My mum has stayed in the nursing home after a temporary placement in October. She dislocated her thumb and wasn’t able to use her Walker and live alone. The home have been great, they had had another resident with PSP and so had a lot of knowledge already. However, I had an email from the manager today asking me which neurology clinic was taking care of her. It has made me realise that since her diagnosis 14 months ago at an NHS hospital we have had no further correspondence. Is this right? Should she be having further intervention? And if so, what would that intervention be? She has a physio, OT, SALT, Falls clinic, etc but nothing neurological. It seems so strange that someone can get diagnosed with something so awful and then is just left to get on with it!
Thank you,
Helen
Written by
Hdee
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A lot of people stop going to regular follow ups with neurologists just because it gets harder and harder to physically transport from residence to the doctor’s office. And it is the sad truth that as the symptoms progress, there’s less and less the doctor could help with. It would be nice if you can find a good doctor who does virtual visit, but I definitely recommending seeing the doctor in person the first one or two times so he has a better picture.
During our virtual monthly follow up, mom’s doctor is basically asking us is there anything we think he can help with, instead of trying to tell us what to do.
You can also find a good general family doctor instead of a neurologist if that helps, because most of the time all you care is making the patient comfortable, have them less agitated, sleep better, or ease their pain, those things a family doctor can easily handle.
Yes Poppypolo I have been on my own with it for a long time nobody seems to understand him or wants to it just goes from one thing to another Unfortunately it just got too much for me mentally and physically I was not coping and I’m not afraid to say it so I had to put my poor husband in a nursing home but I found a good one close by and I can bring him home as much as I like but only allowed 52 days a year sleepover so as long as I take him back he could come home every day if I wanted him to
Before this happened in worked as a carer but then I had to give up my job to look after my husband I have looked after him fully for five and a half years he was diagnosed on 2014 With CBD what the difference all the same if you ask my but I’m sure he’s had PSP / CBD
for a lot longer it’s the worst thing I have ever seen in my whole life
And I will never go back to work as a carer again ! !
God bless you all I have reached the end of my patience with it all we’ve had the falls the surgeries the moods the depression swallowing problems the loss of voice the leaning over the immobility so now it’s time for someone else to look after him and I’ll just be the wife again for as long as he is around
A man who hardly ever had a day off work and gets to retire and then this !
shame we can’t all
Get together isn’t it we are the only ones that understand 🥰
Hi, thanks for your reply it means a lot to have a reply, yes I am finding it hard as you have. I don’t blame you for having a nursing home look after your husband there is only so much to take with this terrible illness you just lose the husband you had.Mike has had p.s.p now since 2016 and like you it is a fight to get support, I am in Essex and there seems a lot difference between each district with help a friend who is a nurse can not believe the treatment that has not been given from constipation to pressure sores.
Hi Valerie where about a in Essex we lived in Essex before coming to Australia Luckily we have a bit of government support but it’s still not enough for the condition they have so much ignorance everywhere I go I have to print something out on PSP for them
We are in Walton on the Naze, I belong to the Parkinson group but people think it is Parkinson the shaking just does not happen with p.sp.Our system here is see what boxes you tick and how much you have to pay.
I loved Walton on the Naze we lived in Rayleigh west cliff and Leigh on sea Why do you have to pay ? that’s awful and no it’s nothing like Parkinson’s is it no shaking Parkinson would not be as bad as this did you know Dudley Moore had PSP ?
I don’t know if you remember Peter Cook and Dudley Moore
you have all my sympathy. problems are similar, slow steady progression, sinemet-sinemet and sinemet; useless. Neurologist once every 6 months just to record regression and more sinemet. a hard-working woman, managing alone a home of 4. parents killed in an attack, and then this f..stupid hillnessPD?CBD? neurologists do their best, but no help. Now i am retired, good banking, daughters well married, grandchilds, and now this. doing my best to support her, but what in 5-10 years?Ibis rediebis non in bello morieris. put the comma where you want. good luck.
I agree we seem to be on our own with this p.s.p. It is so hard to gain access to any help, tablets come easy but it is the support of people who no about p.s.p doctors seem the only answer as no one what’s to sit in a hospital waiting room for five minutes consultation.
We live in Oldham and have had support from the Neuro/rehab team since John was diagnosed 2 years ago. They have been fantastic. He is now in a home after suffering several fractures but they still keep in contact. They support me as well as John
So glad to hear this, it's all a bit of a lottery. I couldn't even get thickening powder for my mums drinks last week. Got it now but it was really difficult.I love that your being so supported, as it should be.
We had regular appointments with our neurologist and Parkinson's nurse until such time my husbsnd was passed onto the Palliative care team about three months before he died. If it was not possible to get to appointments they were available at the end of the phone. However the most support came from our GP, District Nurses and dedicated OT who were available by phone or in person. I couldn't fault them.Hope this helps
Hi it is quite normal not to see a neurologist for follow up, no point really. We were lucky as rog was under the umbrella care of our local hospice for over two years and was seen there as an out pt, not to instigate treatments just to monitor his needs.
Hi Mum used to seen by her Neurologist about every 9-12 months but that was preCovid. However I found the appointments little use, very stressful & quite upsetting for Mum, who used to get her hopes up that they could do something, which of course they couldn't. They were good for referrals but that was about it. We stopped going, telling the clinic it was too much for Mum & then the Neurologist got in touch a couple of months later & suggested a telephone appointment - this worked so much better. I could tell him how Mum had deteriorated, he made sure we were seeing the right people to support her & none of the stress for Mum. So I would suggest you get in tough with your Neurologist but say you want to talk to him on the phone or Zoom /What's App & then they could even see your Mum as well. I think people are more open to this now especially in the current situation.As an aside my Mum spent 6 months in a Nursing home due to a hospital acquired fractured arm, which meant she couldn't use her walker, like your Mum. With lots of determination & physio Mum got back to her flat & spent her last 2 years back at home, where she peacefully passed away.
We saw our neurology once just before covid hit and that was the initial PSP diagnosis. Then 6 months later a call to confirm again the diagnosis. Since then we have had no communication. As others have said it’s like no treatment no cure so they don’t bother.
We see my dads neurologist once a year but as said already, there’s not a lot that can be offered, it’s more to keep monitoring and track symptoms, but often when he sees us we are referred other services so I think it’s useful to go. We also have regular contact with a neurological nurse from his team who visits us at home usually every 6 months to check in and see how dad is doing. Again although there’s not a lot to suggest she’s very empathetic, and can also refer into other services (falls clinic, SALT, palliative, hospice etc.) so with having a touch point with the neuro team for navigating the system.
So sorry to hear about your mum. If you look on the NHS website it tells you who should be involved and one of those is a specialist nurse from neurology . This wasnt done for my mum either and I found out after arguing for literally months on end that her care was ad hoc and nobody was coordinating it.
Call the GP mention all those missing from her current care package especially that nurse.
I have an assment now next week with an Intergrated Care Team manager. All done over the phone and video conferencing. She was previously signed off last year without our knowledge which led to nobody taking ownership of her care package.
I could write a book of failures but I won't bore you with the details.
Just read the website bullet points back to them and ask who is in charge of care package. I would confirm all names and agreed action via email as when there are failings this seems the only way to remedy the situation. Good luck, its a job in itself keeping up with the professionals involved.
I know as time progresses some may no longer be of use but at the very least every attempt should be made to ensure your mum have everything she needs. I'm glad the home sound so good.
After seven years in, I now see my MSD (by phone) once a year. It's more or less a follow up - checking on pain meds, mental wellness, that sort of thing. As some have said already, there's not more they can do.
Hi Hdee . I was diagnosed with CBD 5 years ago My GP who was amazing sent me for every test going until I got a result but he retired shortly afterwards . We joke he did a runner cus he couldn’t help with this problem . I was lucky to have been sent to a neurologist and I got my hopes built up when he told me he was going to see me every 4 months to see me through this . After that it all went down hill. I’m lucky ,even before covid hit, if I seen him once a year and even then he only asks me how I am before rushing off “as he’s terrible busy” I use to get quite upset with his attitude but I’m so use to doctors and people’s attitude to this disease that over it. He did help me with medication tho and if I was a drug addict I’d be in my element cus he will give me anything . I’m waiting on an appointment for speech and language which my GP arranged and I’m also waiting on botox injections for my foot which the neurologist arranged but only cus I asked for that as I read daddyt mention them . I think it must depend where you live . I’m in N. Ireland ?
Yes you have to be your own advocate or have someone be your voice. They keep telling my loved one there is nothing that can be done all they can do is help manage symptoms. I have my loved going to specialized pt which is designed for Parkinson's which has alot of the same movement disorders. You can seek a movement specific doctor that can help with activities to keep her stronger for as long as she is able to do it. But neurologist have been little to no help. We've seen 6 different neurologist always left with more questions then answers. Best of luck to your mum!!
hello to everyone, is my first time here I apologise in advance for any mistakes, but I am not English.My husband was diagnosed with the disease in November 2020, after a year of trying to get an appointment with a specialist. It was a shock. although there are procedures to follow for PSP no one in the NHS does it. You are left on your own to deal with every single thing, to fight for an appointment with any therapist who doesn't even know what PSP is. I spend so much time on the computer trying to find anything that will help my husband feel a little better.
Every day we do stretching exercises, breathing exercises and also exercises to keep the facial muscles active to help with swallowing.
In addition to Parkinson's medication (Amantadine and Sinamet) I supplement with vitamin D, B1, B12, Turmeric Ginger and Cinnamon, Omega 3 and Coconut Oil. I know they are not the magic cure, but I try to keep him as fit as I can.
I realized that I can't rely on anyone, because so many doctors, nurses don't even know what PSP is. Nor do they do anything to further their knowledge.
The hardest thing is to see that instead of doing their best to help the patient and make sure that the decline is less rapid, they calculate the patient as terminally ill, even though the disease is in its early stages.
What hurts me most is knowing that every day that passes we are closer to the end and it's hard to accept it. Sometimes I lose my patience, and then feel guilty, but I'm a human being with a heart that is falling apart and a brain that is bursting.
I think it's a feeling that we all have, impotence and discouragement. Sometimes it's difficult to understand what's the spring that keeps you going.
Hi Anna, my heart goes out to you and your husband. I think we all need to sound off occasionally and where better to do it with people who understand. Stay strong.
Firstly your English is amazing ! We all feel your frustration . I’m lucky at the moment as I’m still doing ok so while I can I’m doing what I can ! My son Marc Watters is doing a 3 month weight loss challenge to raise awareness and some money for research . PSPA have been so supportive and so have our friends . I had a lovely lady private message me on face book who lives near me here in Belfast . Her mum has PSPA and she’s totally confused with the lack of support ! So at least we have found each other . I can’t imagine watching your loved one going through this . I’m glad I’m the one with it snd not my mum or husband . There are amazing people on this site who will give you fabulous support and advice .... sending you love and hugs from Belfast xx
I'm very lucky to see a movement disorder specialist 2 X per year. She most recently helped me with a type of sinemet that helps me sleep for 5- 6 hrs each night.
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It's difficult to cope with PSP
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Nursing home-short term
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Continuing care question
