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pete
28th August 2012, 21:56
Hi

Just wondering if you feel the same as I do, the countless trips to hospitals, the waiting around ,and for what, a ten minute chat, about how are you feeling, my answers the same week after week, and there answers to my questions remain unanswered, so is there any point in going, nothing in the way of treatment , so why bother. Is this just me or do you feel the same.

Pete

Steve Corfield
29th August 2012, 08:49
I totally agree with you. My wife decided over 2 years ago not to bother going to see her consultant unless it was really necessary. To be honest she has had more help and advice off her palative nurse from St Giles. Hope you are feeling a bit better today.

Steve :)

pete
29th August 2012, 09:07
hi Steve,

Thanks ,I began to think I was the only one who felt that way, good to hear your wife gets some help, you cannot be that far from us being in Heath Hayes, do you use staffs or the QE for your wife's care

Regards

Pete

Steve Corfield
29th August 2012, 10:08
Hi Pete, we use City General in Stoke but as Anne cannot travel unless by paramedic ambulance they tend to come here to see us.

Steve

petal
29th August 2012, 12:31
HI my husband also stopped going to appoint . about two years ago to stressful
.

caz
29th August 2012, 12:40
i totally agree .after having hubbies cancelled again we have decided not to bother seeing the neurologist.its very rude of him not to bother even saying why it has been cancelled each time and to be honest he knew beginning of feb.after waiting a fortnight by phone and waiting for an appointment we sat sat in the drs office and asked him to chase it up .even he was cross to find hubby wasnt even in the system and first appointment wasnt till june.we begged him to tell us what was in the letter on his screen as we thought hubbys cancer had returned and he very bravely told us it was mnd .so the neurologist knew beginning feb how our lives were going to be utterly destroyed and basically did nothing.so when we had our app with him middle march it wasnt a shock to be told it was mnd.says it all doesnt it.we are with our local hospice now and everything that can be done will be done through them but agree with you once diagnosis is given the neurologist cant do anything else.hope you keeping well.x

angnmick
29th August 2012, 13:52
Hi guys
Mick says he feels the same and our consultant is fantastic Dr Ealing @ Salford royal, he has now arranged to Skype Mick on pre arranged dates instead if it is too much for him. He even provided us with a better web cam so that he can get a clearer picture of Mick with anything new that is going on, he is always available via email and the MND wonderful nurses, who will always help as much as they can too. Of course they do need to see you from time to time so that they can document what is going on for future studies etc and to make comparisons for their diagnosis, I remember early on Mick suffered with something that turned out to be a toxic poisioning not related to MND ciguatera toxcity but we just thought it was the beast raring its ugly head how wrong we were, so it is good to keep in touch and SKYPE is definately working for us. xx Ang

Graham
29th August 2012, 16:01
Hi Pete,

I too agree with you, I have not visited clinic for over two years, for the exact same reasons you give.

The NHS does not understand how severe MND is. Credit to Dr Ealing at Hope hospital for offering skype. Unfortuneatly I don't have skype.

Beware, the accusation will come if you ask for a PEG, "your FVP is too low for one to be fitted, you did not come to clinic"

pete
29th August 2012, 16:39
HI my husband also stopped going to appoint . about two years ago to stressful
.

Hi petal,

I can understand totally, it is a struggle when you are able bodied, but it seems hospitals assume you can keep going, because they think it's worth it, for me unless I need help, it's going to be when I can more than when they summon me.

Regards
Pete

pete
29th August 2012, 16:48
Hi caz.

I think that the way you have been treated is unforgivable, luckily I have a very good neuro, and quite apart from her telling me the news non of us wanted to hear, she has been very good, but why they insist on the visits knowing full well they can do nothing for you, so it all seems a waste of fuel and time , the one thing I won't miss is being viewed by students who are always in the room,training they say to become future neurologists, I feel awkward with one to one and four staring at you is a bit much, oh well that's life,keep smiling best wishes to you all.

Regards
Pete.

pete
29th August 2012, 16:57
Hi ang,

Well that's a really good idea from your neuro, apart from its easier for you and mick, it has got to be the way forward, in MND appointments, We are lucky at the moment still being mobile ,but can see soon the way forward is what you have now. Best wisHes to you and MIck, give him my regards, and to go easy on the makeup when he is on Camera.

Regards

Pete.

pete
29th August 2012, 17:08
Hi Pete,

I too agree with you, I have not visited clinic for over two years, for the exact same reasons you give.

The NHS does not understand how severe MND is. Credit to Dr Ealing at Hope hospital for offering skype. Unfortuneatly I don't have skype.

Beware, the accusation will come if you ask for a PEG, "your FVP is too low for one to be fitted, you did not come to clinic"

Hi Graham,

Good too hear from you, hope your trials are getting easier, any news on being released home yet, Yes the dreaded peg issue will rear its head next month, despite me keep telling them that food isn't a problem as yet, it's Balance that's my foremost issue , and am debating the advice from all the folks on here, as to what to get , to stop me looking like I have had one too many .? As for breathing problems then again had none apart from the odd spell of asthma , but nothing MND related so far.

Regards
Pete.

teynhambees
29th August 2012, 19:21
Pete,
Ironically, I have come to that conclusion "Why bother" today....In May I saw my "Mnd neurologist" with the MND Nurse present for the first time and to say it was a disaster is an under statement! She was too busy using her mobile, 3 times in all and one text message about A DRESS! she was buying. She completely got it all wrong.

Some 2 months later I got a letter cc'd to my GP stating, "He is unable to drive" amongst other factually incorrect statements. She should have written unable to drive vehicles relating to my job! This wasn't the only factually incorrect statement and this has ended up in a complaint asking for the letter to be corrected. I have yet to recieve a copy......

Today I went to a SALT, O/T and Physio appointments and to my astonishment found an amended letter typed 21 days ago in SALT file, which I read and pointed out I had yet to recieve it....furious :mad: adding to my annoyance. The O/T was a waste of time....suggested relaxation and fatigue management....Physio....waste of time...I handed them a copy of a report compiled by a private physio...to be told that "we change staff today so we won't see you again."...so i start all over again with next O/T and Physio.....(sigh...)

So, I really think I'm wasting my precious time and annual leave and fed up with at every turn pardon the pun being forced down my throat.. "Peg feeding" being mentioned by everyone I have an appointment with! Life's tooo short to mess about with all these stressful appointments...trying to work full time, live a "normal" life and get on I could do without all this agrivation so unless something changes I shall manage it myself. Any yet again the MND Nurse is on annual leave!
Scott

pete
29th August 2012, 19:52
Pete,
Ironically, I have come to that conclusion "Why bother" today....In May I saw my "Mnd neurologist" with the MND Nurse present for the first time and to say it was a disaster is an under statement! She was too busy using her mobile, 3 times in all and one text message about A DRESS! she was buying. She completely got it all wrong.

Some 2 months later I got a letter cc'd to my GP stating, "He is unable to drive" amongst other factually incorrect statements. She should have written unable to drive vehicles relating to my job! This wasn't the only factually incorrect statement and this has ended up in a complaint asking for the letter to be corrected. I have yet to recieve a copy......

Today I went to a SALT, O/T and Physio appointments and to my astonishment found an amended letter typed 21 days ago in SALT file, which I read and pointed out I had yet to recieve it....furious :mad: adding to my annoyance. The O/T was a waste of time....suggested relaxation and fatigue management....Physio....waste of time...I handed them a copy of a report compiled by a private physio...to be told that "we change staff today so we won't see you again."...so i start all over again with next O/T and Physio.....(sigh...)

So, I really think I'm wasting my precious time and annual leave and fed up with at every turn pardon the pun being forced down my throat.. "Peg feeding" being mentioned by everyone I have an appointment with! Life's tooo short to mess about with all these stressful appointments...trying to work full time, live a "normal" life and get on I could do without all this agrivation so unless something changes I shall manage it myself. Any yet again the MND Nurse is on annual leave!
Scott

Hi Scott,

Nothing in your post surprises me anymore, I was until four years ago blissfully ignorant of MND and pretty much all the other Conditions they thought it may be, that lead to my diagnosis. and it was matter of fact,, quote, It is thought you are presenting Bulbar Symptoms short pause... I am so sorry its not better news. And that was it short and sweet, Never had anything in writing since ,only more appointments .with a host of folk. i never knew existed until now . And after seeing them the once ,wondered if the fact the hospital was so scared by bad publicity,they made a point now of overdoing everything,, as a way to be seen in a much better light by the press and TV after such a damming report on it .Your right when you say you have a life Scott, live it as well as you can, for as long as you can , Best wishes to you both.

pete

Gwen
29th August 2012, 20:51
Hi, my husband John has MND recently diagnosed and unfortunately rapidly progressing. His respiratory muscles are failing. We were on time for the appointment with his consultant. Despite all this, the consultant keep us waiting in the confined space of an airless corridor outside his office for over an hour. The patient before us came out and went and still we sat there. Eventually, as we were on the point of leaving, he asked us to come in. He had nothing to say to us apart from asking about John's symptoms. In response to my question about whether he knew of any research trials that John could take part in, he said he knew of none. I agree, what is the point of John (who has no energy and is breathless with any exertion) go through any more such visits?

Graham
29th August 2012, 21:10
Gwen,

There is a diaphram pacing trial that may be appropriate. Contact mnda.

pete
29th August 2012, 23:13
Hi, my husband John has MND recently diagnosed and unfortunately rapidly progressing. His respiratory muscles are failing. We were on time for the appointment with his consultant. Despite all this, the consultant keep us waiting in the confined space of an airless corridor outside his office for over an hour. The patient before us came out and went and still we sat there. Eventually, as we were on the point of leaving, he asked us to come in. He had nothing to say to us apart from asking about John's symptoms. In response to my question about whether he knew of any research trials that John could take part in, he said he knew of none. I agree, what is the point of John (who has no energy and is breathless with any exertion) go through any more such visits?

Hello Gwen.

Sorry to hear that your Hospital trip was far worse than mine, and for John to have to endure that for as long as he did, I cannot pretend to know how he feels, other than my brother who has COPD, and is older than me , suffers quite badly with any exertion , I try to justify the way we are treated, as it's the accepted detached manner of the specialist , having no feelings at all towards the patient , is the way they deal with not being able to even offer any meaningful, treatment , so why make us go in the first place, with what's actually done ,surely ,it could be done over the phone, or is it ,them justifying,there role and ticking the boxes to show that they are seeing patients, best wishes to you both let's hope for good news .

Regards
Pete.

caz
29th August 2012, 23:27
well might go one better than that!after a few diagrams and you appear to have the als type he comes out with (i kid you not) "when we are born we all know we are going to die but in your case its shorter than most -followed by him drawing a line and explaining due to symptons probably 4 years.i half expected bloody monty python to storm the room singing always look on the bright side of life.!!!!!!!.what a complete idiot.even the nurse looked stunned.understandably you can t wonder why we dont want to go back.we have a fantastic consultant at our local hospice and even she agreed he couldnt do anything that couldnt be done with her so will stick with her.lucky patients who are given the news by a compassionate neurologist.x

pete
30th August 2012, 09:10
Oh Caz,

I am so sorry, but the picture you gave me was just to much, The wife came in to see what all the coughing was about ,it's a side effect of my symptoms but god so glad to see you have managed to keep your sense of humour, even with all the things going on, that's the last thing we want to let go is the ability to see something other than the bad news , it keeps you sane, And it's good to hear you have found someone ,who is at least willing to listen and help you both.
And yes he was right about us all going to pop our clogs at some point, but there are better ways to tell someone ,sadly he really does appear to have no feelings at all. must be part of the training to have all compassion removed before being let loose on patients. Keep smiling and best wishes to you.

Pete x

15storeys
30th August 2012, 11:33
Have to admit that it's all feeling like a waste of time at the moment. I've been off work for two weeks now; all my GP needs is some advice from my neuro about some new medication but he can't even be bothered to respond to my GPs messages. Meanwhile, I'm confined to the house and unable to do anything. I've been trying my hardest to hang onto my job despite it being a struggle, but now I'm starting to feel that my neuro is not really bothered at all. During appointments with him he doesn't even look at me or tell me the results of examinations - he normally just sends a follow up letter with the news in.

I actually attended a routine clinic appointment last month while my regular neuro was on leave and the registrar who saw me said he was shocked that my neuro only sees me once a year as he should be seeing me every three months at least. He told me that a new appointment would be arranged for me, but as yet no appointment has been made.

The physio was pretty good for me but to be honest I don't make appointments any more as the symptoms have progressed to a stage where whatever the physio can offer is a drop in the ocean. The SALT team were nice but didn't offer anything practical to help.

It's awful but I do feel that everything offered to MND patients is just 'window dressing'. They have to appear to be doing something but in reality there is little they can do for us so the quality of the service is not really a concern for them.

Becky

Treelover
30th August 2012, 13:55
Hi, can someone tell me what the SALT team is? Never heard of it. I have only seen the Neuro once and she asked when I wanted to go back, I said I didn't know as this was all new to me so we have made it 6 months. I can call the nurse with any queries, which I have done. Spent a dreadful morning at Papworth for baseline respiratory tests. Looking around at all the other patients I asked was it MND day? This was confirmed. It was sad and depressing in so many ways. To see your future laid out in various stages and to realise that these people were going there every 3 months for what? One lady was obviously very poorly and there seemed no point in her being there. I declined a further appointment as I felt I don't need to have my deterioration measured! Of course I may change my mind on that one later.

JONESY
30th August 2012, 14:21
I seem to have a different experience. The investigations up to my diagnosis were frustrating but the consultation was fine and obviously not a shock to me. In fact the MND nurse thought I was taking it too well and seemed think I should be in floods of tears. The first 2 clinics were in Newcastle which is 90 miles away [no motorway] but we now have an outreach clinic at Penrith which is 30 miles away. I attend every 3 months now and an assessment is made of my deterioration and further treatment options are discussed. My speech therapist and physio have been seeing me monthly at home. Physio has referred me for drop foot aids and to wheelchair services before I needed them but ready when i did need them.They keep in touch and upgrade my chair when neccessary. The dietician keeps in touch by text on a monthly basis. District nurse visits every week or two and I have excellent carers. I can contact anyone of these professionals by e-mail or text if I have a problem. This is the standard everyone in this area with mnd receives. We also have hospice at home . At present I have massages from one of the therapists. I attend a drop in centre for people and relatives with life limiting illnesses and next month hope to join one of their living for today programmes. With my family, friends and visitors I have a very full life.

Chris

15storeys
30th August 2012, 15:52
SALT = Speech and Language Therapy. They do so much more though and gave me advice on my breathing (as it was this that was affecting my speech) and also looked at my swallowing. After a while though there was little they could do for me

pete
30th August 2012, 16:28
Hi, can someone tell me what the SALT team is? Never heard of it. I have only seen the Neuro once and she asked when I wanted to go back, I said I didn't know as this was all new to me so we have made it 6 months. I can call the nurse with any queries, which I have done. Spent a dreadful morning at Papworth for baseline respiratory tests. Looking around at all the other patients I asked was it MND day? This was confirmed. It was sad and depressing in so many ways. To see your future laid out in various stages and to realise that these people were going there every 3 months for what? One lady was obviously very poorly and there seemed no point in her being there. I declined a further appointment as I felt I don't need to have my deterioration measured! Of course I may change my mind on that one later.

Hi
pretty much the speech and language therapy gang ,look after you on a basis of if you need them you ring them ,well at least mine does, she is a star ,never down and always positive ,something lacking with the other depts , Anyway it really applies if you have swallowing difficulties , they monitor the muscles controling you throat and can tell when your going to need the PEG , to avoid ingesting food into you lungs , as for the speech side of things ,they cannot do much once its gone its gone , and despite the exercises they suggest I reckon i am not going to be singing in the choir anytime soon ? .

regards

pete

Sam1970
30th August 2012, 16:51
Hi Pete
The person I care for/live with feels the same way. We asked what the benefit was of attending the appointments, and apparently it's so they can monitor your progress, as obviously there is nothing else they can do.
Anyway, we have not been to see the neurologist and manage really well with the input of the GP and great local "field" staff. The consultant responsible for the breathing equipment visited us at home with our GP so it seems that all services are available as and when you need them, without stressful visits to hospital.
As for monitoring progress, we do that at home with the support of other healthcare professionals who will come and visit us.
Good luck,
Sam

pete
30th August 2012, 18:20
I seem to have a different experience. The investigations up to my diagnosis were frustrating but the consultation was fine and obviously not a shock to me. In fact the MND nurse thought I was taking it too well and seemed think I should be in floods of tears. The first 2 clinics were in Newcastle which is 90 miles away [no motorway] but we now have an outreach clinic at Penrith which is 30 miles away. I attend every 3 months now and an assessment is made of my deterioration and further treatment options are discussed. My speech therapist and physio have been seeing me monthly at home. Physio has referred me for drop foot aids and to wheelchair services before I needed them but ready when i did need them.They keep in touch and upgrade my chair when neccessary. The dietician keeps in touch by text on a monthly basis. District nurse visits every week or two and I have excellent carers. I can contact anyone of these professionals by e-mail or text if I have a problem. This is the standard everyone in this area with mnd receives. We also have hospice at home . At present I have massages from one of the therapists. I attend a drop in centre for people and relatives with life limiting illnesses and next month hope to join one of their living for today programmes. With my family, friends and visitors I have a very full life.

Chris
Hello Chris,
Glad your getting the treatment you deserve, After the years of you seeing to others needs , its good to know there are areas that do offer what some need, but i fear its not all over the country, But as long as the ones who need help receive it when its called for ,that's pretty much all we can ask for, with no treatment on the horizon , We will have to do what needs to be done as and when we need it.

regards
pete

pete
30th August 2012, 18:29
Hi Pete
The person I care for/live with feels the same way. We asked what the benefit was of attending the appointments, and apparently it's so they can monitor your progress, as obviously there is nothing else they can do.
Anyway, we have not been to see the neurologist and manage really well with the input of the GP and great local "field" staff. The consultant responsible for the breathing equipment visited us at home with our GP so it seems that all services are available as and when you need them, without stressful visits to hospital.
As for monitoring progress, we do that at home with the support of other healthcare professionals who will come and visit us.
Good luck,
Sam

Hi Sam,

Good to hear from you again and glad you have a good local team , I am much the same to be honest as long as i get to see the SALT every three months she is a wonder, and gives me the once over and then a chat about things other than MND , for which i am truly grateful , i am not going to let MND be the only topic, it takes enough,, without being the only thing we talk about. the GP is there if i need him and well that covers all my needs at present , Wish you all the very best of luck and keep in touch ,.

Regards
pete

Gwen
30th August 2012, 23:00
Gwen,

There is a diaphram pacing trial that may be appropriate. Contact mnda.

Thanks Graham. I did enquire about this and unfortunately John is not eligible as he is already using a ventilator. I understand that if the trial is successful, in the future, diaphram pacing may be offered to all mnd patients who want it. Unfortunately, this may not be in time for John. I can't believe this is happening. He was only diagnosed in April this year.

berdbrain
30th August 2012, 23:20
hi there, can I ask, what's a diaghram pacing trial? my sis in law's breathing has deteriorated a little.
cheeers

john
30th August 2012, 23:40
Hi berdbrain,
A diaphragm pacer is a piece of equipment which stimulates the muscles which make you breath. The Americans approved them for use some time ago . I imagine they work a bit like a heart pacemaker and keep things working when they might otherwise fail. They seem to be a series of electrodes implanted into the area of the chest which are then connected to a devise which provides the stimulus needed to keep the diaphragm operating to keep breathing going despite the motor nerve failure that is taking place. I am sure there will be a better explanation from someone on here. They are being trialled I think at Sheffield before being approved for use in the U K.
If you look on patientslikeme website you will find feedback from people using them
If you go to the home page for mnda and enter diaphragm pacer trial in the search box at the top of the page you will get a lot of better info about the trial and it's funding.

John

miranda
31st August 2012, 10:18
Hi berdbrain - ask cis-in-law to ask Rachael - MND specialist nurse at JR for info.

berdbrain
31st August 2012, 13:56
thanks for the replies, Miranda I will tell her to ask Rachael - do you need to have something like this? (just being nosy! - you don't need to tell me)
Debbie

berdbrain
31st August 2012, 14:44
Thanks so much for that John, your explanation is a good for me and I will look up your links.
thanks again...it sounds as if it could be very possibly a great thing to help with breathing.
cheers
Debbie

slim
2nd September 2012, 18:26
Hi Pete
We have had this discussion every time we come back from my brothers appointment, we comment on what a cushy job the consultant has who has a full diary of people to see and say hows it going..... any problems.... ok see you in a few weeks.."next"
on his last visit there were 3 students sat in and not one of them asked any questions. we would be more than happy to answer questions regarding his MND with the hope it may assist in research.
also we have mentioned many times that during the past year since diagnosis no one has asked us about research etc.
or my brothers history as he has MND with Frontotemporal Lobar Dementia which they tell us is quite rare, we expected someone would want to speak to us regarding research etc.

pete
2nd September 2012, 19:05
Hi Slim,

Sounds just like my allotted time, it's really annoying because for me because for the six weeks prior to going I list everything I wanto ask, but being unable to speak myself, I spend the time nodding as she asks the same questions I answered the last time ,yes I am still eating, yes I can still get about yes I can use the loo without help, the reply is much the same Well your doing very well , but we need to get the peg fitted , I ask why , because we need to do it while your fit and well, why I am fine eating well not lost weight , I am fine why do I need that, because you will in time, but not now that ends the consultation ,because I have dared to not agree to having the procedure they want to do , seems as if they have a standard progress sheet and nothing will vary that, whatever you the patient wants or feels, Sorry might sound ungrateful ,but until they talk to me about what they want to do with new trials,and involve me as a person not an hospital number , take my chances as I am . wish you well , and to Your brother , this is one cruel disease , please wish him all the best from me .

Pete.

teynhambees
2nd September 2012, 19:27
Pete & Slim,

I have had another offer of an appointment to see a Podiatrist amongst the O/T, Physio and SALT...funny that as its taken since May for all these to materialise as a result of the letter of complaint. However, Slim you mention Trials and research oddly enough the Neuro who saw me in hospital and diagnosed my Kennedy's has put me forward for research and trials in complete contrast to the "Specialist" Neuro, who like all of the others seems obsessed with PEG fitting and feeding. I think it really depends on the Neuro you see and if they have some 'special' interest in your case. This is who is looking at Kennedy's disease and they want more case studies Dr. Pietro Fratta @ UCL

http://www.ucl.ac.uk/ion/departments/sobell/Research/LGreensmith

But why oh why are they so obsessed with PEG??? I can see that you have to be fit enough but I cannot see why its discussed straight off the bat. It's a personal choice and personally I don't want it ever i'd rather not be here and have to endure that!

Scott

pete
2nd September 2012, 22:19
Hi Scott,
Good luck with the trials , Why it isnt the same with MND ,similar disease but so few and none in our area ,that i know of ,but then again i have had two neuros now and neither have ever mentioned anything but RiluteK, Having reached sixty odd ,cannot talk, walking getting more difficult, and they keep on about the peg. I can eat the one thing i dont need help with at this time and they want me to have a peg, like you i will pass on that ,

regards
pete

pete
20th March 2013, 17:06
Hi Everyone,

Well was dragged kicking and moaning to the latest batch of appointments, as usual the obligatory wait to be seen, and the usual complaints from several patients who had been kept waiting for over an hour, to see there specialists, the wife answered the questions as I was asked by a few fellow patients what was wrong with me, the wife bless her duly responded as she has learnt to do, still very few know about MND, the usual questions are ,Is it serious and why can't he talk, once they know you cant talk your pretty much ignored from now on !!! always makes me smile for some reason , and a prolonged discussion began as they talked about my condition , how lucky I was being able to walk, and how cheerful I was ,made another smile, luckily the Dietician rescued us from the rest, IT was short and sweet as always my ten minutes flew by and the next one in six months !!, onto the next one only three doors down the corridor in and we ran through the Rating scale, and how well I looked all things considered ?, we totted up the score 32 so I was told wasn't I doing well, !!!!, so that was my day , weighed, measured and told to go and come back in six months. For another session, As I drove back thought to myself , why am I not happier ,should be,, it was good news from both, just don't seem to make a lot of difference in the grand scheme of things , you know it's going to get a lot worse, and they never mention any possible treatments , so it's just a matter of doing the best you can while you can for as long as you can , God bless medical research , thanks for nothing. And I do mean Nothing.

Terry
20th March 2013, 17:54
Yeah Pete;
It is hard when you can't talk mind you I do now look at other disabled people in a different light. My nurse at the Hospice asked if my Neurologist was any good. I said, "not really, he hasn't cured me yet".
He's a lovely chap. I go to must appointments but postpone some till later.
Regards, Terry

pete
20th March 2013, 19:59
Hello Tel,

Yes the same with me, only it's a lady, Bless her she is always so positive despite knowing there is very little she can offer in treatment, I always come away feeling better for having had a chat, sounds crazy I know , but she has always been straight with all the information, without being cold and detached, it makes a difference, as they say its not what you say, but the way it's said, and your right about the way you view disabled folk, having recently become one myself, it makes me smile when folk find you can't talk anymore ,you must also have deafness, and are treated to part sign language as they assume your mental age is around five years old , don't bother correcting them anymore just take the sympathy

Cheers mate stay well ,chin up

Pete

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