Friday, 29 October 2010


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


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.

- 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'!

- 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.

- 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.

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

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.

  - 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

-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. 

- 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.

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


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


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


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


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.

Email received from Dietician

“Glad to hear training was useful, if you do ever want any additional training or have some queries, let me know. If you’re happy with the way the feeding is going at the moment, that’s great! We shall leave it as it is. If you do feel at any point that you are not getting enough energy from the overnight feed as a result of the breaks, we can always try a higher energy feed over the same time period. Feel free to have a think about it and let me know.” - Claire