I've just found this site and I'm hoping it's going to be a great comfort to me. Looking through some of the other blogs on here, I'm already feeling a huge sense of relief that this website exists and that there are people out there that can relate to how I'm feeling (though obviously I wish that no-one had to go through this).
My mum has suffered from Alien Hand Syndrome for as long as I can remember, well over 30 years. However she has deteriorated considerably over the past year; having no balance, falling over, coughing constantly, forgetting words, unable to write the simplest of words (like my name), getting very confused about everyday things, getting lost in previously familiar places, fretting about the tiniest of things, losing her voice, getting more and more jittery in her arm and shoulder etc.
She's been seeing a neurologist for a couple of years about the Alien Hand Syndrome, then just before Christmas she said to me that the doctor gave her a new name for the condition… Corticobasal Syndrome.
Me being me, I looked started doing some research on this and have been in shock for the past couple of weeks. I'm obviously devastated at everything I've read and the horrific way her future is looking. But the fact that my mum is seemingly oblivious to what is actually wrong with her is so upsetting. She has no idea. She just thinks that she has a 'posh new name' for the Alien Hand Syndrome.
I feel so utterly confused and shellshocked about it all. Dealing with the diagnosis and knowing what is going to happen to her over the next few years is making me so stressed and upset (as well as incredibly angry), but the fact that my mum and dad are in the dark about it all makes it all the more difficult to deal with. I just don't know what to do, and to be honest I feel like I'm cracking up about it all. I can't stop crying and I can only just face getting up and going to work everyday. I've not told any of my friends and to be honest have been pushing them away so I don't have to see them, which would lead to me telling them when they see how wrecked I look. It's almost like if I say it out loud to someone, it becomes real. At the moment it feels like my secret and I just don't know what to do.
I'm considering trying to get in touch with my mum's doctor and asking what exactly she has said to my mum, but I can't see her talking to me due to the patient/doctor confidentiality thing.
I know my mum had a visit from a speech therapist last year but she only ever went to see my mum that one time. I'm trying to get my mum to get the doctor to send the speech therapist again but my mum says it's silly and she "doesn't want to take money out of the NHS for no reason". She clearly doesn't know how important keeping her throat muscles as strong as possible is. How do I get this across to her without telling her of her impending future.
I'm sorry to have rattled on for so long, but as I say, I'm falling apart and just don't know what to do. I don't even know if my mum's doctor knows what she's dealing with. As far as I know, she just received a letter from the neurologist stating this condition, with no other information.
If anyone has any thoughts they could share with me I would really appreciate it.
Thanks very much.