My wife is now comotose and is expected to die within the next few hours or days having been starved of food and drink in hospital by using the NBM via SALT although the consultant in A&E fed her a yoghurt the previous night.
She was "diagnosed" with Parkinsons 13 or 14 years ago but only because she was beginning to slur her feet, but no other symptoms . Since then she has steadily declined over the years and each time we have argued that it was not Parkinsons and eventually to be told it was "Parkinsonism" and later Vascular Parkinsons. On many occasions we have tried to tell medics it had all the signs of PSP but not once has it been acknowledged or even talked about. The sad thing is that when we mention it to many nurses and carers they say they have never heard of it. Her symptoms over the years have been instant black outs and falling backwards like a felled tree weith no advance warning, difficulty in swallowing , complaining every thing she was wearing even in bed was heavy, herhands were like ice, and complained of being cold, lack of vision, deafness, general coordination, from early days her speech was affected and was impossible to communicate at all before today, as she had lost all use of her hands and arms and unable to feed herself, she could just walk a little until she went to hospital this last time, Not once in this Area of Lincolnshire has any one even muted the words PSP, or CBD. My heart is breaking with the Mis-diagnosis and simply ignoring the obvious plus I am afraid many other (being kind) instances of NHS woefulness.
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autex2000
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Oh I’m so sorry to hear all that, it’s truly dreadful for you. If it would be helpful to know what may happen over the next few days, I have just recently documented on here how I accompanied my mother’s dying days - you can click on my name to find my other posts. Completely understand if that’s the last thing you need now - we’re all different.
My mother had agreed to brain donation for research and part of that process is that they may find a diagnosis by examining the brain after death. If you don’t think your wife would have objected to donation you can arrange this even if she hadn’t signed the forms herself. You can find out more here ucl.ac.uk/ion/research/rese.... Their research will help to improve diagnosis in the future and improve knowledge so that more people know about these diseases. The staff I spoke with were really lovely and helpful. Again I completely understand if you wouldn’t want to do that, and I apologise if any of this is even more distressing for you.
so sorry to read what you are going through. My father died of frailty from PSP and I was shocked 4 years ago that not many people had heard of PSP. I pray your wife passes peacefully.
This is such a difficult time for you. My heart goes out to you. Have you family nearby who can support you ? I'm sorry to say that this is not the first time that criticism of the NHS in Lincolnshire has been voiced. A dear friend has just moved from Lincs as she said they are woefully ignorant in those things that she is affected with - diabetes and now dementia. Not surprising then that they've not heard of PSP or CBD.
Be very strong and be at your wife's side for as long as you can, as I'm sure you will.
Our mum is in Essex and they have been very good so far - so maybe it's just luck of the draw where you are located. It shouldn't be that way though, of course. Our mum has also agreed to donate her brain for research so hopefully more will become known in time. That doesn't really help you though, but just to see a bigger picture.
My prayers are for you and your wife. It saddens me to hear all the troubles you've both experienced because of little to no understanding of PSP. Unfortunately, it's a repetitious story to this day. Educating and advocating are key to bringing about more PSP-CBD awareness. Forgive me for asking, have you made any plans for brain donation? Pathology of a donated brain will confirm a PSP-CBD diagnosis. Once again, my prayers are with you and your wife.
Dear Autex2000, I really feel your grief. I'm not sure the following will help you much but i do hope it does.
These deseases, PSP and CBD, as you know, don't have any real cure... all we can do is treat the symptoms i.e. treat what we see.
Also, PSP and CBD are very rare diseases approx 6 persons every 100'000 persons. Its no one fault it is rare but rare means it's normal not to know about it. It it normal that PSP and CDB are first diagnosed as possible parkinsons and then as symptoms advance define it as a parkinsonism and only later PSP or one of the others, and only later which PSP, as there are different PSP types.
To make it more unfair or complicated the very few patients that do have PSP have evolved in a very different way. My wife had PSP and passed away recently, but her symptoms had nothing in common with most of the other PSP, specially on early stages, they only really resemble more and not always at later stages.
When my wife was in hospital due to pneumonia (due to aspiration of food) in her last days, it was of no help to the medical team what neurologicall disease she had...
The real responsable is fate... it's not fair but it is fate. One day, if we all help research, we will know more on how to diagnose earlier and hopefully also find a cure. Meanwhyle, the best we can do, and that is what I did with my wife is hang on to the Love we shared to each other and that remains behond death. I didn't let her premature departure prevail on all the love we shared toghether (and she was only 52...)
Yes medical ignorance is shocking. We think my husband's illness was MSA but he shared many of your partner's symptoms. He died last July. We donated his brain to Manchester brain bank and are still waiting for a preliminary report. TheGP attached to the nursing home where he sadly had to spend his final months never visited. Her weekly wardround in the home was by video call - the deputy nurse manager held the camera in front of Alan and the doctor asked How are you Alan even though Alan couldnt speak. We only discovered this slowly. I did eventually get to speak to the doctor and said I would send her the MSA guide for medical professionals. Who knows whether she read it. The surgery is one of a group run by Modality - has anyone else had experience of this organisation?
I am so sorry about the atrocious pain and suffering your wife and you had to endure for so many years.
It is scandalous that she was not properly diagnosed earlier.
I live in new york city and was very close for years to someone who got this illness. I believe it took about one year before they made the proper diagnosis in Johns Hopkins hospital. They could not tell in New York.
I was in a professional relationship with this person but very emotionally close. Not being a family member, I have no idea how they are feeling and it is terrible.
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