Explaining.....

[Fiddle]

How do you explain this blasted disease to friends and family?? No-one has heard of PSP so what's an easy explanation for all of those kind people who keep asking after my Dad. Any suggestions?

[coleen]

I just tell people that my Dad had a rare degenerative brain disease. I agree with you. No-one has heard of PSP. It's so sad. That's why this site is so special. I vented continuously over 3 years and it helped me and my family cope.

[Fiddle in reply to coleen]

Thanks Coleen

[jillannf6]

the psp assoc has a useful card(free) which expalins the disease briefly

well worth gettign to hadn out to people who want to keep them#

lol Jill

[Fiddle in reply to jillannf6]

Thanks Jill, that's a good idea x

[Fiddle in reply to jillannf6]

Hi Jill, I'm searching through the site but can't find the card, do I have to call them and they post them out or can I print it off?

[jillannf6 in reply to Fiddle]

hif

you need to tel them and they will send hem out to you or you can pick htem up at a PSP do

lol JIll

[peterjones]

that's right mate em health unlocked and ask them for some pamplets on psp and they will send you some just say how many \you need and you will get them by post its pain having to keep explaining to people what it is so give them a pamphlet on the subject they will probably take it in more then mate anyway peter jones queensland Australia psp sufferer

[loppylugs5]

So sorry,it is a double blow as most people have not met PSP before. There is a fact card from the PSPA,very useful to give to opticians dentists friends and family.So many people say there must be a cure and people do not know what to say,the card saves a lot of embarrassment for me,at first I was in danger of emotions which would not help my husband and he is the sufferer.I also used PSPA christmas cards to some then they can google it to find out more,Good you found this site anyway,Loppylugs

[jillannf6 in reply to loppylugs5]

a good idea r exmas cards1

lol jill

[dorothy-thompson]

I think Coleen has the answer, IT IS a very rare degenerative brain disease, which, incidentally, Dudley Moore and the Nigel Dempster had (only relevant if you live in the UK).

I used to go through some of the symptoms and then would always end with "Google" it. Unfortunately my husband is now way down the line so we do not go out much, only to family.

Take care and stay on the site, regards.

Dorothy Thompson

[jillannf6 in reply to dorothy-thompson]

hi dorothy

how goses itiwiht u and your husband?

i do think abotu you ad how you r managing...

lol JIll

[dorothy-thompson in reply to jillannf6]

Hi Jill

How are you and how nice of you to think of me!

We have good and not so good days - sounds familiar? - and the last few have been a bit low because my husband has been going through what I refer to as his dementia stage. He can be very noisy, moaning and groaning, he gets very cross and angry with me and now he is beginning to refuse to eat sometimes. When I try to talk with him about it, he says " I have got PSP", I say I know it must be almost impossible for you but it is also very difficult for me as all I am trying to do is help you"

But in the end, like in the song, I just pick myself up, dust myself off and start all over again!

You take good care of yourself Jill.

LOL

Dorothy

[82wendy]

Hi I usually explain it as a rare brain disease which generally causes muscles to weaken I print of information from the internet what really appauls me is having to explain the condition to the medical profession.

[Heady]

I basically say, it's a brain disease and it's as bad as it can get! That normally stops people asking too many painfully questions, that I don't want to answer! To friends and family I tell them to google PSPA. The worst is getting through to the medical profession, mostly they pretend to know, but it's easy to spot the fakes, like our GP!!! You must get all the leaflets from the PSPA, they even produce one for the professionals, so I always carry this with us, if we go away and take it if S needs emergency treatment, or the dentist etc, etc. I think the rule of thumb is, nobody know anything about this condition, so you must be armed with as much knowledge as you can, to help fight all the battles that are going to come your way! Are you your Dad's main carer? Who ever is, make sure that they get help from where ever they can! You will find that everyone here preaches that, (but very few of us exactly practice what we preach)

Heady

[SharonAB]

Dear Fiddle,

The You tube posts and newspaper articles on line I think give the best appreciation of what is, because 'real people' are involved just like you, your Dad, family and friends.

When my husband was first diagnosed I printed off material from the Internet as suggested by Dr's and handed it out to family and friends. But I now know it meant very little as it was written in 'third party' about a disease, that they could not see in John.

Our ten year old daughter - Chloe has always known her father with PSP. Things went amiss when she was about a year old.

As most recently of an hour ago Chloe described it as "Daddy has Progressive Supranuclear Palsy. Its when your whole body shuts down and you don't want to be there".

I found it interesting that a few months ago Chloe makes a point of saying the disease name out in full and I asked her why? She informed me PSP is a game, and I don't want people wondering if that it is what I am talking about.

Regards,

Alana - Western Australia

[SharonAB in reply to SharonAB]

Dear Fiddle -

Here are some internet sites that my friends/family have viewed -

youtube.com/watch?v=WuVjeVXLTLg

youtube.com/watch?v=fbeLWp9QHss

lifestyle.topnewstoday.org/lifestyle/article/8979245/

youtube.com/watch?v=WuVjeVXLTLg

youtube.com/watch?v=S9UJMT4uZe0

I've also found the presentations from Dr David Williams have been particularly helpful to give some balance and different perspectives.

The first part is youtube.com/watch?v=q8_bikkrZiA

N.B. I've removed the when I have posted each of these sites as each keeps appearing like a Facebook entry for you to view immediately (all rather overwhelming stuff..).

Regards,

Alana - Western Australia

[Fiddle]

Wow, thanks all of you, I'm going to get researching some more, some great suggestions from all of you. My heart goes out to you all, especially little Chloe xx

[jimandsharynp]

The organization PSPA which is in the UK has an excellent card (business card size). On the front is the PSPA information but on the back it spells out the specifics of how terrible PSP is. I just hand these out to people. Once they see on the card "no medications and no treatments" etc. and the symptoms they will understand the disease better. There is a lot of information on the PSPA site and also on the CurePSP.org site as well. If you email me I'll send you some information on how to explain PSP to family and friends. [e-mail]

Jimbo

[Fiddle in reply to jimandsharynp]

Hi jimbo, thanks for your advice, I'll search through the PSPA site again. I keep reading stuff but it's not sinking in just yet.

[jimandsharynp]

Sometimes a simple explanation like:

"PSP is a rare brain disease with no medications and no treatments and will result in death within a few years. <name of patient> health will be challenged over and over during the course of the disease".

Brutal description but truthful and to the point.

Jimbo

[jillannf6 in reply to jimandsharynp]

good on ye r jim

tell it like it is1

lol JIll

[marq]

Tell them it is a neurodegenerative disorder in the Parkinsons category; if they want more info and you want them to know the details, refer them to the curepsp.org website - there is a bounty of info there.

[pipperscott]

I would say that my husband has parkinsons plus. It isn’t quite the same but in the same ballpark.

I wish you all the strength possible. It is just a devastating disease...

[jimandsharynp in reply to pipperscott]

Pipperscott, I think many people have a view of Parkinson's or know a person with it so I don't like to use the term Parkinsonian or Parkinson's Plus. I think PSP is much more devastating than Parkinson's. It's like Alzheimer's disease a term I also don't use to describe PSP because of the differences. Parkinson's can be treated with dopamine which, in most cases, doesn't work for PSP. Just my opinion and of course everyone can explain the disease they way they choose.

Jimbo

[Hidden]

I did occasionally explain it as either similar to Motor Neurone disease but faster moving or several years worth of Parkinsons's all squashed into a short space of time. Because people have heard of the effects of both they do seem to take on board what you are saying. To those that want to know more I explain it takes away the ability to see, walk. talk, and swallow whilst mostly leaving the mind intact.

[bambam99]

We always say, its Parkinsons with bells on. At least most people have heard of Parkinsons. I agree not even a lot of the medical profession know about PSP.

[JudyJ]

I say it's like Parkinson's with extra symptoms, or it's like Parkinson's, but worse. I do say it's called PSP and give a brief snapshot. I'm determined to raise awareness even tho I get blank stares in return. I've been diagnosed a few years now, and some close family members still claim to not understand it. Frustrated me much. Have provided ample info and patient explaining over all of this time.

I have chosen to stop explaining and re-explaining to those who have the info and choose not to embrace it for whatever reasons they have. Need to keep my sanity.

[jimandsharynp in reply to JudyJ]

Judy, I know that the medical profession likes to link Parkinson's and PSP together and call it Parkinson's Plus. However, I feel that PSP is much, much more devastating than Parkinson's and so I don't like the connection being made. From a medical standpoint it makes it simple to lump PSP, CBD, MSA, and other brain diseases into Parkinson's Plus. I think each of these diseases are terrible and should stand on their own in discussions and not be lumped in with a more common disease, Parkinson's. These diseases won't get more well known if they get lumped together rather than standing on their own. Just my opinion. Jimbo