hysterically until cramp of limbs, neck, throat, diaphragm!
memory failure

Lung Clinic:
- Pending details from Urology, the Lung Clinic has agreed to supervise my respiratory health during a suprapubic catheter insertion. I will be admitted to hospital for a few days.

Urology:
- awaiting appointment for a suprapubic catheter insertion. I expect to have a spinal anaesthetic. Urology will liaise with the Lung Clinic.
I can no longer weight-bear and use a hoist for all transfers. I have found 2 public toilets with hoists, though none in the Hospital.
In the mean time, some of the urgency has been allieviated, with the discovery of the 'Shoe and Sarong Technique'!

Gynaecology:
- I had a Mirena coil fitted 18/02/10 My periods have not regulated nor diminished. I intend to discuss an additional prescription of norethisterone, with my G. P. This has been effective for me, in the past but I am unsure of the implications of long-term use. Cauterisation is not an option, as it requires a general anaesthetic. I have a further consultation booked, with Gynaecology for 02/12/10. I have a prescription/request form, for blood tests, prior to that appointment.

Speech and Language:
-My Speech therapist has returned, following her maternity leave.
I experience frequent choking, from brittle foods, thin liquids or saliva. This happens mainly when I am tired, after exercise or exertion, in the evening and at night.
My speech has become increasingly unintelligible, particularly when I am tired. It is tiring to speak at all and I often reach a point of such utter exhaustion, that I am unable to form any word or meaningful sound. At these times I suffer blinding, thudding headaches.

Dietetics:
- my RIG is doing fine; no excessive seepage or soreness.
I am tolerating flushes and overnight feed well.
The transition to overnight feeding has been surprisingly smooth : my increased reliance on the hoist made daytime use impracticable. I was becoming quite weak. When the dietician suggested the change, I was relieved. Despite all my previous protestations decrying the overnight feed, it has proved a resounding success.

Nutricia:
- 750ml Nutrison Complete, overnight + 1 meal during the day, bowl of thick soup or equivalent.

Hydro:
I continue to get immeasurable benefit from a regular hydrotherapy session.
I could not quantify the positive effect that the pool and excercise has on my stress and tension level.
After hydrotherapy on a Friday, I have noticeably improved circulation throughout the weekend. My joints feel 'easier', less stiff and swollen. This also lasts for a few days.
I certainly sleep better on Friday nights and wake feeling more refreshed.
I am able to move or be moved, in the water, in ways that I can barely imagine, let alone remember on land.

Physio:
  - The physiotherapist has provided a Vista Neck brace and Air-Soft Hand splints. We discussed the manipulation that we can give to my joints at home. The physiotherapist agreed to come to my house and do some passive excercise training.

Occupational Therapist: 
- My Occupational Therapist has arranged an additional Ceiling Track for the Freeway P200 Hoist, through Westhome. I still have a Closomat toilet and a Profiling Bed

Moving and Handling:
- A Training company provides ongoing advice, assistance and training; their Occupational Therapist has helped devise my handling schedule etc

Podiatry:
-I can now access the team in the health centre and used the drop-in service, when my ingrown toenails became infected. The podiatrist advised me,  re poor circulation, to elevate my legs during the day, as well as at night. 

Orthotics:
- The orthotics department, have made me a pair of boots, to try to improve or preserve posture and support my ankle. I have a further appointment for 06/12/10 when I will be measured and cast for a splint. The splint made on my previous visit  no longer fits: it could have been made for another leg!

Care Funding:
 Friends help me to manage my support needs and we are pursuing a review of my current care provision.

Assistive Technology:
 -An NHS team is helping me to customise my Tobii C-Eye (P10).
They have provided a Possum Freedom system that allows hands free operation of my door intercom/phone and gives me a one button press call system to upstairs. We are in regular contact, via email. They are always helpful, if somebody has to phone them.
I recently 'starred' in a video interview for their Website, extolling the virtues of the Tobii C-Eye ( P10 ).

Wheelchair  Services:
- I now have foot straps to stop my feet slipping off the foot-plate.
I am still quite adept at manouvering my Invacare Spectra Plus but am able to maintain ever shorter distances. I have a wrist strap for 'walks' but need help halfway round the reservoir.

Dentist:
MNDA:
 AOB
Current anxiety triggers: 'Enduring Power of Attorney' - Finance, Staffing/Care Plan, Christmas, Ex, House, Loneliness



Monday, 18 October 2010

Emails exchanged with Dietician

"I was just waiting with regards to a call I received from Janice, district nurse, who was a bit concerned that you may be struggling with overnight feed. I was wondering if it would suit you if I visited this week to have a chat about it? Perhaps Friday afternoon?" - Claire


"Claire, whilst of course you are always welcome to visit, I am having no such problems. The transition to overnight feeding has been an immense relief to me. I am curious to know what problems Janice thought I might behaving." - Rachael


"I am glad to hear that the overnight feeding is working out well. I understand that Janice thought that there may have been some issues with the pump alarm going of at night and causing difficulty and that you were having some issues with choking sensations during the night? It may just have been a miscommunication. If you are happy with things currently, we can always organise a visit at a later date if that suits." - Claire


"Sorry for the confusion. Using the pump overnight has the downside that if it develops a fault, the alarm will wake me up. This is still however, hugely preferable to all the difficulties and anxieties of daytime use. I don't equate the choking sensations with pump use. They seem to be a seperate medical issue entirely. If you think a visit would be helpful that would be fine. My understanding is that choking on saliva a little, is par for the course with MND. Any help is appreciated." - Rachael


 "Sure we can always have a chat anyway. I can help with things if you're happy for me to come and visit. Would Friday afternoon at 2pm suit you?" - Claire


"Sorry, I've just re-read your email and Friday is out I'm afraid. I have an appointment at Hydro every Friday, which pretty much takes the day out of the equation. I really appreciate the session and take every precaution to safeguard against it. I have appointments on Wednesday and Thursday of next week but am generally free on Mondays and Tuesdays. Hope this doesn't put you out." - Rachael


"Monday would suit me, perhaps 10:30am?" - Claire

Friday, 15 October 2010

Hydro

Sharon went through full range of motion exercises with Rachael. She discussed pressure sores and pain experenced when lying in bed; requiring repositioning. Sharon recommended a review of Rachael's current care package. Sharon also noted that Rachael was in considerable pain when giggling attack became uncontrolled.

Email Received from Speech Therapist

"I know it's a while since I have been in touch but I could see from your emails that you were very busy. Thanks for keeping me in the picture. Anyway, time has moved on as it does and Lynsey has come back to us after her maternity leave so I am planning to transfer your Speech and Language Therapy back to her care. Sorry I did not get a chance to talk this through with you directly. I will pass your notes over to Lynsey and she will contact you to have a catch up when it's convenient for you. " - Mandy

Thursday, 14 October 2010

Email Received from MND Specialist Nurse

"Lindsay's theory is certainly one I would consider myself and would be an easy way to try and explain away some of the symptoms you describe. However, we are aware that in a small number of people affected by MND, the area of the brain responsible for planning and processing information and control of emotions can be affected. In some people, these changes are so slight, the symptoms are overlooked or indeed blamed on something else. We work very closely with the Cerebral Function Unit (Specialist Regional Memory Clinic) based here at Salford and would be happy to ask them to take a look at you following our discussions with you on the 20th if this is your wish. I acknowledge what a worry this must be for you, I think this email neither confirms or offers reassurance but pre-empts our discussions next week. (Perhaps to offer an explanation that this may be tied into the MND). Take care and don't hesitate to contact me should you wish to discuss further in the next week." - Sam

Visit from Wheelchair Services

Eric came and demonstrated the use of calf and foot straps. He then attached foot straps to Rachael's foot plates on her chair. Rachael asked Eric to look at her control panel, who fixed the problem immediately.

Monday, 11 October 2010

Email sent to MND Specialist Nurse

"I am due in clinic next Wedneday 20/10/10. I just want to make sure that we discuss the issue that has been bothering me. Sometime last year, I mentioned to Lindsay that I have been having trouble recalling specific words as required. Lindsay reassured me that this is something that happens to everyone,let alone somebody with fatigue like mine. This has continued to be a problem and has grown increasingly more so. I have always made lists and now depend on them entirely. I used to joke, "if it's not on the list, it won't get done!" - this is now true. I cannot recall whether I have taken my medication or even remember to have a feed. These are the thing my staff can help me with, that isn't my point. I am concerned by these lapses. Once I am reminded, I regain full memory and clarity. I know that forgetfulness is a common human condition but I really feel that this is beyond that. I am also aware that not everything in the world is about MND. I suppose I am looking for a little reassurance or confirmation. I'm emailing as I will not remember to tell you!" - Rachael

Chiropodist

The chiropodist attended to Rachael's toe and bandaged it up. She advised the toe must be kept clean and dry at all times. A glove must be worn in the shower over the foot. If the dressing gets wet, it must be changed immediately. The chiropodist also advised that we wipe between Rachael's toes with surgical spirit and cotton wool daily, and that Rachael's nails are filed fortnightly. The chiropodist advised the use of sudocreme on Rachael's toes. If still required, Rachael can attend the drop-in clinic next Monday between 1-2pm.

Sunday, 10 October 2010

Interview with Steve (Northwest Assistive Technology )

Northwest Assistive Technology provided me with advice, assistance and equipment: they asked if they could interview me for their new web-site. 

Interview notes  

Hi, my name is KB and I live with my daughter in an adapted house. I have Motor Neurone Disease (MND) or Amyotrophic lateral sclerosis (ALS) a neurological condition that destroys upper and/or lower motor neurones that a has effectively rendered me tetraplegic.

I am a wheelchair user which I operate with residual movement of my right hand. I use Assistive technology to help me normalise my environment, this includes a Possum Freedom system that allows hands free operation of my door intercom/phone and gives me a one button press call system to my daughter at night. My main piece of AT is the My-Tobii eye gaze system that is fantastic. It prevents me going insane; in fact if I am truthful it is the difference between wanting to live or just giving up. This sound dramatic but with my condition it is the isolation, not being able to communicate with the outside world that is so disheartening.

The system allows full use of computer applications by means of just sitting in front of the computer screen that hangs from my bed frame. The sensors that are embedded in the computer lock onto my eye-gaze when I dock into the ‘virtual box’ and follow my eye movement around the screen, if I dwell on an icon or application it will activate. If the object on screen is small I can select a zoom facility by activating a ghost sub-menu that brings up a variety of options, it all sounds so complicated but when you have been muted, muted in the way of using a computer for so long, you persevere. I can type pretty quickly now.

 I can have a real time conversation with my family that live around the world by the use of skype a brilliant invention that gives a audio/visual real-time conversation by means of a web-cam, in fact my consultant who is based at Hope hospital has suggested that we use it for clinic, which would help me enormously because when I have to go and see him it is so draining. I have to order an ambulance and then get jolted along the 20 odd miles to Hope and by the time I have been pushed and pulled through the various stages of the hospital and eventually sit in front of him, I am knackered and unable to speak.  

Northwest assistive technology have been brilliant and the reason I am taking part in this web project is to spread the word to other people in my condition that are or will be unable to use everyday appliances.

Best wishes KB.

Friday, 8 October 2010

Hydro

Sharon went through full range of motion exercises with Rachael. Rachael has lost muscle strength in her legs since using the hoist exclusively at home. In addition to Rachael's PA, Rachael require Sharon's assistance in getting into the pool and in getting dressed.

Visit from Occupational Therapist

Debbie attended with a representative from Westholme. The representative measured the wetroom and agreed to install a ceiling track above the toilet.

Tuesday, 5 October 2010

Email received from MND Specialist Nurse

"I have spoken this A.M. to Lesley, the secretary at Wy Hospital. She has spoken to Dr G who advises to cancel appointment. Dr G is your consultant and plans to move forward and place Suprapubic Catheter as discussed in email to you." - Sam

Monday, 4 October 2010

Visit From District Nurse

After general enquiries over Rachael’s health since last visit, we discussed Rachael’s overnight feeding and care situation. It was agreed Janice would return on 25/10/10 in order to complete a full assessment of the current care package. Janice agreed that overnight care is most definately required but explained that the decision would not be based on her assessment alone and advised we obtain further corroborative reports. Continence pads were also discussed and it was agreed that Janice would provide some samples from their store for Rachael to try out. Janice advised re: sudocreme regime for intimate application.

Friday, 1 October 2010

Hydro

Rachael had a full session in the pool. Rachael told Katie that her quads had been feeling tight all week. Katie did some exercises on Rachael’s legs and knee. She expressed concern that there was some damage to Rachael’s knee, she had seen Rachael’s knee lock and snap back, and noticed some inflammation. She advised that the change to now doing transfers exclusively by hoist means that Rachael’s knee should be exercised every day to prevent further, more serious damage. Katie told Rachael that Wheelchair Services in Preston will contact her re: footplates.