Linter, a final word. The "realities" are by no means "certain" and you are very much in a position to shape them with your support and encouragement. Have you ever read Dickens' The Christmas Carol? You are, in a sense, seeing "Christmas yet to come" The decisions you make will determine the reality.

(Apologies to all for running on so.)

we all are entitled to or opinions, i only request you replace "cured" with allegedly cured when you post. there's a lot of falsehoods on the internet.

Hi,
I am going to pass on to you the best advice I ever had from wonderful PD advocates on this forum and its predecessors. It has stood me in good stead through many difficult times with this disease. And believe me the difficulties were not always about the condition, some were other peoples responses to me, and even doctors responses, as sometimes this diagnosis thing can be on off too, as one doctor can see it, another can't.

So here goes:

The best thing you can do is have a good attitude to your PD.


I would also like to add to that, be optimistic about yourself, and realistic about practicalities. Remain hopeful, but if you find things difficult then find another way of doing things. You will probably find year on year, looking back that you have lost some of the things that you are able to do now. Don't dwell on them, find something else.

Many people with PD find that they develop creative tendencies, there are compensations to this disease. It is no picnic, but on the other hand slowing down can give you a chance to reevaluate your life and get your priorites right.

As a carer and partner these things apply too. Neither of you are different people because of this, it is just going to change your perceptions of the future, but the real living is done right here in the moment. Do not let that become despairing, there is still a lot of good living to be had. For most this disease is very slow, and even once you are on treatment there can be surprises. You can think that you are going downhill and a tweak to medication can bring back something you thought you had lost altogether.

And the best thing of all is to keep moving, the best thing you can do for your partner is to encourage her to exercise, to her own ability, to help her enjoy it, and to share it with her. Exercise is difficult for some of us, and when it is we need someone to encourage us with good humour and a lot of caring.

These are the things that make a difference. By all means sorts out the financial realities, look into the treatment options, and get the best doctor you can find, but the real thing that will help her is that you are by her side helping her when she needs it, and supporting her in doing things when she wants to do them alone, and that you still keep on regarding her as the person she is, and not someone you are looking after. The worst loss that comes with any disability is people seeing you as your condition instead of the person you really are.

Best wishes to you both, adjusting to this will bring you challenges, and the future might seem less rosy, but take it one step at a time!

Lindy

Well said Lindy.

Soccertease,

A polite no to your request ... unless you care to refer to PD as an allegedly incurable disease, which is how I regard it As you say, we are all entitled to our opinions and mine is that the internet is indeed full of dross, about drugs too that allegedly relieve symptoms or allegedly have no serious side effects.

Thank you all again for your further thoughts and information (and almost hopefulness). i'm processing it. it's a lot to deal with.

a random question. one of the things my gf has wanted to do more of all her life is to travel. she's never really been able to afford it. otoh, i can basically afford it, for one person, since i'm also doing most of the earning and all of the saving for the two of us. but i was thinking, maybe i should take $5 - 10k from the kitty and let her spend it on travel to wherever she wants for however long she wants until the money runs out. she'd always thought she'd travel when she gets old and retires, but maybe it's best she do it now, while she's still able to get around pretty darn well.

otoh, she's like $30k in debt and could use the money to pay that down. otoh part 2/ if bankruptcy is in the future, why do that? otoh part 3/ maybe i should be saving every nickel for the probable dark days ahead.

what do ya'll think?

sadly, i wouldn't be able to go with er on such a trip, due to work. but i'm basically a stick in the mud homebody anyhow and she might have more fun by herself, meeting new people, and so on, which she is veyr good at. (actually, the shame of it all is, if either of us had to get pd, it should have been me; she has always been vibrancy itself, while me, erf, not so much ...)

damn it all to hell.

linter

Without hesitation, I would say spend the money on travel, not because I think she's going to go rapidly downhill, but because I believe that anything that lifts her spirit and makes her happy will give her brain practice at producing dopamine. Go towards the light, go towards joy. You will both benefit.

Muireann I wonder how long it'll be before they're off to Stockholm to receive the Nobel for their recovery discoveries?

Rick,
I guess you know the song!!! Please don't take offence at the following, I value our friendship.
We know each other well from the 2 weeks we spent together at our house in the UK. I also guess if you had thought about it, you would not have pressed the send button before you wrote, "you had better go, because she isn't going to die from PD. It is much worse than that.". It will have two effects.
First it will put the feat of God into newly diagnosed, ( I have had correspondance from newly diagnosed, very frightened and upset.)
Second, It might well resulty in a breakup of a couple who were quite happy together before your comment.

We have often said PD is a mixture of related illneses, we mostly are different in the symptoms we show, our rate of progression, the age at which we show symptoms and so on. Look at Muhamed Ali amd MJF, both have had PD for a similar time. MJF is frequently interviewed and is in good shape. Ali is in very poor shape, unable to speak, and comunicates with his wife by a small typing machine. I am also about the same length of time with PD, (20 years), and have a slow progression. still drive occassionally, can still shower and dress in the morning unmedicated, but can barely shuffle when unmedicated. So we can't say for sure that we will ALL die in a terrible way. Some may simply die in their sleep. We can't say for sure that in your later years, you will die of cancer, but some will. All we can say for sure is we will all die!!! You need to keep a positive attitude, (like Lindylanka), I'm sure it helps.
One reference, an analysis of 240 Parkinson patients
http://www.springerlink.com/content/j836773656w30617/
gives the causes of death as,

Pneumonia 44%
malignent neoplasms 11.6%
heart disease 4.1%
cerebral infection 3.7%
setacemia 3.3%

So what do we mean by a terrible PD death? As we have said, we all die of something.


Lets take the optumism further.

"PD is an incurable disease" Yet we have reports thar a small number of PD patients who have been cured". There is a suggestion that we should say "allegedly cured" which is probably safer, I have seen 2cases of a cure" being effected. In both cases they could move like a healthy person, and never again needed medication. To me that is a cure, There are other examples in this thread. of another 2 people being cured. So there are grounds for optimism that should give hope.

Ron

Ron, as they say, the road to the Underworld is paved with good intentions. Mine were the best but I needed to work on the delivery.

But glad to see you pop up. You and I each have 20+ years to our credit. Mine was Young Onset and I suppose yours was Senior. Between the two of us, we pretty well cover the spectrum. And, as you say, we both still drive (even though you use the wrong side of the road ) and are engaged with our worlds. Maybe we are fortunate, but fortune sometimes rewards effort as well. I don't know anything other than that I am not even near ready to quit.

Ron et al: Thanks for speaking up. As a matter of fact, one thing I would now *never* do is allow my girlfriend to see this thread. If, as Rick says, the PD isn't going to kill her, the shock of reading Rick's comments certainly might, esp since it almost did me. As per usual, sometimes ignorance is bliss.

Anyway, I'm going to start a new thread about tumeric/ginger/green tea dosages, since i couldn't find anything especially helpful using the search function ...