Answers

[Tttp]

I read the posts, from caregivers and ones who have PSP, my question is who is giving them answers?

[Heady]

That wonderful thing called experience!

Lots of love

Heady

[jzygirl]

The answers come from people that are either living with someone that has got psp or people living with psp.

And being as we are all experts on the subject we share our knowledge with others.

      Janexx 

[skoe]

The PSP Association was established in 1995 by Michael and Sara Koe, who had just been diagnosed with the disease, to provide information and support to others affected by this cruel illness. We now have over 20 staff providing a helpline,specialist care advisers,volunteer and friends and family meetings around the country. We have established the PSP Research Network in 7 cities in UK of leading PSP experts who are conducting a major initiative called PROSPECT financed by the Charity. We have a key new Communications Director who will focus on spreading awareness of this disease to Healthcare specialists from GPs to neuroscience and from local communities to national press. Please support our work and watch our 73 runners in the London Marathon 

[NannaB in reply to skoe]

And a brilliant job you all do as well. My very grateful thanks to every one of you.

Nanna B

X

[Doglinton in reply to NannaB]

Hear. Hear.

Jean x

[Katiebow]

I second all of these posts, this forum s a lifeline for me, and , I guess many others dealing with PSP too.  Kate x

[cabbagecottage]

Yes I agree, well done . So glad to know our words are spreading so far and wide 

[Tttp]

I left a post on Answers, thank you for getting back to me, you have to be so careful now a days what you post on the Internet, thank you for answering my question. My brother was diagnosed with PSP 2014' with symptoms 3 years prior I find he progresses very fast for 3 to 4 weeks then will taper off for awhile, he is definitely in the later stages of this horrible disease, would like to mention with all the falls, that I bought him a helmet to wear  to protect his head. Has been a Godsent. Yes very hard situation for the person with PSP and his caregivers. Take one day at a time.

[Cuttercat in reply to Tttp]

Thank you for the information.  My husband has the same, stable for awhile and then something happens.  I'm buying the helmet!!

[Tttp in reply to Cuttercat]

So glad that you are buying your husband a helmet, it will at least keep his head from injury, my main goal for my brother is to keep him comfortable and safe, if you have some ideas to make things easier?

[Tttp in reply to Tttp]

Forgot to add one thing about the helmet , checked with medical supplies they did not have a full helmet went to a sports store explained what I needed they were great got a football helmet they removed the face gear and it works great covers his ears to.

[psplife in reply to Tttp]

Great idea Tttp. We are not there yet but I will remember that one when we get there. I worry about that one fall that will be so difficult to recover from. Ugh! 

Thanks,

Nikkie

[Heady in reply to psplife]

I remember buying S a rugby skull cap.  It was great, until he fell and hit a sharp rock.  Exactly where the gaps in the cap were!!!  Almost as if he had " X marks the spot" on it!

Lots of love

Heady

[psplife in reply to Heady]

Heady

Ughhh, that is the one fall I am talking about. I worry all the time about a bad fall. 

Lots of love right back at you!

Nikkie

[Heady in reply to psplife]

Thankfully, most of the time S falls like a drunk, very relaxed, doesn't try to save himself.  I'm sure that helps stop more serious injury!

Lots of love

Heady

[jillannf6 in reply to Heady]

agree heady

lol jillxxxx

[aliciamq in reply to psplife]

My husband has had staples in his head - up to 10!- four times !!!!

[Cuttercat]

Count me as one of the grateful ones.  It helps so much.

[abirke]

Trial, Error and this and other sites like this ! When you need something , You become very creative !!!

AVB