Hello all, my first post here. I dint know where else to go, so here I am, trying to understand PSP.
My dear mum Carole was just 63 years old when she passed 30th May this year, we only got a diagnosis of PSP in July 2013, so everything is still surreal. Mum was previously diagnosed with Parkinsons in 2011.
I suppose I'm looking for answers, I cant understand how this has happened so quick to my mum. Everywhere I read about it, you live for years still. This must be the worse Illness yet it seems its very unknown within the NHS.
I am hoping to raise a lot of money to put in research for PSP something I believe could be cured. My mum went through too much, its not right. I feel so confused, I dont know what to do, anyone got any suggestions please
thanks
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my3babies
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Hi the same happened to our dad he was diagnosed with Parkinson's then PSP, like you we all had thought he had years he only lasted just under 2 years until he died last November.ihave only just returned to this site "after about 6 months off, i to am still trying to cope with his death nearly a year ago ,it's an amazing site there's always someone here to listen to you and answer your question any time night or day ,keep posting your not alone love to you and all your family x
thank you for your kind words, cant stop the tears. just reading this lovely message from you sets me off again. Although i wouldnt want anyone to feel this pain, its comforting knowing im not alone ( if that dont sound wrong) so hard aint it? seems to get harder I think. hopefully being on this site might make things easier!
My experience was similar in that the time from diagnosis to death for my wife was two years but symptoms that something was wrong had been going on for several years before that. During the early period we were sent by GPs up numerous blind alleys and had various tests performed, all to no avail. During one orthoptics visit I actually asked if it could be PSP, having heard a fund raiser on the radio and noticing the symptoms described matched those of my wife. I was told no, largely on the basis that my wife was able to smile!!! Such was the level of knowledge with this particular consultant. Less than six months later CBD was suggested and three months after that PSP was the diagnosis, subsequently confirmed by postmortem examination.
I have often wondered if my care wasn't as good as it should have been as many on this site and the neurologist indicated 7 to 10 years as a likely time span. Margaret received no medication and only had two visits from the GP, the second to sign the death certificate.
Our local social and volunteer services were excellent but to a large degree the local NHS was woefully ill informed about PSP. In regard to the period between diagnosis and death I believe the wide variation to be due partly to late diagnosis and part due to a variation in the speed of progression between patients.
The PSPA are trying to raise awareness of the condition within the general medical profession and I hope they succeed. Most of all I hope that a definitive test is developed to identify the onset of the disease at an early stage and avoid the current levels of misdiagnosis.
I don't know if this helps at all, but be assured you are not alone in your confusion and frustration.
Thank you for writing back. please do not wonder if your care was good enough, I'm sure it was the best you could have possibly done. Its so bad that drs rule out possibilities because of one or two things that dont match the criteria. My mum was only finally diagnosed PSP when we see her specialist and he noticed her stare. He said " this is not Parkinsons its PSP because of your eyes" I had never heard of this so replied to him "my mum will get better then" he told us " one would hope". My mum could still smile, infact i am looking at a picture of her now, took 13 days before she passed and shes still smiling. Its ridiculous for a Dr to expect every patient to show every same symptom.
I left that appointment excited, took my mum to the rest of my siblings explained she hasnt got parkinsons its PSP, its ok. Until we researched it & found out its worse than parkinsons.
I look back and try to think how long my mum had it for before we knew, but i cant work it out. It was her 60th birthday 4 years ago and she seemed in great health really, minus her bad hip but she partied the night away like myself! She had a bad back and hip for a few years but that was it!
I think its terrible that your wife was not given any medication, my mum was on meds for parkinsons and once they changed diagnoisis to PSP some meds had to stop straight away and my mum changed alot from that point!
What a horrible illness our loved ones went through, lets hope a definitive test come too light very soon.
thank you jerry, your words help.
best wishes michelle
Hello All,
Well our experience was also similar in that we did not get even a suggestion of PSP until 9 months before my Dad died and that was made by a private movement disorder consultant ( by photographs), to whom I was not able to actually take my Dad in person because the GP would not allow a second opinion! It was later confirmed by brain biopsy. Are you aware of this iced water dousing craze which is going on at the moment for Motor Neuron Disease or ALS (in America) in order to raise funds? Well, it is my opinion that research into any of these degenerative neurological disorders will be helped by research into ALS because they are all rather similar regarding the involvement of malfunction of the brain cells and neurons. Once they have found out exactly how the brain and nerve cell transmit their messages (ie work), then they will be able to discover the specific malfunctions for each type of disease. Then they may be able to do blood tests or spinal fluid tests to find out which proteins and chemicals are present or not at the site of particular message transmission, and in what quantities etc etc. That's what I think! I may be completely wrong! The really nasty stage of PSP, it seems to me, does not show itself until close to the end. There are years previous to this where 'things are not right' but some people are so clever at hiding their problems from their loved ones. My Father was rather good at this, poor thing! I did eventually get him to see that consultant who had very kindly looked at our photographs, and he confirmed the diagnosis as far as he could without the biopsy. Dad died five months later. It is so important to get a diagnosis as then one can understand what is going on and appropriate care and consideration be given. My father was just left to get on with it, being treated with Levadopa for years (and he did not have Parkinson's) ,but developed awful spasms and contractions as a result of long term Levadopa use. I ended up being 'in the dog house' with all medics, and at one point banned from seeing him, as I kept saying that he was not being treated properly, but at that time I had never heard of such a disease as PSP; (a bit like what would have happened to the parents of Ashya King had his parents not removed him from the country and away from NHS influence). My Dad was too heavy for me to scoop up and wheel out in a pram to get help from somewhere else! I too, wonder how we can get proper recognition that PSP exists, I think that representations have been made to Parliament, but that is as far as the message went. All we hear on the news is Alzheimer's, all the time, as if no other form of neurological disease exists. I think, at the 'coal face' so to speak, the doctors and consultants do not want to consider even, the possibility of PSP because they do not know what to do with it and do not like to admit so. Sadly, there is nothing that can be given as a cure, but it surely can be made an easier 'ride' and carers given more support.
Even on his death bed, in hospital, a few weeks and days before he died, the consultants were discounting the possibility of PSP and it does not appear on his death certificate. I really must get that altered for the purpose of accurate data recording.
Hi I know exactly how you feel my mum diagnosed in Nov last year and died 3rd of June cruel disease , mum's donations we requested for psp only as we wanted to make people aware of the disease which added up to £1200 the pspa were delighted , my brother and daughter doing a marathon in Cardiff to raise more. Very frustrating I found as doctors nurses never heard of it I live in a small town called Builth wells in mid wales and I found my self telling them what to expect as I was on this sight everyday finding more and more info on the cruel disease . Me and my three brothers looked after my mum took it in turns to stay with her , I cry every day my mum was lovely and like your mum and everyone who is going on the same journey their loved ones don't deserve to die this way, the only good thing was I was able to tell mum how much I loved her and I must of told her a million times of the months. Thinking of you xx
I live in despair of the medical profession! All our stories are so similar, from all around the world.
S had a silent stroke (part of PSP? don't know) about four years ago. Being going down hill since. Nothing was ever done about his symptoms. He survived the stroke, why should they do anything else!!! We went to doctors fairly regularly with "silly" problems. It wasn't until i took him and said I thought he had had another stroke, due to having a day of loads of falls. Different doctor, immediately suspected Parkinson's. Saw a consultant a few weeks later (private!) and although he didn't tell us, wrote to a letter saying he thought it was PSP. He must have taken one look and suspected it, as most of his ob's involved S's eyes! Not one person has EVER sat us down and talked about PSP. The NHS consultant told us to google it, when they finally confirmed he had it. Our last visit to this guy, he asked ME, if I thought it was PSP,!!! Thanks to my wonderful education by you lot, I was able to confirm, that yes S had PSP!
I know S has had it for at least twenty years, now I can recognise the symptoms! I didn't know S before that, so who knows how long he has had! I'd love to ask his ex wife, but I'm afraid she might find that some of their problems were PSP related, wouldn't want to inflict that guilt on her.
I think we all have to accept that this is a rare disease and nobody cares, it's not a vote winner in any country, so why bother!!!!!
May the Lord bless you, ease your pain, give you peace and discernment to assist others with this disease. My wife has cbd. No cure. Little known. One day at a time.
I do not believe in God, and now, after reading about what is happening to our loved ones, on this site, you may understand one of the many reasons why. Please don't ever send me, via Him, any Godly blessings, they are about as useful as these ignorant doctors we come across and they make my blood boil! What I wanted was for my father's pain to be eased, where was your benevolent God then?
I am so sorry for your loss of your mother. I am starting to get confused, I keep reading post about people who have lost a loved one from PSP. My Aunt was diagnosed with Parknsons 7 years ago we just recently found out that it was PSP I have researched every angle of PSP and from what I have been told by many Docs. (the ones that know about PSP) its not the dieses that kills but form asperation infection of the lungs.
not from PSP its self if you do not mind me asking how did your mom pass fromPSP. We are going to UCSF a rearch for PSP with in the month. My Aunt Bev has signed up for every test posible, there will be a team of Doctors studiny her and she will be testing a new drug that has not been tried on humans , (cross your fingers) I would like to keep in touch with you if that is ok and again I am so sorry about your mother.
so sorry for your loss, Michelle. 63 is so young still. My dad (now 82) was diagnosed with epilepsy 3 years ago even though they didn't think that was what it really was. He had some kind of fit in his sleep. Then he started have problems walking, and started falling, so it became Parkinson's until they properly diagnosed him in Nov 2012 with PSP. I thought it was maybe that because of his age, they just stick any old-age diagnosis on it, but your mum was so much younger, so I can only think that nobody knows enough about PSP. I hope you find comfort in your family and friends, and hopefully your friends here on the forum. xxx
My mum died from PSP in march last year - she was 68. I haven't been back to this site much since as I find it too difficult, but your post resonated with me. I still try to make sense of it all. It is such a cruel illness as it takes so much from us and them before they pass away. The hardest thing for me was not being able to communicate and know how to help her or what she was thinking/feeling.
It sounds like you need somewhere to channel your grief. I think sometimes it has to just be ok to sit with it but my husband and I are going to do the Santa run to raise money for PSP in December this year and that is helping a little bit to focus my feelings into something positive.
PSP is not a one-size-fits-all disease. There are many symptoms associated with PSP but not every patient gets every symptom. They may get the symptom but not as bad as others. There are no certainties in PSP other than it is progressive with a terrible ending. Time? None of us can know how many days we have left on this earth. For that reason trying to figure out what stage a PSP patient is in is futile and non-productive, IMHO. Jimbo
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