The Little PSP cards

[Peter2]

I have avoided reading and writing blogs for the last couple of weeks, in part due to quite a large amount of building work going on at home in order to make access to the house easier for my husband. Also we needed (like everyone blogging) a break from psp. On Saturday evening my husband had a nasty fall landing onto his head leaving him with a degree of amnesia, grazes and bruises over his head and face. We spent the evening in a very busy A&E where no one had come across psp before. Fortunately I had taken some of the small info cards with me and they proved to be very useful. The doctor who saw my husband asked if he could keep one of the cards. I immediately said yes.

After a CT scan it was confirmed the injuries were superficial thankfully, and we were able to come home.

Thank you to PSPA for providing such a useful piece of information. My husband is slowly recovering, but this fall has upset him more than any of his previous ones.

Take care everyone and try and get a break when ever you can.

Love to you all.

Peter2.

[kay1]

The cards are invaluable, and like you, I always carry them and let people keep them, hoping they will understand the nature of this dreadful disease. Take care

Kay x

[Peter2 in reply to kay1]

Hi Kay1,

I agree with you, if there is little we can do, we can at least raise awareness of this condition. Even the builder we have at the moment knows quite a bit about!

Best wishes

Peter2

[Hidden]

Hi

It never ceases to amaze me how little the medical staff still know about PSP. I took my husband to the A&E after a nasty fall with injuries to his head. In spite of explaining the situation to them we were kept waiting for four hours. Lunch time came and went and we weren't able to get even a cup of coffee because I didn't have enough change for the machine. The staff were indifferent when I asked if they could give me change so we had to go without.. All of this was only three years ago and during that time I gave a paramedic several copies of information I had written about the disease so that he could distribute them to his colleagues in other Boroughs.

I am happy to see that some hospitals are finally beginning to take notice of this disease.

Regards

Lina

[Peter2 in reply to Hidden]

Hi Lina,

So sorry to hear about your experience in A&E, it's stressful enough when you are naturally worried about the person you are accompanying, to then experience indifferent staff is terrible.

Whilst we spent considerable time in A&E we were well care for whilst waiting to see a doctor. A very kind porter did bring me a cup of tea. Of course my husband couldn't have anything.

Best wishes

Peter2.

[Idris]

So glad to hear this, and glad no serious damage was done. You've reminded me that I really need to get myself a stash of the cards - thank you.

I don't know if you find this, but it seems that the emotional toll of a serious fall can be as significant as the physical - my Mum always loses a lot of confidence for a while after she's hurt herself, and is a lot more fearful.

Hang in there,

Idris

[Peter2 in reply to Idris]

Hi Idris,

Yes you are right, these falls do have quite an effect. My husband over the last three days has been more irritable since his fall and is not moving around so well. He saw his doctor today who reassured him his injuries were superficial and within a couple of weeks the bruising will have subsided. My thought, only for new bruises to appear.

Thank you for your reply.

Peter2.

[jillannf6 in reply to Peter2]

hi all

it is important too to have acrecord of the no of falls f chc is required - i \have been to a local psp meeitinbg today and that was re-iterated

I have nt been recording mine as it si tediosu to do so (3 a day)but must as proof for the future

lvoe jilll

[SuzieQ]

So sorry to hear of your husband's nasty fall. It is really distressing for both the sufferer and the carer. I hope he makes a quick recovery and is not too traumatised.

It was some time ago when I made the suggestion on here that people affected by PSP should always carry and distribute the small PSP information cards and I'm really pleased that people have taken up the suggestion. Anything that helps to "spread the word" about this dreadful illness is helpful.

Take care..................SuzieQ xx

[Peter2 in reply to SuzieQ]

Hi Susie,

I'm pleased you had the idea of the little card, it was helpful and yes it helps to spread information about psp.

Best wishes

Peter2.

[suwils in reply to SuzieQ]

Hi SuzieQ - I had an appt at my local hospital earlier this week (not PSP related just for a change) i was seen by a junior doctor who exprerssed a wish to examine me briefly at the end of the consultation as he had an interest in PSP. I was happy to oblige and took the opportuniity to give him one of the PSPA lnfo cards - he was grateful and said he would visit the website. I just recently changed my GP (long story!) and when my new GP saw me for the first time, I took that opportunity to pass on one of the PSPA info cards. I have some with me whenever I venture out as they are a real godsend especially when sometimes speech is difficult etc. I have started using a laser cane which often causes conversations to start up - out come the little cards again! I think they are great. love SueW xx

[dorothy-thompson]

In my opinion the cards would be so much more useful if they were similiar to the Alkzeimers Society cards where they give details of the persons contacts in case of emergency.

But like you all I spread the word whenever I can. Hope all is well with you all.

dorothy-thompson

[Peter2 in reply to dorothy-thompson]

Hi Dorothy,

Maybe there needs to be two types of cards, the little info card and a card a patient could carry something like Medialert. What do others think?

Best wishes

Peter2.

[jillannf6]

hi all

i have the cards but have been reluctant t= use them ( i have no idea why!!? )but Must do so!!

tthanks for rremnding me about it

BUT when i had to go to A\&E a few weeks ago adt r a bad fall i had nothing with me apart from my mobile so could nto give the cards out

love jill

[Peter2 in reply to jillannf6]

Hi Jillannf6,

So sorry to hear you too have had to visit A&E recently and hope you have now fully recovered. I carry a few of the cards in my handbag just in case.

Take care.

Peter2.

[MJ-Mark]

OMG I would love some of those cards!!! There is nothing over here like that. PSP is virtually unknown!! I am constantly trying to explain it to thse who ask, and to some doctors!! Can someone help me get some of them??

I sure would appreciate it.

THANKS

MJ

[Peter2 in reply to MJ-Mark]

Hi MJ-Mark,

Maybe the pspa could send you a supply of the cards as a member.

Best wishes.

Peter2.

[LesleyB]

Hi

The joys of A&E. The cards are very useful and I am still using them as part of the fundraising I am doing.

They were a big help to me when I was dealing with Health and Social Care Staff

Lesley

[clara]

Thank you for bringing this topic up...I have just ordered some cards from the PSP association ''shop'' on the website, MJ-Mark you can order some there too. These will help me as I care for my mum, Rosemary.

Clara

[jillannf6]

yes i ha ve answered your question

jJil

[FranR]

Hi everyone.

I carry my card everywhere. I show it to people when I'm trying to describe what PSP is - I even showed it to the health visitor who can to see my baby, as she saw I was very emotionally stressed and I was telling her about my dad and what we've all been going through. People are very kind and it's so nice to see people taking an interest and trying to understand the condition. The health visitor was especially interested as she thought the symptoms I was describing in my dad could be what her sister-in-law was showing too, and was going to get her a referral. Dad was lucky enough to have people who had heard of PSP look after him during a recent hospital stay - he was in a week with a stomach ulcer. It made us a little less worried knowing people understood just why he wasnt talking or able to show signs of his discomfort. How frustrating and cruel a disease this is - that it should take everything away from a person...