So my mum who is 83 was diagnosed by the Nuerologist yesterday with PSP. Mum was admitted 5 weeks ago to hospital with a chest infection which turned out to be Pneumonia. During her stay in hospital and contracting 2 hospital acquired infections (an infection in her right lung and e coli in her urine after a catheter was fitted) concerns were raised re her swallowing n so an NG tube was used to feed. After repeatedly pulling the tube out we have decided to risk feed. Mum is now on pureed food and is responding well to meds. We have a discharge and continued care meeting at the hospital today with the medical team and social worker.
So going back to PSP. Mum started having falls around 2009, at the time we thought she was just being clumsy. About 3 years ago we noticed her left arm was limp n she was using it less n less n that her speech was slower. Her GP was concerned enough thinking it was a stroke she was sent off to a falls clinic who then referred her to a memory clinic n Nuerologist. Mum was diagnosed with Vascular Dementia. Over the past 3 years her health has deteriorated rapidly. First her mobility, causing her to be wheelchair bound. She lost the sight in her left eye and had serious issues with bright lights often having to wear sunglasses inside. Mood swings were apparent, crying and laughing for no reason. Repeated tapping on her leg with her right hand. Forming habits. This last year has been the worst as mum became incontinent. She repeatedly had the urge to go and during the night was the worst. Dad was probably putting her on the commode 5times n she might use it once!!
Whilst mum has been in hospital she has had a number of tests carried out as the specialists realised there was more to her deterioration. We were concerned mum may have motor nuerone. Yesterday I met with one of the team who explained PSP and showed me scans of mums brain. She definitely has dementia. On top of that they believe she has PSP and it appears they may finally have positively diagnosed looking at mums symptoms. (Its almost like she's an advert for PSP ticking most of the symptoms)
The doc explained that PSP is generally misdiagnosed due to similiarities with other illnesses ie parkinsons. That its not till a number of symptoms show themselves that its properly diagnosed.
Mum is being trialed with Sinemet and they have just upped her dosage.
Mum can no longer speak apart from to say yes and no which we think she gets mixed up at times. She knows who we all are and knows wots going on as I explain everything to her.
Dad who is 80 has been her carer until now with our familys help. But we now have to make the decision on continued care.
Why isnt this illness advertised, I know our situation would not have been any different and mum would have deteriorated in the same way. But if we had known earlier it would have been easier to understand.
The Nuerologist wrote in mums notes 6 years life expectancy...which I have seen on other sites....my poor mum
I know this is a very long blog but I needed to get things off my chest and I think Im relieved to know and also in shock too. Thanks to anyone who reads and responds.
Can anyone tell me what to expect now?