I would like to start off by explaining, that I do not have PD. But the reason why I have decided to join the forum is for two reasons. My father-in-law does and I work as a Health Care Professional (HCP) and from time to time come across people with PD. I would like to find out more about PD. I certainly know of its effect on my f-in-l. He lived with us for a month last year and to cut a long story short he in now in a nursing home. Even though I have read up on PD and even though my job as a HCP has made me perhaps more aware of PD. I still don;t know what to expect from the end stages. If this is a subject that is too horrible or raw for people to think about then please kindly disregard this message, as I don't wish to cause any distress to anyone. However, my own family often ask me, what next? will he go down hill further? All I can answer them is 'well he is being well looked after 24/7 - thats the main thing'. Can anyone offer any advice.

Hello Pudular,

As a HCP, you will be aware that pd is an incurable (at present) degenerative neurological condition. It is also highly individual. So I am afraid that I at least cannot offer a definitive answer to your Q "what next, what can we expect?" I think that your A to your families Q's re your FIL is most appropriate. He is being looked after , being kept safe and hopefully is appreciating your support.

It is indeed a difficult subject to put forward, but it is one that I know that it is one of which that I and my small family are constantly aware

Hi

I think that what anneberdette has already said is probably about right,everyone is different, it also makes a difference if the person has other medical conditions. The most important thing is being looked after well and making sure that your father-in-law has his meds on time and drinks enough water as this is a major problem in nursing homes.
My husband has had pd for almost thirty years but he was only 38yrs when diagnosed and it is very different than someone diagnosed later in life.
Hospitals and nursing homes are still a long way from understanding pd well and anything you can take to the home would help, you can get a lot of information from national office and download some, they also have a pack for people to take into hospital or a nursing which may prove useful.
my best wishes
vivian

Hi Pudular,

My first response to your post was a gasp. It reminded me of when i was first diagnosed and had such awful thoughts, Yet i have found out since as others have said that each individual is different and there are often many more years before things get to, basically a desperate state. But back to your question....a very brave one that i don't think anyone on here has yet been able to answer? possibly because those on here are pwp and haven't got to that point in their lives yet? so i guess your answers need to come from other carers/h.c.p.

This is of course a very difficult reality for pwp and some may be realists (like me) and others may just not want to know (very understandable) BUT is certainly a question that i think somewhere on this forum needs to be answered!

Maybe this needs to be moved to a new thread/topic where only people who want to contribute/read this information can be/feel confident /brave enough to do so??

Thank you for raising this delicate topic.....any help/advice/support moderators?? most welcome.

Diane

hi pudular,welcome to puk forum,im ali i was dx 11 years ago,im 43 years old now.there is a lot of surport on puk forum,and good freinds to be made.about final stages though ,ive read up about it,and spoke to me neuro about things,the other best thing for me was speaking to puk helpline,they are very patient,and very good advice.it helps me,i worry about the futre along with many other pd suffers,but end of the day ,we are all different,i went to a puk get togeather at stratford upon avon ,young onsett,and to me there was not person there the same as another,different things ,some had tremor,some not,and so on.so i guess wot im tryin to say is,speak to his neuro,or pd nurse,or give puk line a ring,they all will be very easy to speak to,and fill in the answers you and your family require xgood luck x

Hi all,
Thanks for raising this, Pudular.

Drobb, you're right. It is a very sensitive topic and it may be the case that more people in the community would like to discuss it. If that is the case then starting a new thread is a good idea. If this is problematic for some, we can talk through that but I suspect that community members know their minds and will not follow the thread if they feel the issue is too much right now.

This is actually a priority area for us over the new few months. We have recently produced two publications which might be helpful to you.

Preparing for the end of life: a practical guide which you can find here: http://bit.ly/JyymTb

and

Preparing for the end of life: an emotional guide available here: http://bit.ly/JAiYUG

I hope you find these helpful.

Ezinda

i am concerned that some (not all) newly diagnosed people may be upset by this subject. i know i wanted to find out but others are more delicate. my personal opinion is that the carers section should be more delineated, not separate, but better defined as an area that some may want to avoid. perhaps the menu hierarchy needs to be altered. i dont know whether this is covered in the new design.

Hi turnip,
I see your point.

If you all wish, I can move these last few posts to a new thread in the carers' section? Do you think that might be better? I can inform all who have posted to avoid confusion.

But I'm afraid we're not far enough in the process as yet to know what the order of the forum will be.

Ezinda

Hi all,
I've moved this from the Meet and greet section to the carer's section. I'll send you all an email just to make sure everyone is aware of the move.

Ezinda