Thank you all

[Lorri-2]

I always read your blogs and questions so thank you everyone for taking the time to put your feelings and advice on this site. It is sad to know we are not alone with dealing with all the problems this terrible condition throws at us.

My husband has been 'off his legs' since Friday and the aggression etc is getting so hard to deal with, I know I am not alone. Thankfully we have great support from our PSP nurse specialist, Tony's social worker, OT and GP and today had a visit from a Cosultant Geriatrician who has discussed changing the medication Tony is on. I feel very drained emotionly today as the consultant spoke about the need to discuss the future with someone, my heart goes out to you all that have lost a loved one to CBD or PSP.

Lorri

[mummybear]

Hi Lorri 2, so sad to hear about your husband's legs, my hubby is so close to the same thing right now, it's been 3 years since diagnosis , what kind of psp has tony got? and how long has he been diagnosed? drop me a line if you need to talk, you may want to consider having a weeks respite so you can have a brake and think about your future before making any decision in haste. ask the psp nurse for some advice about things too, i find they are a great help. take care keep your chin up Mummybear. [e-mail]

[Lorri-2 in reply to mummybear]

Hi Mummybear and Hazel

Tony has got CBD, diagnosed in 2008 and is now 64. We are looking at respite with the help of our social worker but it is a problem finding somewhere suitable that can take him. I think my next move will be to visit the local hospice as others have suggested, it is another avenue to follow and probably a good place to discuss the advance directive. I have enduring power of attorney taken out years ago when we made our Will, this is quite expensive to do now.

It is great to read blogs and know what views others have on the problems we face when something new crops up. Take care

Lorri

[hazelb]

Hi Lorri....I'm glad you have such good support. This is so important but unfortunately not everyone is so lucky. We were....I had no complaints at all about Frank's care. If I needed help( I looked after him at home throughout his illness ) I only had to ask GP, District nurses etc. They were all brilliant. As for discussing the future....this is something you really need to do, even though it's not easy. I used to steel myself to it & then tackle it head on. Frank had an Advance Directive already, so I took out Power of Attorney which I registered with all the Health care professionals. Frank never read anything about PSP ever...he always said he would rely on me to tell him what he wanted or needed to know. We discussed things while he was still able to communicate as I said things had to be his choice. It definitely wasn't an easy thing to do but I think he understood it had to be done. Sorry if this sounds a bit harsh but it has to be done. Take care & try to keep smiling Love Hazel B xx

[nomansland]

Lorri,my wife and I started our voyage into no man,s land 10 years ago,bit by bit as you know it progresses,we are now at the 4th stage and due to a feeding tube who knows where from here,Unfortunately we do not enter this life with a guide book but if you pray you will get strength which is what will sustain you on this voyage,if it can work for me I,m certain it will for you too,we have tried all the meds and most days tylenor3,6 or so a day,along with Elavil,25 to 40 mg,sleeping pills at night gives us the best results,we have been together since the age of 15 and soon to be 70,keep a lot of happy days photos around to constantly see Tony and not this illness,learn to go from total despair to normal as it happens often,if he sees you down and out his already depressed state will only fall lower,it,s pretty hard to have to hide to cry...in my case the help is also from a great GP nurse and pharmacist,may God send YOU help to support this part of life,s voyage,RD