Hi everyone, I’m Phil and my wife has recently diagnosed with PD that the specialist called “Tremor Dominant” Parkinson’s.
Her symptoms are very mild at present and it is very early days but I have joined this forum ahead of her whilst she processes and gets herself to a point where she feels able to share her thoughts and fears.
I would not describe myself as a ‘carer’ of course; that may be some time away and I will continue to encourage her to join this forum in due course but she is not the type to talk about things and at the moment “doesn’t want anyone to know”.
I am sure that others here will identify with that but I believe that we must embrace the power of talking to others, for all sorts of reasons.
Hi Phil,
You, and your wife when she is ready, are happily welcomed into our little forum community. You’ll most certainly meet a variety of viewpoints here, a wealth of experience and wisdom, and a network of support comprised of wonderful people from all walks of life. You can also find archived discussions on our website via the search bar. We recommend having a look around the site, which we keep up to date with the latest research news, fundraising ideas, and loads of informative writing on a variety of subjects. This section on new diagnoses might be a good start. Added to that, we have a free and confidential helpline staffed with advisers who can help with everything from finding local resources to medication questions. You can reach out at 0808 800 0303. We’re here to help, one way or another, all of us, and we look forward to having you part of the conversation.
Best wishes to you both,
Jason
Forum Moderator
Hello Phargrea and welcome to the forum.
I have read your post several times while wondering what I could usefully say that will help. On the one hand you seem to accept your wife does not want to particularly talk about her diagnosis nor does she want anyone to know, on the other you have joined the forum ahead of her, which presumes she will come on board later, because your view is to embrace the power of talking.
Obviously I only know of you and your wife what you have written but you do seem to have different approaches and I think it may be worth making a few general points for you to bear in mind which may help.
I was diagnosed nearly 13 years ago and right from the beginning decided to be open about my diagnosis. I knew there was little point in pretending all was well because as much as I could say that over and over, I knew that a lot of communication comes from non verbal cues and chances are others were picking up on this and may not have known what is wrong but clearly were aware something was going on. Being open about it stopped all the second guessing and gave me the opportunity to be clear about how I intended to manage my condition. That was my way. It was right for me but equally it is not everyone’s way and some prefer not to divulge their diagnosis for any number of reasons and this is equally valid. There is no right or wrong way to managing a condition like Parkinson’s, only the way that is unique to the individual whatever that is.
You are clearly acting in your wife’s best interests as you see it by joining the forum as you put it ‘…ahead of her whilst she processes and gets herself to a point where she feels able to share her thoughts and fears.’ However from what you say of your wife this doesn’t come naturally to her. My feeling is that you will need to ‘box clever’ and not put too much emphasis on the forum which may put her off. Instead try taking a low key drip feed approach. Mention it in passing. Show her something you read, tell her briefly about the difference being on the forum has made to you. That sort of thing. You need to be prepared that this could be a slow burn and you will need patience. I know it can be a source of frustration for anyone involved with someone with Parkinson’s if that person doesn’t follow the suggestions being made when to them it is obvious it would help but people in the general population don’t always follow good advice, why is there a presumption that people with People with Parkinson’s will.
I think the forum at the moment is more for you, your education and information about the condition. Your wife will join you if, as and when,she is ready to do so
Tot
