Hi im new here


#1
Hello my dad has parkinsons and thought it would be nice to have someone to talk to who knows what it's like. It's been over 3yrs now .to start with people couldn't do enough we had a lovely nurse who came every couple of months, who now has retired so we haven't seen anyone since April. The specialist we had at the hospital has left and we did have o.t people round who put up rails but wouldn't do anything else without us paying £500 toward it.which we don't have just because we own the house not rent.we have a car on h.p because dad couldn't get in the old one.he finds it hard to get upstairs to the bathroom now we do have a downstairs toilet but you have to go outside not ideal in this weather. I do find it worrying. It's nice to be able to talk to someone thanks.

#2

Welcome ladybug

I don`t have your experience of OT people but when my husband was diagnosed we had a parkinson`s nurse who retired.  After a very long time without seeing anyone it turned out we had been left of the list given to the new nurse.  It seems a long time since your father has seen the nurse so it might be worth checking that he hasn`t been left off a list.  It is hard to believe but we were also left off the specialist`s list so perhaps you need to check there too.  Perhaps citizen`s advice might have info on any help you can get with the cost of adaptations for your Dad.  If you can get to see a PD nurse she might have advice too.

Good luck


#3

have you got a parkinsons support worker she will know what your entitled to mines the best ! dorset


#4

Hello Ladybug

I'm sorry to hear you've been left alone like this. I'm sure you don't need to put up with all these issues. my advice would be to contact the PUK helpline who I'm sure would help sort things. The phone no's on the top of every page: 0808 800 0303

Let us know how you get on.

very best to you and your dad

Semele