Hi everyone
I’m completely broken,Im just home from visiting my poor mum in a psychiatric ward, I’m 33 mum is 61 she’s registered blind, she lost her sight about 9 years ago through diabetes. Mum lived a pretty independent life after she lost her sight only barrier she had was going out on her own, she wouldn’t use a white cane cause she was too proud! About a year ago her behaviour changed and she couldn’t navigate her way around the house, she couldn’t find the stairs, toilet and she would get lost in rooms and couldn’t work out how to get out, this would cause massive anxiety attacks and eventually my dad had to stop work to look after her as he kept having to come home to calm her down. Fast forward to august 2019 And after many gp visits and loads of meltdowns mum gets a ct scan, she got that as she can’t fully complete the dementia memory test thing as she can’t see. We waited 7 weeks for the result of the ct to come back and in that time my mum ended up sectioned as her behaviour just became unmanageable I thought my dad was going to have a breakdown. When the ct scan eventually came back it showed a clinical picture of normal pressure hydrocephalus, I was told by the consultant that mum would get a lumber puncture then possibly a shunt fitted and if all was successful she would go back to her normal self! She got the lumber puncture about 4 weeks ago and considering how she had been I was surprised she tolerated it but she did! The neurologist had a chat with my dad during a consultation and said he was concerned about a couple of things and thought maybe there was something else going on so he wanted to do further testings, he said he believed the lumber puncture had no immediate improvement to her mobility so by that I assumed he wasn’t going to invest anymore time on that! I think there was an improvement though, especially in her walking and urinary incontinence which was really bad before the lumber puncture but had pretty much disappeared a couple of days after it. So fast forward again to today and we were due to get a dat scan, mum had a really bad morning she was very disoriented, upset and angry with everyone so I knew things weren’t going to go smoothly! She was fine getting the injection to put the dye in but after the 3 hour wait she was really tired and she couldn’t tolerate the scan so they had to stop after only 5 mins! She was meant to lie down for 30mins! My question to you guys is has anyone had the diagnosis of NPH first and then it’s been changed to dementia with Lewy body? (That is what they were looking for in the dat scan) can they diagnose that if she can’t tolerate the scan? This has been a complete rollercoaster for my family and there just doesn’t seem to be any end to it!
Sorry for the long post and if it’s a bit all over the place but it’s a really long story!
I’m completely broken,Im just home from visiting my poor mum in a psychiatric ward, I’m 33 mum is 61 she’s registered blind, she lost her sight about 9 years ago through diabetes. Mum lived a pretty independent life after she lost her sight only barrier she had was going out on her own, she wouldn’t use a white cane cause she was too proud! About a year ago her behaviour changed and she couldn’t navigate her way around the house, she couldn’t find the stairs, toilet and she would get lost in rooms and couldn’t work out how to get out, this would cause massive anxiety attacks and eventually my dad had to stop work to look after her as he kept having to come home to calm her down. Fast forward to august 2019 And after many gp visits and loads of meltdowns mum gets a ct scan, she got that as she can’t fully complete the dementia memory test thing as she can’t see. We waited 7 weeks for the result of the ct to come back and in that time my mum ended up sectioned as her behaviour just became unmanageable I thought my dad was going to have a breakdown. When the ct scan eventually came back it showed a clinical picture of normal pressure hydrocephalus, I was told by the consultant that mum would get a lumber puncture then possibly a shunt fitted and if all was successful she would go back to her normal self! She got the lumber puncture about 4 weeks ago and considering how she had been I was surprised she tolerated it but she did! The neurologist had a chat with my dad during a consultation and said he was concerned about a couple of things and thought maybe there was something else going on so he wanted to do further testings, he said he believed the lumber puncture had no immediate improvement to her mobility so by that I assumed he wasn’t going to invest anymore time on that! I think there was an improvement though, especially in her walking and urinary incontinence which was really bad before the lumber puncture but had pretty much disappeared a couple of days after it. So fast forward again to today and we were due to get a dat scan, mum had a really bad morning she was very disoriented, upset and angry with everyone so I knew things weren’t going to go smoothly! She was fine getting the injection to put the dye in but after the 3 hour wait she was really tired and she couldn’t tolerate the scan so they had to stop after only 5 mins! She was meant to lie down for 30mins! My question to you guys is has anyone had the diagnosis of NPH first and then it’s been changed to dementia with Lewy body? (That is what they were looking for in the dat scan) can they diagnose that if she can’t tolerate the scan? This has been a complete rollercoaster for my family and there just doesn’t seem to be any end to it!
Sorry for the long post and if it’s a bit all over the place but it’s a really long story!
