Looking after Dad

Hi, I've just joined this forum, my Dad has recently been diagnosed with PSP. It's all new to me (us) & as his full-time carer I'm guessing it's going to have quite an impact on our lives.

[easterncedar]

Hi! As we generally say, welcome to the community, although sorry you have to be here. This place is a life and sanity saver - has made it possible for me to take care of my sweetheart at home and maintain a decent quality of life. I have been talked through many a crisis, and have never had a question or a plea for help go unanswered for long.

May I ask how is your father doing now? The progression varies a great deal from person to person, depending on the type of psp (psp-R or psp-P for short) and the age of onset and a person's general health and stubbornness! There are a few things to do that may help keep a person mobile and speaking longer.

There are many folks here who will be glad to offer help and support, from all over the globe. Please ask, vent, whatever you please, whenever you have time!

Love and peace, Easterncedar

[Yvonneandgeorge in reply to easterncedar]

Welcome to the best site ever, these people have helped me so much. Yvonne xxx

[Hidden in reply to Yvonneandgeorge]

Thankyou. Im slowly going through posts to see who's who.x

[VronB in reply to easterncedar]

What is the difference? havent heard of that? Xx

[easterncedar in reply to VronB]

Some researchers talk of up to 5 variants, but most commonly distinguish generally between PSP-R, for "Richardsons", which is characterized by the strange gait, freezing, and earlier cognitive impairment, while PSP-P, for Parkinson's, has the tremor and rigidity.

[VronB in reply to easterncedar]

Ah thank you. John is definitely "PSP-R". Nobody had mentioned that before. Parkinson's was never suggested. Xx

[1941mary in reply to easterncedar]

Hi Ec .. I hope you don't mind me asking but we have never been told what type of PSP my mum has . So how do we know or find out? Sorry if this is silly question

Jude xx

[1941mary in reply to 1941mary]

Ec just seen your other posts .... was too impatient there wasn't I !! Thank you x

[easterncedar in reply to 1941mary]

It's not a silly question at all, although knowing doesn't get you much. The Richardson's type is the most common, but the P type does, perhaps, respond to some of the treatment that is used for Parkinson's symptom management. Unfortunately some that appear to work do have bad side effects for PSP patients, increasing muscle contractions and cramping, for instance, so it is important to have a doctor involved who is aware of that issue. There have been people here who had been treated for Parkinson's for years, so the effects are bad by the time they are noticed.

And by the way, almost everything I know about PSP I learned right here, so I am always happy to pass on what folks have passed to me!

Peace, Ec

[1941mary in reply to easterncedar]

Thank you so much EC , great information and thank you for taking the time to explain to me .

I am learning all the time .

Jude xx

[Hidden in reply to easterncedar]

Thankyou for your reply & for the welcome. My Dad us 84, I have been caring for him since Jan '16 but doing a lot for him for a couple of years prior. It's been a couple of months since diagnosis but I know think he's had it for maybe a year..or more. His speech has deteriorated, as has his swallowing. Balance is poor but can walk with a stick and my support. Eyesight poor & that's getting worse quickly. I don't live with him but he has an am & pm care package with me in the middle. Not sure which type, I will ask at next appointment.

[Joanna8 in reply to Hidden]

We really do sound like we are in the same position. My dad is at much the same stage I think.

[Kevin_1]

Hi LookingafterDad

Make sure you look after yourself too!

Welcome to the site.

I have found it very helpful and supportive.

Have you seen these information pages?

pspassociation.org.uk/infor...

I found them helpful.

Waiving a welcome

Kevin

[Hidden in reply to Kevin_1]

Hello & thankyou Kevin, I am gradually looking through this site & getting up to speed.

I have a day off in the week & a Sunday off so I do get well needed time out. Although the worrying never goes away.