I know its my own fault for reading this thread but i feel quite down! I wish i had never read it! Im usually a positive person, of course i worry how my pd will progress in the future but no one really knows.
Maybe you could use a symbol in front of touchy subjects?
Please forgive me for moaning im not having a good day, my head feels spaced out, arms are useless and sciatiica pain is terrible! To top it all pc is knackered and im trying to use a tablet (not easy) which bright spark invented touch sceen? Not a pwp!! Oh well got a visit to see my consultant in an hour, that will be fun.
big c
Ps i know there was a clue in the title but im inquisitive!

Hello Pudular,

Raising this subject is very important for both pwp and relatives. This might seem insensitive but is very necessary these days, people need to think before they get to this stage what they want to happen: for example do they wish to be resuscitated or not? as if they haven't a signed written form and the ambulance is called they have to resuscite, you would think this would only apply to people at home but it can also apply in nursing homes if the person on duty calls an ambulance and not the local doctor who certifies death. This has happened where my friend works as a senoir care assistant and she found it so destressing she was off work for the rest of the week, this should not be happening in my view. My husbands dentist has just told me that if someone chokes as he did last week they are told they have to leave the patient until really blue and then us CPR. this may shock some of you but this is what is happening now
In my husbands case the nurses in the home eventually managed to loosen the peice of meat that was blocking my husbands airways but it was a near thing.
A Few years ago we both agreed that we did not wish to be resuscitated and have forms to that affect and we also do not wish to be peg fed or tube fed only kept comfortable with a tube for the medication . my husband has also donated his brain to research at the tissue bank, they do need both pwp brains and non pwp ones to advance the research for the future.
For all concerned it is also important to discuss financial details ei:we set up enduring power of attorney for both of us and our son is also on the form too, in the telegraph at the weekend there was a letter where a wife was suprised that most financial things including the house were in her husbands name only, this really is bad as if he needs care it will all get taken to pay for this and the wife will be left nothing, they cannot make her move out of the home but it will have to be paidback at a later date.
I am truly sorry if this upsets people but they are things best sorted out earlier as it will help and coping with these later stages are hard enough without these complications.
So Sorry it is so long.
my very best wishes
vivian

Sorry Big C,
I have just added to your feelings of gloom, but these are important issues and once put in order you can forget about them. Some people feel a sense of relief that they have everything in order and none of us know when our time will come. I hope you had a good visit with your consultant and feel better tomorrow.
best wishes
vivian

Thanks Vivian i do understand what u are saying and sadly have read how you have cared for your husband for over thirty years. You more than most know how pd affects our future.

I had a good meeting with my consultant, he is really pleased with my progress (i was dx 3 years in Aug) and am stable. Im feeling much better after seeing him.

Of course my husband and i have talked and made plans for the future but i hope thats a long way off!

C

Dear Big C

I am like you don't want to know the outcome but very curious also. I have read books and done some research. Only wishing I had not and realising I should of listened to what others said, not too!!!
Anyway to late done! We are all different as to how we cope with this cruel disease. I have to be hohnest and say that PD has ruined my life and my plans I so hoped to have.( As it has others.) But I will deal with it. So don't look to far forward .

love from PB x Good luck (think we live close by Big C)

Thanks Posh Bird im pleased im not on my own! Bl....y pd ruins plans if you let it!

Do u live near Beverley? I remember you saying in the past u live near by.

Lv big c

I may be being unduly optimistic (not something I am often accused off) but it is not necessarily true that people starting out on this long road will end up in the same place as people who started 20 years ago. If you compare what is now known with what was known then enormous strides have been made. Twenty years ago the best surgical technique was a relatively crude cut made to some tissue, now electrodes can be inserted without damaging any tissue, the very nature of cells have been changed by altering their internal constituents with modified viruses. It is good to be prepared for the worst but i have hope, reasonable hope I believe, that for at least some of us, a different destination is in store if progress continues at the same rate.

Hi turnip
What you have said is very true. Medication has improved over the years.
(for some at least)
I was feeling a little down myself yesterday. Had to wait ages in the waiting room to see my Consultant got agitated and sat there can be so depressing. These dear people in there also just waiting, made my heart sink!!! Really felt I should not be there. Got called in by the nurse, then broke down in tears...whatever is going on with me.

(Sorry not a nice quality self pity) I give everyone on the forum my deepest respect and the way you all cope so brilliantly. You are just amazing. Keep going!!!!!!!!!!!

love PB x

we all feel sorry for ourselves sometime and quite rightly! and this is the place to express it.

Thank you x