hello, my dad has a PSP diagnosis which he received 18 months ago. We suspect he had psp for about 2 years before this at least. My dad fell about 2 weeks ago for the first time. He didn’t hurt himself, however since then his health has massively declined and he fell again Saturday whilst standing at the toilet.
I contacted the consultant at Walton neuro 2 weeks ago as I am so worried about his sudden decline and was advised he was referred to our local hospital under geriatric care a year ago. They never received the referral so I have been chasing this up. However whilst all this is up in the air my dad looks very unwell. He is sleeping all day every day he moves from the bed to the sofa just about. He is eating small amounts but appears very confused suddenly.
I am looking for any advice about what care we should be receiving from nhs for dad. Dad went to the hospital after his fall, had bloods done and was discharged. Our local GP has said he doesn’t know how to help dad as he has no experience of psp but prescribed tramadol on Friday as his severe pain continues to affect him. It’s really hard to sit back and see him in so much pain daily and also seeing him suddenly depreciate so rapidly and feeling hopeless with no where to turn.
we have occupational health coming back out today to look at further adaptions in the home to help him.
any advice would be helpful. I feel very lost
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Betty3985
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Hi, There are a couple of things that come to mind from my experience with my wife.First I would ask that bloods and urine samples be taken to check for infection.
Also, I found that any form of trauma can cause PSP symptoms to advance creating a decline like you describe; it could be the fall itself and subsequent pain or the continuing pain he has. Once the cause has been rectified then the symptoms can slowly retreat, although not completely.
Thank you my dad had blood tests and a urine test 2 weeks ago when we took him to hospital after his first fall. All came back negative. I am pushing for an appointment with the consultant aswell. It just seems a really shocking and rapid decline suddenly and that’s the bit I can’t understand.
Even fighting off an infection could lead to a noticeable decline (partly reversible). So could any over-exertion, sleeping issues, constipation, dehydration etc and any trauma or pain as Zerachiel mentions.
The first fall sounds inevitable at this stage - the second one "to be expected" and perhaps the fear of falling is really affecting him. I agree you should push for a medical follow up in case there is something else going on.
Only once that has been ruled out, you may need to consider that PSP has progressed and this is the new baseline.
It's hard days ahead - no sugar coating it.
The GP should perhaps consider the "Gold Standard Framework" to ensure your dad can access any necessary appointments or home visits if needed. If there is a Parkinson's clinic or nurse in the area, they can be very helpful even if they are unlikely to have extensive PSP experience.
Hopefully the GP can consult with a specialist when it comes to medication. There are some commonly prescribed medications that severely affects PSP patients e.g. leading to a complete lack of energy. CurePSP have published a report ("Summary Article") for healthcare professionals; I also like to recommend an article written by James Rowe / Timothy Rittman that outlines things that the GP could benefit from knowing about PSP.
That’s a great article by Tim Ritman. We are lucky to have him as mum’s consultant at addenbrookes. Basically, push for all the help you can get and keep pushing. We have the SALT team, district nurses, nutritionist (who is useless), palliative care, live-in and pop-in care so we are very lucky. It’s taken a lot of work by my sister and I to get that but it’s worth it. Having a close relative with the disease takes over your life and it can be all-consuming so you have to look after yourself and make sure you are still living your own life too. It is a slow and long decline with psp so we are trying to enjoy these years and have time to do our own thing as it would be easy to build everything around the person with psp.
I agree with Foxy25, please contact the PSP Association's Helpline and ask to speak to the Care Navigator for your area. She is intouch with all the Atypical Clinics and Multidiciplinary Units so better able to advise. Atypical clinics etc have greater powers of referral than GPs. This is a hard road you are on, as I have travelled with my wife (PSP) and need significant support. All my very best wishes 🙏
The neurologist should have made some referrals to a specialist Parkinsons nurse and physio really. The nurse can advise on many things and also refer to their people if needed. My mums in the same situation but went to intermediate care following a stay in hospital. She was diagnosed in February this year. We have decided to move her to a care home as she can no longer manage at home following their advise. Unfortunately you will have to contact people yourself all the time as no one really speaks to each other. I have drafter a letter to her go also asking to chase up referrals to urology and Parkinson’s physio etc and to look at advanced care planning etc but have been told to reach out to charities as they offer better support such as Parkinson’s uk or our local hospice who have been great and more help than any one else.
I would recommend he is referred to social services as they can also pull everything together
Your go should do this I think or contact them yourself x
Good look. I feel your frustration x it’s hard work but just keep being persistent with everyone and pestering people as it’s the only way to get any help xxx
So sorry that your on this journey with your dad. In my experience with my mum, it was the falls that seemed to bring on so many other symptoms and each time a rapid decline happened.
I got support through Knowsley Council as I called adult social services and told them she was a danger to herself as she was meant to live downstairs due to the fall risk but took no notice.
After months of muddling through I snapped and told them I would be leaving her at A&E if I didn't get support.
Tbh it was only after this meltdown they got carers ( another story) but 4 a day meant she got to spend another 18 months at home until finally she went into a care home .
Pain wise she was on an anti depressant to cope with the pain.
The Walton specialist nurses were nice if you're in Liverpool & really unless you make a real fuss I foumd they leave you to get on with it.
The Walton nurses have a telephone line and are Parkinson nurses but deal with PsP
hi l have been assisted and helped by my local nhs neuro community team , they have physio, speech therapy, rehabilitation. Also they provide specialised equipment and assess his needs etc .
I should try to google your local community nhs foundation trust or the doctors surgery for a contact number.
Also if you contact the PSP association they will send you information pamphlets describing the condition and expectations for your GP, They also advise asking your health centre, GP practice to assign you a designated doctor.
Hope this helpful.
I know it’s difficult and an awful disease and he will have his down days , try to keep him motivated, out and about with friends, social activities etc Stay positive.
I certainly agree with all the advice that has been suggested, but I would be pushing for your dad to see his neurologist, and if available in your area a referral to the specialist Parkinson’s nurse, who like in my area are part of the neuro team with experience of PSP but are also able to facilitate referrals to other professionals that will support your dad on his PSP journey. They also saw my husband in clinic between neurologist appointments and were available via a helpline. I’m so sorry there’s no easy way to say this as your dad’s journey will not become easier so it is better to have referrals in place even if they are not required at this moment, e.g, Physio, speech therapist, OT, dietician, continence service, the falls team.
My husband’s GP also admitted she had no prior experience of PSP but I think over 2 years gained that knowledge and became an invaluable support. In the same way you will probably find that you will help to educate many of the professionals your dad comes in contact with about PSP, - so it’s always good to have some info from PSPA to hand.
Please also take care of yourself and if you are the main carer you are entitled to a carers assessment.
So sorry for what you are going through. I experience the same trying to help my Dad. I think the most important thing is having someone with him at all times to assist to make sure he doesn't fall and b careful about meds that increase fall risk. Give meds at night to help him sleep but ones that wear off the fastest in the morning like trazedone so it will not contribute as much to falls, slowed coordination/brain, etc, according to our PSP specialist/neurologist. Pain meds are good as long as they don't sedate during the day and increase fall risk.
Dear Betty…. God bless you for helping your dad. My sister died from PSP this last Christmas Day . She also had been diagnosed @ 18 months previous. We also suspect she had it several years before diagnosis.. You know that it will progress no matter your best efforts to help him stabilize. As a ‘balance, movement, speech, and swallowing’ disorder all these will get worse. I can suggest: seek a long term care facility; they will be able to monitor him 24/7 for falls and trolling out of bed etc. and take care of his daily needs if showering and feeding. It will be extremely difficult to help him at home as st some point he will not be able to move his limbs v well and will need assistance transferring to a wheel chair and to meet his needs. A speech therapist can assess his swallowing which will get worse and he will need a special diet to be able to eat. Pain assessment and medication can be dealt with at the facility. This can provide you with the time to visit with your dad rather than be trying to take care of all his physical needs. The medical staff at the facilities are trained in handling these cases with their physical and eating needs even though PSP is v rare. It is a cruel and relentless disease. Talk to your dad about what is going on. Pray with him. The long term care help you can get will be a God send as the disease worsens. May God bless you and your family.
I completely empathise with your feelings of being lost and not knowing where to turn for help.
Everyone has said it but it’s true. With an older person, sudden confusion and lethargy is very often the result a urine infection or constipation. I appreciate that everything was checked out 2 weeks ago but could it be that your Dad hasn’t been drinking or moving much since his fall and consequently developed an infection/constipation? Perhaps you could take a urine sample to the surgery and ask that it be tested?
I’m surprised that the neurologist referred your Dad to geriatrics when he has a neurological condition. Would your GP know who is the PSP lead in your area and refer to him? Either way I would approach your GP, explain the situation and ask him to help with an urgent referral to an appropriate person.
Finally, may I pass on a piece of advice that I read on this forum and wish I’d followed from the beginning. Have a notebook where you record the names and contact numbers of all the professionals you telephone and who visit. It can become quite overwhelming and it’s useful to have a note of their details if you want to make contact at a later date.
I hope you get help soon. Looking after someone you love with PSP is a lonely place to be.
Hello Betty, so sorry about ur situation. I am male 82, PSP diag 7 yrs ago, and mobility decline etc. Ive had only a couple of falls, and yes, incidents, illness, etc seem to knock me about, with recovery never quite recovering.I am on Med-veg diet, supplements, targeted exercise, and 'keeping on living and laughter. PSP = P lease Stay Positive. There are diff types of PSP, some develop slower than others.
Tell me ur personal email and I"ll email some pages of suggestion, advice and personal notes. Best wishes to you both. TimbowPSP
Lots of good advice, one service that helped me a lot with Mum until she moved into a care home was the hospice - they were great at helping me apply/refer to services quickly.
Hi Betty3985, I'm a health professional with a mum that is battling CBD, I'm not sure that Tramadol is the best analgesia to take as it can make people confused, increases the risks of falls and can cause lethargy! I would ask your GP for an alternative if he is still in pain. Good luck
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