My husband was diagnosed with PAN in September after a long period of illness and rapidly deteriorated until he was transferred to the wonderful team at Addenbrookes. Unfortunately the previous diabolical treatment (ie none) has meant that he has lost nearly all the use of his hands and feet. He now uses some great ankle supports so can move around which is fab (although he does look like a rather drunk giraffe!). But the lack of use in his hands is so frustrating. Does anyone have any experience of dealing with this? Will he ever be able to use his hands normally again? Just the thought of him ever being able to open a door or do up a button again seems like something we will need a miracle to accomplish.
My patience has run out and this doesn't help