Hi all,
I saw my Mums neurologist last week, and was given the news that she has Posterior Cortical Atrophy. She is 65, but I'm almost certain that she has been experiencing symptoms since around 2011/2012. It has been an incredibly exhaustive and emotionally charged journey to get to this point. I live 2.5 hours away and have a 3 year old and a 1 year old. My Dad died back in 2016.
What is perturbing me a great deal now - is how to tell what stage my Mum has reached. I suspect that her symptoms have progressed very rapidly.
A fortnight ago, Mum was found by her carer (at this point she was living in an independent living flat and having 2 care visits a day), having fallen over in her flat, and been unable to get back up. Nobody could ascertain when Mum fell and how long she'd been there. An ambulance was called and the paramedic was concerned that Mum was leaning very far to one side when she stood up and walked. She was brought to hospital, and friends were sure that she'd be discharged fairly quickly. However, over the days that followed Mum could not move easily between her bed and her chair. She had several falls trying to get between the two, at one point falling and banging her head quite hard. By the end of last week she was bed ridden, and unable to move, other than to lift her head slightly, or to grasp on to the sides of the bed. She is having to be shifted around with a hoist. No one has been able to say what has caused this sudden loss of mobility - whether she has had several TIAs for example. When I saw Mum she was very dizzy and frightened, and very little conversation could be had other than her repeating that she was very frightened and angry. She is having to be fed and changed. I am now told that she is awaiting a bed to become available in a nursing home, so that she can have further assessments carried out. This could take several weeks. I would then like to settle her in a permanent nursing home.
Now that we finally have a diagnosis for Mums symptoms, I feel like I would like to know how this disease progresses in the end stage, and whether Mum is going to remain in her current predicament for a long time.
I saw my Mums neurologist last week, and was given the news that she has Posterior Cortical Atrophy. She is 65, but I'm almost certain that she has been experiencing symptoms since around 2011/2012. It has been an incredibly exhaustive and emotionally charged journey to get to this point. I live 2.5 hours away and have a 3 year old and a 1 year old. My Dad died back in 2016.
What is perturbing me a great deal now - is how to tell what stage my Mum has reached. I suspect that her symptoms have progressed very rapidly.
A fortnight ago, Mum was found by her carer (at this point she was living in an independent living flat and having 2 care visits a day), having fallen over in her flat, and been unable to get back up. Nobody could ascertain when Mum fell and how long she'd been there. An ambulance was called and the paramedic was concerned that Mum was leaning very far to one side when she stood up and walked. She was brought to hospital, and friends were sure that she'd be discharged fairly quickly. However, over the days that followed Mum could not move easily between her bed and her chair. She had several falls trying to get between the two, at one point falling and banging her head quite hard. By the end of last week she was bed ridden, and unable to move, other than to lift her head slightly, or to grasp on to the sides of the bed. She is having to be shifted around with a hoist. No one has been able to say what has caused this sudden loss of mobility - whether she has had several TIAs for example. When I saw Mum she was very dizzy and frightened, and very little conversation could be had other than her repeating that she was very frightened and angry. She is having to be fed and changed. I am now told that she is awaiting a bed to become available in a nursing home, so that she can have further assessments carried out. This could take several weeks. I would then like to settle her in a permanent nursing home.
Now that we finally have a diagnosis for Mums symptoms, I feel like I would like to know how this disease progresses in the end stage, and whether Mum is going to remain in her current predicament for a long time.