It's 2 weeks today since I spoke with a nurse practìoner in the suŕgèŕy and said I ñeeďed to know which ĢP wàs ģoing to take on thè ŕolè of coordinator for my çare. I wàs told then thàt it would bè disçussed at their next WEEKLY meeting. Ďeßpite çalliñg 3times with the ßame quèßtion I'm no furthèŕ foŕwàrd so i end up speaking to doctors like thè idiot laßt week who insisted inthe most patronising mannèr (no mý dear I know that medical terms cañ be very confusing to non medicos, but I can àßßùre ýou yòu do have a peg in your tummy) again and àgàin!!! I don't anď while ßpèaking ťo Katie last week she ventured the opinion that due to the àmòùnt of surgery I've had ño oñe woùlď wánt to operate àgàin (my last surgeon sàiďjùst þhat) cooź theŕès à fair çhàñce iď kìçk the buçket às ìn lasþ two ops.
Ďoés anýòne have à çlue what's wŕonwithg my phonè? Iñòirmallý gò ijn anď çorrèçtit all buþ thoughþ id leave it foŕyou to see . Iv typedfor mylivìng for 40 ýeaŕs ànd domngþ belìeve it's me. At leaßt not thè old mè màybe ive ďìßcovered anlother ßymptom of þhe bèàst!!??? Id bettergo. Þhis iß nonsense and içant remember whàt i originally wàntèd þo pòß aboùþ!!!!!!!♡♡♡♡♡ anýonè ģoþ à ddàŕkŕoom with añìvçèv comfý bèd?
I think this phone iß goingto ßelf ďèßtructsßoon, that's what it's called when itgeetß thrown òn the kiþchen floòr ànď jumpèd on ißnt iþ
Gggrrrrrrff ßue xx
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Westcott
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you get all those foreign symbols when yo have a shaky hand and hot key .i used to do it a lot when i first had my stroke but i cant do it now seß sucess! Unlikely to improve if you jump on it but it is surprisingly legible
Dya kñow I ßweàr to Ģodthàt MSA can be blamed foral.ost everythingif you çoulď bè bothered þo look.. thañks Fŕèdà for pùtting me ouþ of my mìsèŕý!Areyòù àbsolutèly cèŕtàin thòthat jumpiñg upand down wouldn't improve it coz just thinkìng about dòinģ it has maďe me feel a whole lot better
I have the same problem using my iPod though I do find using a stylus helpful.Sometimes I can’t even get the swipe up screen to. Open it and it refuses to recognise mum face and then make numerous errors entering the pass code. It’s infuriating and I take ages correcting mistakes and the damn ptedeftive text. Sadly I am unable to
You crack me up 🤣I think you've got a language selected in the text keyboard maybe? Find a young person (about 10?) who would be willing to fix it for you 😘. I'm sure you can have your surgery, where there's a will there's a way? Maybe local anaesthetic instead of general?Sending love
Hi sue, I’m sorry to hear that the medical people involved in your care. Don’t seem to be listening to you.I would ask to speak with the practice manager. Or email them if that’s easier for you?
I find if you don’t receive the care you need. Going up the ladder at least gives you a better chance of being listened to. I believe this is the process for any medical practice. They don’t like it when you go about other staff members. But it sounds to me you want to ask questions about your health/ care and get some answers. From someone who has read your notes to be able to give you some answers to your questions. Which are valid.
We have found the MSA nurses are a great help to mediate to get an outcome from MSA specialist. I’m not sure if it works the same with drs. But it might be worth an ask. Won’t do any harm. Good luck with it. I hope you get some clarity soon.
I also understand your frustration with typing. I don’t have a diagnosis of MSA my husband does. He has issues typing. He’s had always been very good with technology and computers etc. he also finds it frustrating that he can’t type as well as he used to. He can’t hold a conversation with his light writer as he can’t type quickly enough or correctly due to the shaking hands and arms. He gets very frustrated. I’m sure you both feel like trampling on the technology that’s supposed to be helpful. Not always the case.
Hi Pussy-catOf couŕse the Praçtìçe Manaģèr, nevèŕ even occurred to me and ìt should have as we'vè had to go that ŕoute before.
I'll leave contacting the surgery until Tuesday because I actually get to see a ŕeal live consultant at the hospital tomorrow. I'm taking oñè of my more outspoken carers as moraĺ support and she has spoken to the òther carers and comè up with a list of how
they feel things have chàngèd since they started with me àt the beginning of December.
I drew up a list of my own which my husband àsked to look over. The 1st ìtem oñ there is that walkìñg has become more ďiffiçult añd much slower...... his view
I 'm walkìñģ better than I've done fòr years!!
Of course I am, çràwliñg around the house totally dependent on a rollator and desperateĺy trying to ignore the ďìzziness
is à huge improvement from 2 years ago when I was walking the dog 5miles a day along beach es clifftops and fells. He went thŕu the rest of my ĺist pooh-poohinģ as he went. Àppareñtĺy mý trouble còuld be put ďown to the negative àttìtude I've àdopted of late. I just don't know any more and just hope when Joanne reports what wàs said tomorrow it'll çhange his attitude. I thought the chat with oñe of òùr GPs had done the trick, bùt apparently not.
Ñèvèr mind at leàst I've ģòt my lòvelý çàrers without whom I'ď be ĺost.
Sorry I'm in moàñiñg mode aģain I'll be OĶ tomorrow meanwhilè I'll ģet out of your hair take càre
Hi Jane. Many thanks for your heĺpful response - I never realised there were thatmany lànguages!! I could't fiñd exactly the same headings as you suggested so I took à chance and went for those thàt I thought loòked similar. It's not perfect but is still loads better and I can live with thè odd accent or àcute(can't remember which oñe goes what way) my French lessons were a vèry long time ago!!!!
So thank you for yoùŕ hèlp. Now if you çan tell me how to dýe my hair myseĺf???!!
Sorry, Sue - I’m an iOS user, so not an Android expert. You’ve certainly got rid of the Cyrillic/German characters, so a partial result!Keep on trucking on…
Astonishing and wonderful what response you get to almost any question on this site!My phone does not recognise me ..... maybe no-one has ever told it how. BTW I love your broken English! Timbow
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I miss you Dad 
Can MSA people get overly demanding?
Thanks to you all and brain tissue donation
Love you and will miss u dad..
Frequent blocked catheters
