How do you know what stage you are in ?

[jac001]

Mum has PSP and is really awful at the moment. Hospice consultant has put up a morphine driver and last week they done bowel preps to try and ease the chronic constipation and pain that she is in. The morphine isn't really killing all the pain. Its horrible to watch her in so much pain. How do you know what stage in this horrible illness you are at. Not sure if I can watch her go through much more it is heartbreaking.

[kay1]

wish there was a book of facts, unfortunately it is a question of "How long is a piece of string" It must be so awful for you seeing your mum suffer in this way. I firmly believe that PSP just likes to throw every thing at us, but in no particular order. Just wish I had the answers. x

[jac001 in reply to kay1]

It just keeps taking another part of mum away every day. I really hate this illness. Mum was so happy and full of life now she is just an empty shell

[jillannf6]

hi

i am at stage II and have been since dzd in dec 2010 so am lucky and am pretty su rei hav e the slow sort

when was your mum dxd do you ge the PSP STUff as there si a lot about hte stages on their websit and on the us cure psp website

the pain must be terrible and i feel fo ryou

i am for the 1s titem in mmy life glad tha ti don't hav echildren to watgch me going downhill

lol jIlland hugs

[jac001 in reply to jillannf6]

Thanks for replying. I have got the book and info. Just wish someone could give you a straight answer and not have to put all the if we don't get a chest infection , UTI but they can't. Mum was diagnosed in Feb this year after having been treated for PD for 5 years. She had a number of falls and ended up with no hip joint on the left side so she just has to wait on us or the carers moving her about. She is spending around 23hrs per day in bed as she is in so much pain. The morphine is helping but its just so hard.

[MJ-Mark]

Hi

we all go through identical situations, but at different times. it is one insidious disease. my Dad is getting worse every day!!

read this link, hope it helps you

MJ

pspinformation.com/disease/...

[jac001 in reply to MJ-Mark]

Thank you had forgot about that link. I think we are at end stages. This illness is so cruel every day I lose another part of mum.

[jac001]

Palliative care consultant has been to see mum today and think that we have just weeks left. In my heart I knew it really but the wind has been knocked out of me completely.

[jillannf6]

hi jac001

i am so sorry tha tyour mum did nto ge t a proper diagnosis sooner

it is nto easy to liv ewith 24 /7 nor for our loved one sto live iwth it as well

so perhspa ur mum may be reaching the end] of her journey with thsi psp

plz let us know wha thappens

lol and hugs

JIll

[jac001]

Haven't had a good weekend. Mum has been getting weaker every day. Hasn't been out of bed for at least four weeks now. Seems to be getting thinner every day. She isn't eating a lot and drinking v little as well. Morphine driver is up and they have added in Midazolam as well. Hate seeing mum like this. thanks for all your messages it really does help to know that I am not alone.

[jac001]

Mum has gone to heaven on Sat 1 Dec. will chat more later.

[mummybear in reply to jac001]

So sorry to hear about your Mum, Don't dispare keep thinking of all those wonderful times together and she will be with you forever.!