Work stopped, hobbies stopped, talking compromised, smiling impaired,etc,etc. so many aspects of my former normal life has gone I feel like MSA stole my personality. But the brain is still sharp so some of me still shows in the written word. I can still operate the laptop keyboard and can say what I want how I want. But sometimes I want to actually write such as a letter,card or even a short note.
Real writing with a pen is very difficult and slow but I know exactly what I want to say so all I need to do is dictate to someone .Three times I have done this with three different "scribes" and each time they took it upon themselves to change what I had spoken. No asking, no suggesting, just changed it.
WTF is going on ? I let it go but next time I am going to blow up.
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ReverendBadger
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Shame that we don't live closer to you, after working as a PA all my life I'm used to writing what I'm told toDoesn't mean I agree with it and I've had some 'Frank and open discussions ' over the years but at least it was sorted from the start.
I know what you mean about Yr personality changing, I feel as if 70 yrs have been knocked off my age making me a child again. Had a spectacular row with the warrd sister yesterday
She said I was an awkward patient ruining thhe smooth running of the ward and I said she was like a small child playing at Dr's and nurses
and that I did indeed know more about MSA than she did and I even knew it was nothing to do with MRSA
say it again, louderand slower and then say "and it is just as nasty as it sounds, isn't it?" then ask them to tell you the difference between what they think it is and what it is. never let them so away with the wrong idea
i suggest you contact MSAT (the Multple Atrophy Trust) in London either by email or phone and they may talk to them in person or provide you with the info you need, tel 0333 323 4591 . i'll come back with the email address
I totally understand what you mean. MSA stole Peter piece by piece till he was no longer the man he wanted to be. He hated it. But insde he was still him, his dodgy sense of humour, the knowledge and stories we all shared. Though he has gone i always remember him and that MSA can't take. Regards Sharon. X
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