Hi there, new to this forum. I have a family member who was diagnosed with PD 9 years ago. I just wondered how everyone found their experience of healthcare. The feedback i have is that appointments always feel rushed, different consultants each time, lack of availability for Speech therapists, GP lack of knowledge. Recently Lewy body dementia has been mentioned casually in conversation with the consultant! No formal diagnosis and not sure what they are doing about it either, what's everyone else's experiences like? LBD and PD are very alike so I wonder if my family member has PD or is it LBD? So many unanswered ????'s. Any feedback would be appreciated.
on a positive note the Parkinson's support group has been amazing!
hi the care received very much depends on where you live for instance i am in Lincoln uk i was dx in three months see my specialist ever 6 months and can call upon my pd nurse if a problem occurs failing that i call my specialist secretary direct and on top of that i have a fantastic GP whom sees me monthly.
And Lincoln County hospital is in special measures under threat of closure and yet I can't fault them maybe it is because I don't sit back and wait for the help I need I ask took some to get my head around it but as they say you don't ask you don't get.LBD thankfully no knowledge I personally would ring the help line on here and ask to speak with a Parkinson's specialist nurse.
Glad to hear about the support group without my branch think I would have cracked up by now.
Kind Regards BB XX
welcome shazbo
i have a lot of support as bb says i think its where you live ! BUT I AM A FIRM BELIEVER YOU NEED TO SHOUT TO BE HEARD ! WELCOME
Hi and welcome Shazbo
I have been recently dx with LBD ,which is the cognitive version of PD , you get many of the usual PD symptoms ie tremor shuffling walk stiffness ect ect ect. Plus the added bonus of poor information retention lack of concentration speech problems and get confused easily . The LBD was dx through a memory clinic and the neurologist agreed, I would think your family member would need to go through a memory clinic to get a dx of LBD as the tests take several hours and require specialist analysis to asses the results ..
That's all I can do for now so live well. Cc