Tired yet, this is not an uplifting post

[jprall]

Anyone tired of being positive, hearing it will be o.k., how do you feel, one more test, hospitals, medications, frustrations, lack of money, tired, worn out, heart breaking, scared,?

[jillannf6]

yeah

but tired of nto sleepgin v well!

no meds for thie PSP or hospital appt with the consultant unitl MARCH 2013

But it is our lto in life 2 deal with what we have

...]

lol JIll

and asmile

[jprall]

You r a sweet person. You have been the closest experience to my late brother. I adore you! He was crap with computers, but I know he would have been like you had he been computer literate.

I admire you.

j.

[anniemay]

Yes, all of these, especially in the middle of the night, or when old songs that used to have a special meaning are played, or when somebody asks, "and how are you coping". I could't have even written this without breaking down in tears. What saved me was PSP association nurse suggested referral to a local hospice. They have made such a difference, both in making me as a carer stronger and what they do for my husband. Thanks to them he has just got botox injections in the eyes which means he can keep his eyes open for the first time in a couple of years. It has made a great difference to his life, including better mobility and less falls. His neurologist said it wouldn't work, but the hospice went straight to the eye consultant and we are getting it done as necessary (about every 2 months) on the NHS.

If you are in the catchment area of a hospice please consider trying to get accepted, your GP can refer you or you can apply yourself - it takes some of the weight off your shoulders and ensures you get help and advice on everything you need!

Hope this helps, Ann

[jillannf6]

HI ANN

it si good advic eto bring in the hospice - when i am ready fo rit which is not yet awhile

i am v tearful at the mometn esp wehn asked how i am

i shoudl liek to hav ehte botox on my eyes again when ia m ready which may be when i see the neuro inh MARCH 2013

LOL JILL

[Hidden]

Yes I am tired of fighting all the legislation, re explaining the symptoms over and over, not sleeping as worrying about mum all the time. Tired of being told help is coming and it never arrives, tired of hearing that all the professionals I need are part time. I could go on. It's such a fruitless task trying to get help and the care pathway highlights just what is not happening.Even the neuro is on holiday for 3 months (in India) and can't reschedule our appointment until January as mum has Shingles.

Dianne

[Kathy in reply to Hidden]

Dear Dianne,.

I'm so sorry that you have been having problems contacting the profssionals you need because they work part-time However, they DO have lives too and you don't know what challenges they are facing. I am a physiotherapist, I chose to reduce my hours and work part-time to help care for my Mum - who has PSP.

I hope your Mum is soon over her shingles and that you can get the help and support you need

Love Kathy

[Hidden in reply to Kathy]

Dear Kathy , It was not a slant on the professionals-they do a great job but there are not enough of them! I too work part time as a cover teacher so that the rest of the time I can oversee mum's needs. But surely if people need to work part time there should be others to cover the rest of the time albeit part time too? That's what happens in my line of work. Unfortunately it turns political after this. This said, it doesn't stop me feeling weary of it ! Maybe I have been particularly unlucky as I have had trouble catching every single person we have needed. What I wonder is how people with PSP on their own cope?

[Kathy in reply to Hidden]

Dear Dianne,

Don't get me started on the politics!! In our team we have lost 2 senior members of staff who will now be replaced by one junior member of staff in order to save money!! It just doesn't add up! When are they going to realise that if they keep cutting back and keep cutting back, eventually there will be nothing left?!?! Over the years I've said this to various managers but it never seems to make a difference

It breaks my heart to think how many people "out there" don't have friends or family to stand up and shout on their behalf.

Take care

Kathy