I am sorry if this seems like a rant but maybe it is....
Who can I talk to, who cares? From what I have seen no one ! ..My husband was diagnoised a year ago now. Since then we have seen a PD nurse last November who told us she was leaving so it wasnt really worth the visit even though she was really nice. Then saw consultant in April for 5 mins...... Husbands progression is noticable now but everyone ignores it....he went to GP about an issue to be told "Your better off asking your PD nurse that as I dont know much about PD"...what PD nurse? He replied "Welcome to the NHS".....not the answer he expected...
There is a PD support group here but it is more geared up to the 70+....I did go twice but as everyone wanted to talk about meds and themselves health wise,it wasnt good for me as we are nowhere near that age...scared the life out of me if I am honest.
Our youngest Son and his partner moved to the British Virgin Isles recently and that on top of the PD diagnoisis with my Husband had totally kicked me in the gut!!!
Where do I get support,no one wants to ask how I am...only how my Husband is! I dont want people to think I am selfish because I am definately not....my family have always and always will come first....I just want someone to talk to me and someone who can understand how our lives have been turned upside down.......sorry for the long message and rant!!!