Story about Progressive Supranuclear Palsy .

My Dad

Dec 2, 2


 My Dads story ... 

My Dad was a hard worker and worked all of his life in an Aluminium factory, John Menzies papers & books and the Railway working on the tracks.
In May 2003 after feeling ill for a couple of weeks the Doc diagnosed Glandular Fever.  My Dad was 57. Previous to this Dad had been prone to heavy nose bleeds for a few years. He also had an operation to remove ulcers around 1980 and had to receive several pints of blood. After the glandular fever his health deteriorated. He became prone to falling. Wondering off at work. Mood swings. Less interested in things ie. playing his guitar and music, playing snooker at his local club and reading, all of which he always loved. The Docs said this triggered something in his brain. 
Around 2005 this became worse he began falling more often and didn't really seem interested in anything. We also began to notice he was saying different things which meant nothing to us at which point we said he should see the Doc. He took early retirement from work after 37 years in the Railway as his health was a risk at work. Around 2007 he was diagnosed with Parkinson's and Cerebral Vascular Disease. His health continued to decline more, falling especially. He stopped playing guitar, listening to his music, reading and going out.  Generally lost interest in most things.  Voices and noise began to irritate him. This continued until he could not go out his own without falling. It seemed as though he was staring all the time as he was not blinking. It seemed as though his eyes were empty like there was nothing there.  His toes would curl up slightly which did not help his balance. His voice was becoming quieter. He began shovelling his food into his mouth, not finishing a mouthful before putting more in, he was coughing more when eating and drinking. 
Around 2010 he could not got out alone due to falling someone always had to be with him to hold on to him. He could not go up or down stairs alone. Couldn't write anymore. The falls continued to become more frequent. We got a bell for him to ring if he needed to get out of bed or wanted anything. My parents moved to a low ground flat with no stairs to allow my Dad to at least get out with help in a wheelchair or the car for a run. The house was adapted with aids to help ie. hand rails, shower seat to sit to prevent falling and a nova cup for drinking to stops coughing/choking as this limits the fluid intake. He began wearing sunglasses as bright light annoyed him. The falls continued to get worse until Dad could not move about on his own without help.  He needed help to shower. His voice was becoming a whisper and eyes and mouth were watering all the time. He was going to bed more during the day as his sleep pattern was out of sorts. Becoming slightly OCD things must always be put in the same place. The Doc said Dad was misdiagnosed he has PSP and not Parkinson's. 
Around 2013 his voice was going completely, there was some weight loss, coughing and choking more making it impossible for him to lie flat in bed. A hospital bed with rails was provided to stop falling out of bed. He still had his bell to ring if he needed anything. We use an alphabet chart to communicate.  Thumbs up for yes down for no. In 2014 his voice has gone, he can't walk, can't go to toilet on his own, is becoming more incontinent, coughing and choking more that all food is puréed, tablets are crushed and taken in juice.  
Dad was now trapped in his own body with this awful disease. His eyes look as though they are glazed and staring but not at you and he has weight loss. Through the years my Dad never complained about this horrific illness, he took it all in his stride.  The carers were coming in 3 times a day which helped his sleep pattern and also helped my Mum a little.  Dad was in hospital for the first time in 2014 after a lot of bleeding from his back passage was transferred to 24 hour nursing care permanently as my Mum was ill trying to look after him to.  He was aware of all of his family and still knew what was going on, he loved having a wee bet on the horses and football. Being taken out in the wheelchair to the park and still listening to his music with his earphones on which he loved to most.
In February Dad took a chest infection and never seemed to fully recover, in April he took pneumonia after becoming less responsive, being sick and choking on the x-apple-data-detectors://0 and sadly passed away x-apple-data-detectors://1 with his family by his side he knew we were all there with him as he could still squeeze our hands. 

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Thank you for sharing your Dad's story CJ, so sorry for your loss x

Commented 8 years ago Julia 20

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