PSP Association

How are you?

I have been working at a conference this week and have met a lot of people that I haven't seen for a while. As part of the normal courtesies they ask "How are you and your family?" and I almost always answer "Fine" because it would take too long and be too complicated to explain that actually I am ok but Mum isn't. I think we do that a lot, hide how things really are with us; there are probably a number of reasons but sometimes its just that we don't want to bore or burden the other person with our troubles.

A friend introduced me to a tool that I think can help. The website was created for people with mental health disorders but I have found it useful too. It is easy to use and tracks your mood by means of your responses to 20 simple questions. You can make notes which will help identify the reasons why you are feeling the way you are and over time may help you to avoid triggers that make you feel low. (I inevitably have lower scores when I am tired.) Crucially, it also gives you the option of having your score sent to a trusted friend by e mail; the friend can then choose whether or not to get in touch with you and offer support. There is no obligation on them to do so but you have the comfort of knowing that someone somewhere knows how you really are.

If you find it difficult to express how you feel about your situation can I recommend you give this a go?

4 Replies

hi hmfsli,

I know just what you mean when people ask how you are haveing

CBD you loose the use of one hand first so i ware a splint on that

hand and it surports the wrist and stops me getting pins and needles

in that hand so when people ask whats wrong if i tell them ive got a brain

disease they ask silly questions like whats it got to do with your hand and

i get stressed out trying to explain what it is so now i just say ive hurt

my wrist and leave it at that i know the truth thats all that matters, I hope

your keeping well and your mum is keeping as well as she can you

take care of your self,



Hi all

I do sympathise with you regarding trying to explain to people about your condition; my hubby and I get this just the same (he suffers from PSP). However, we have found a simple way to deal with this is to always carry some of the PSP Information cards and hand one to the person asking the question. While these little cards do not go into great detail, we have found that there is sufficient information there to give people a rough idea of both conditions. If people are sufficiently interested to know more I always suggest they should visit the PSPA website. These cards are free from the PSPA online shop. I hope you find this information helpful.

By handing out these cards I am trying to make as many people as possible aware of these two dreadful illnesses. The more people who know, the better.

Take care..........SuzieQ x


I have done the same thing with the cards, and was wondering the best way to get more sent to me, I will also checqu out the website recommended by hmsfli.


The fact cards are very useful, if anyone wants more of them, then just DM me or email with your address details and I will post a batch off to you.


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