Struggling

[Big_band_music]

My husband had been experiencing various problems for some years including limbs on his left side feeling strange, gradual problems with speech, falls, incontinence, slow mental processing and problems with swallowing. Despite many attempts we were unable to get an appointment with a neurologist and his GP just said it was old age. The pandemic did not help this. We finally got an appointment for an MRI and then with a Neurologist in March 2023 (approx 5-6 years after first onset of symptoms)

Just after the neurology appointment he suffered a stroke last year which affected his right side and caused his speech to further deteriorate. He spent 13 weeks in total hospital because he had been sent to the wrong hospital to begin with and it took 4 weeks to get him transferred to a hospital nearby. The first hospital disregarded what I told them and just treated the stroke, he was on a trial course of Madopar prescribed by his Neurologist and they continued this. It had a bad effect on him and he spent 3 weeks in virtually unconscious before I got them to speak to his Neurologist at the hospital near us, and she told them to reduce the dose. They attempted physio and gave up. After transfer to our local hospital He spent another 9 weeks before they eventually said he had lost all his core strength and there was nothing they could do and he should be discharged. They kept trying to get him to eat different levels of soft food unsuccessfully because his swallow is bad. He also hated the food and the result was that he lost over 4 stone. Once nurse told me it was a good thing as he was overweight before! He was too heavy but starving him was not a good way to make him lost weight especially over such a short period. As a result he never wants to go back to hospital again.

I was under a lot of pressure to have him back home. We do not have a lot of room at home so after some consideration he and I decided his care would be better handled in a nursing home and he has been there now for nearly 14 months.

He is bedbound and totally helpless, so needs complete personal care and is fed liquidised food. He can watch TV but that is all. We struggle to converse. I ask him closed questions to which he answers but the answers are not clear and consist of a 'yes' or 'no' sound. The carers in the home try hard and do their best. Some are much better than others. He is just imprisoned.

He receives funding from the NHS which helps with his fees and we applied for CHC but it was refused last year. Should we try again?

[David750]

Hi Big_band_music, this is a distressing read from you and one I fully empathise, having cared for my wife with PSP. I think you should definitely reapply for CHC funding. Please call the PSPA Helpline (pspassociation org.uk) and speak to their Health Care Navigator (HCN) for your area. The PSPA can give you advice over CHC applications. Advisable to involve a local medical professional to help you complete an application if you can. Also the PSPA can run an online course with the nursing home on caring for PSP/CBD if the care home is compliant - speak to your HCN about it. All my very best wishes

[maxandpoppy in reply to David750]

YES RE-APPLY!

[Rose1sunflower]

So sorry to read this continuing sequence of problems and frustrations! To me it’s an example of lack of knowledge of PSP in medical world and one dept not talking to another.

I think there is a time limit for re applying for CHC and I’m sure the PSPA, can advise. Is there somebody in the home who has experience of completing these forms? Are Palliative Care involved? They have been so helpful to us.

I find the monthly video group chat run by PSPA very supportive, are you in touch with this? Lots of information, especially local knowledge.

Best wishes and good luck with it.

[Big_band_music in reply to Rose1sunflower]

HiThe home made the first application so I will see what they say. They are managed by a central office but Corticobasal degeneration is completely unknown in the home, not surprising considering lack of knowledge in the NHS. Every time I mention it a glazed look comes over the staff, Managers nurses and carers alike. They adopt a sympathetic expression as if to indicate I am slightly deranged!!

I have only just discovered PSPA.

I have repeatedly asked about Palliative Care but they are not interested because he is not in pain!

[Rose1sunflower in reply to Big_band_music]

The PSPA, I believe can send information to the home and I think I read somewhere they can give training in the home, not sure if this is the case or not.

Our GP referred us to Palliative Care to help with medication but have helped with a variety of things.

Good luck with your next application

[Rose1sunflower in reply to Rose1sunflower]

Another point, if your husband is unable to communicate how do they know he is not in pain? Sorry to worry you more but it could be an argument for you? My husband actually goes quiet when he is in pain - he also has arthritis.

[Big_band_music in reply to Rose1sunflower]

He can reply to questions with noises, his No is particularly clear and Yes comes out as a ssssss!

[PineEater]

Big_band_music

Saddened to learn what you have described. It has brought tears in my eyes.

'Despite many attempts we were unable to get an appointment with a neurologist and his GP just said it was old age. '--What a shame! Should the GP not be dismissed for his/her incomplete knowledge of such an important medical subject ? Why does not he read and acquire knowledge of their own field?

Is Madopar working? If it is not, trihexylphenidyl (artane) may be tried.

Best wishes and regards to you and to your husband.

[Big_band_music in reply to PineEater]

Thankyou x He is too advanced for medication to help I think. He just has a little Madopar to control obsessive behaviour like scratching, continually picking at his bedding etc. It has helped with that.Of course he has changed GPs since he moved to the nursing home but they are only reactive to things such as pain, prescribing painkillers etc! I haven't managed to speak to his GP yet. Asked many times. xxx

[LuisRodicioRodicio]

Hi Big-band_music!

"Motts", "Martina_MP", "Wigwambob" and "Happysole" report that in some PSP patients when the patient falls never feels pain, even when cut his head and went to hospital. Sometimes this is part of the PSP progress.

Among the most persistent symptoms in PSP patients are depression and insomnia. We used palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1 suggests:

healthunlocked.com/psp/post...

“Zerachiel” Point out: “It may be worth looking into the drugs the patient is on at the moment, Amantadine for example can cause problems with sleep.

Hug, luck and courage,

Luis

[Big_band_music in reply to LuisRodicioRodicio]

Thankyou. Your points are interesting. My husband never slept well in his life and we put it down to starting off as a farmer and being used to early starts etc It never worried him He has always been a bit anxious, worrying about time keeping, phone ringing, children running about disturbing people - I know children do but this was excessive. He is only on Madopar and is bed bound and in a nursing home so very little else we can do

I hope to get some leaflets soon xxx

[Big_band_music in reply to Big_band_music]

Also he fell downstairs some years ago and virtually scalped himself needing 35 stitches - no pain . He had simultaneous knee arthroscopies, never took a pain killer and was back walking and playing golf quickly. He did have some pain before the op but never took painkillers He had the op because it was affecting his golf!

[SunriseLegend]

You know your husband better than anyone and therefore need to be involved in any CHC aplication. the first time we applied the social worker came to the house and we zoomed into a meeting with the NHS professional who was doing the assessment. Like you, we got the lower level of funding at that point. At the end of a 6 week stay in hospital my husband was assessed by the hospital team and awarded full CHC on discharge - we were not as involved that time but as they seemed confident that he would qualify I was not too concerned. He is at home with me.

I agree with what others have said - GPs and nursing homes seem to be a bit out of their comfort zone when dealing with CBD. I have a set of booklets which I obtained from PSPA with useful information for carers and patients. I show them to any new carers who look after my husband and some have said they were useful

[CJFreckles]

Firstly, contact Beacon who can give some free advice and time to help you reapply for the CHC funding. Secondly, do you feel like you can trust any of the medical team involved? If so see if that person can help get palliative or hospice care involved because you absolutely should not be having to do this on your own and the treatment you and your husband have been given is unforgivable. Pspa association are wonderful and can point you in the right direction as well. Lastly, if at any point you feel like you have the brain space, you need to raise all these issues with the local ICB because there has been a large amount of medical negligence. I appreciate that won't be top priority right now but you absolutely should not have been treated the way you have. Givinf you the biggest hug xxx

[Bergenser]

It is sad to hear how many times you and your husband have missed out on getting the right help and support. I agree with the others that you could reapply for CHC funding. My one concern would be that his condition might not be considered "unpredictable" now, the way it clearly has been previously, so you might be disappointed again.It would be great if all the different services were more aware and educated about PSP and CBD.

Virtual hugs 🫂🌻