Doesn't want to know


Started the process of being diagnosed Aug 24 2017, confirmation was Jan 24, 2018. My wife has the problem of not wanting to help, understand or care for me in the future. I’m just turning 60 so hopefully sometime to go yet. The problem I gather is that she does not know where I will be going on this PD trip, if she could have it all mapped out, she’d be fine but I know that’s impossible with PD. She also hates driving and I’ve been stopped, difficult as we live in very rural North West Wales.

Any advice out there for her please?



( a trip without keys)


Hi. It’s a long lonely journey for carers, I’m one, at the start it is hateful, it is very difficult to understand, lots of cross words and misunderstandings. I felt terrible and also afraid of the outcome. But like you say we are not aware of what is to come. If you have a PD nurse who might be able for to put you & your wife I touch with other PD’s who can then chew the cud, so to speak. I found this helpful. But be warned after six years there is still lots of problems to overcome. You both have to help each other with this. Thinking of you and all the very best… make hay while the sun shines.
X Jama


That’s probably the most difficult bit - not knowing what the future holds, and at times it worries everyone. Eventually, after a lot of pointless sleepless nights, I found myself thinking that really no one know what the future holds for us, whether we have PD or not! I know it sounds trite but that did help me get things a bit more back in perspective again.
I second what Jama said.
I would say if you want start a new hobby, join a group, or what ever, just do it, There’s no time like the present. And the distraction of something new is a great way to take your mind off worries. Daffy


I am carer of my OH and it can be frightening, Realizing that all those with the condition are different and there is no set progression was a help in making me try harder to be positive, especially as I am not a natural optimist. We had to accept that our life style would change and this has been hard for us both but we can still enjoy life. Don’t expect your wife to become used to things very quickly. All the best!


Hi, I was diagnosed 6 years ago. Like you, my partner didn’t want to,know, and still doesn’t! Having said that I have had six good years and life doesn’t have to end with diagnosis. My advice, go out and enjoy yourself s best as you can!