I'm hoping someone can help with advice in respect of my Mother. She was diagnosed as having Parkinsons in 2008 but her condition has deteriorated significantly. She is now unable to walk unaided, I cannot understand a word she says, she has trouble breathing, unfortunately struggles to control her bladder and struggles with eating. She falls daily and although she manages to smile through it, life is hard for her.
During our regular hospital visits, she had hoped for deep brain surgery but was told that was a no-go, as her cognitive tests showed signs of deteriioration, we are now in real hope of some sort of new injections into her intestine which will improve the input of endorphine (according to the NHS, this costs £30,000 per year and is often rejected).
Looking at the signs of Multiple Systems Atropothy, and PSP, it jumps out to me that she is in the advanced signs of either of these (particularly MSA) especially as she is only 59 and is also showing signs of dementia (although not overly forgetful or incoherent, my wife is a trainee Doctor and believes she is showing signs of this).
On our last visit with the Parkinson Nurse and Doctor, they do not think its PSP or MSA because when she falls she does not black out, she simply loses balance. It is reassuring that they think it is not one of these but the symptoms of MSA and PSP jump out at me. One one hand, I don't want to mention about the signs of dementia, as it could reduce the chances of these new injections.
I need the advice of any people suffering this, or those who have cared for these unfortunate people on what they think it could be, if the NHS has previously made mistakes on diagnosis and any advice on how to care for her.