My Dad has PD and has had for the past 8 years. We always comment on how he has good days - when he feels like he can take on the world and other days when he is just so sleepy and docile and out of it....
Recently (4 weeks now) however this sleepy period seems to be a permanent fixture and my Dad just doesn't seem himself at all - he doesn't want to do anything, he falls asleep all the time, even whilst eating, he sleeps all day and can barely hold a conversation.
This is really upsetting my Mum (his full time carer, I don't live at home anymore) and every time I speak to her on the phone she breaks down in tears as she feels my Dad doesn't have any true quality of life when he's like that....
They've also been messed around with consultants and getting a wheelchair through the NHS is taking a very long time,
I guess I just wanted to know if this pro-longed period of bad days is normal or if it is a sign of rapid detioriation. I know PD affects everyone differently so it is hard to comment but it would just be good to hear others experiences
I don`t know if being so sleepy so much is normal but my OH has just recently started being like that. We`re seeing the consultant in January so it`s another thing on the list to raise with him.
Re the wheelchair. I don`t know whether it`s a problem where your parents live but we got our GP to refer us to occupational therapy and asked them to assess him for a wheelchair. Things seemed to move quite quickly then. We chose the self propel type, not because he could do that but because I found it easier to manoeuvre and it is lighter to lift into the car.
Daytime sleepiness can be a side effect of the meds. Deffo one to talk to his neuro about, or PD nurse if he has one.
I'm sorry to hear it's affecting your mother. Like many long term conditions, it's the two of them that have it, not just the one. Again I'd say she should also talk to the PD nurse about herself.
Thanks for the responses. I am seeing my parent on Sunday so I will definitely mention to my Mum about talking to the nurse / consultant.... I know she keeps a list of things to discuss.
i am also looking into what to do / who to contact in terms of getting some support for my Mum as I do really worry that it's all getting too much for her (they live in quite a big house and I think as my Dad now needs more care she is struggling to keep on top of things) although this is probably a discussion for a different forum group....
things are moving along with the wheelchair but it's just so slow. The first meeting was in October and it's still going to be a further few weeks before a wheelchair is finally delivered.... My Mum 'rented' one from the red cross temporarily but it fell to bits and they didn't have another one to offer.