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