Morning My FIL has PSP, each day is different, difficult and hard for his wife.
MIL is coping but think she is also struggling with day to day tasks, getting hubby out of bed, waiting for the next fall etc. I think we are at a stage now where choking is becoming troublesome along with being unable to cough up his phlegm (sorry) at what point do you start to prepare food so it's easy to swallow and help with coughing etc.
Sorry if this sounds muddled but am a tad confused with her details.
Had them over for fireworks saturday and FIL had a chocking session.
Thanks for reading and trying to understand my text.
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Happysole
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Is your FIL formally under the care of any of the following? A neurologist, a GP who understands about PSP, a social worker from his local authority, a Parkinson + nurse, an occupational therapist and a SALT ie. Speech and Language Therapist? Who gave him his diagnosis and who is monitoring the progression of the disease? Also giving your MIL support too? Is there a local carers’ support network?
Getting the right help at the right time is very much a postcode lottery and with the help of the PSPA Helpline, as a family you will have to become the experts on PSP and become your FIL’s advocates, setting up a Power of Attorney and you will need to become vigilant and proactive in defending the patient’s rights and putting forward his wishes.
For example, the SALT should be monitoring your FIL’s swallowing / choking and advising on diet, consistency of food and drink, tips on feeding as time goes on and also his speech deterioration which is very distressing.
The OT will be the one to visit the patient’s home and advise on what equipment, adaptations etc need to be provided to help the patient and his unpaid carer day to day and upgrading as time goes on.
I’m sorry if this is all information you already know but knowledge is very much power in dealing with the steady progression of this awful disease which has no cure, only symptoms’ control.
My late husband, who died mid August, finally had a diagnosis for PSP about 7 years ago. My daughter and I with carer support ( that’s a whole other battle!) managed to keep him at home and care for him up until the day before he died, in the amazingly calm, caring local hospice. He died on 13th August and we feel proud that together we carried out his wishes and always put his best interests first right until the end.
Sorry PSP has touched your family. It's a hard journey for all concerned.I think your FIL needs to have the GP refer him urgently to the SALT team and a Dietician. There is a shortage of Speech and Language Therapists who deal with this so empathise the choking and ask for emergency referral.
There's lots of softer option food that are great in the slow cooker as we tried to cook everything long and slow so she could enjoy more normal food for longer.
My mum choked through everything for a couple of years before after another fall seemed to bring about lots of changes to her swallow. All the symptoms became so much qorse from Jan this year. She's still fighting thos cruel illness.
hi Happysole she might need thickener now in her drinks also puréed meals should be available to you through your support we are in Australia so I don’t understand the support system in Uk
(We are from Uk )
Also you might want to look at asking the Doctor for atropine drops they are an eye drop but a couple of drops under the tongue 15 -30 mins before eating seem to help massively with the chocking
Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests they self in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.
I am not a physician.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family a I am sending those notes-document with our experiences and our information by the private mail of this chat.
Hug and luck.
Luis
Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.
Dear Happysole, please look at the excellent advice given by WifeLilyRose and Luis - after being a long time carer for FTD/PSP I support everything that they have suggested.
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