Shirley and john

Continuing the discussion from Greetings!:

I am working my way through this site. Hubby diagnosed 3 weeks ago, we are both scared and after a private consultation twice and a scan. Lead to believe nitmdlity can return with drugs. So not what we both have read online. Side affects of drugs etc. For me, how to care, what mental state my husband may have, that I dont realise is disease orientated. I over course understand depression of the disease and furthermore the shock of the diagnosis. Grateful for any advice. Ask me any questions too.

Hi Shirley, welcome to the Community.

Very sorry to hear about your husband’s diagnosis. We have lots of information and advice for carers and family members on our website, which you may find useful:

We’d also recommend you contact our Helpline with any questions, as they’re able to offer professional advice on a wide range of issues. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team


Hi Shirley, from what I have experienced there seems to be two streams of thought after diagnosis
1 thank goodness I know what’s wrong with me
2 you have to be kidding me
I fell into the second category and alternated between being furious and scared. I think the important thing is to listen to each other BOTH of you need to process this. Don’t shy away from telling each other your fears for the future it. It’s a journey that is hard enough for both carer and “victim” without you both trying to do it as individuals

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Dear Shirley
When I was diagnosed last year, I was like a rabbit in headlights, and went round in a total fog ( God knows how my husband coped) for ages.
All I can say is give yourself lots of time, life doesn’t stop, just changes
You are not alone

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Thank you for replies. I needed contact. Has anyone read that Book (which cost me £44) about living and dying with Parkinsons? I started it last night and after an initial brief explanation of PD it went straight into the writers diary about her husbands incontinence and lack of bowel control. No lead up, no time element. It has made me so anxious. I wanted to srm myself with information to care for my husband. Not for awful time that I have to look forward to lack of toilet control and not recognising me. Surely there are lead ups to worse case scenario. I’m so angry about the costly book. Looking for views, help, understanding, advice, anything to stop me going under with this terrible strain. I know I’m not strong as I only lost one of my adult (40) twins in the last year. But I really want to be strong and that can only be with knowledge. Is it all bad???

Thank you