When and what to tell people about Parkinson's

My husband has just been diagnosed with PD at age 61. He's got a really good attitude - along the lines of 's%@* happens, you suck it up and get on with it.' Our adult children know about it (one is a nurse and already had suspicions!) but I'm not sure when or what to tell extended family. The last thing we want is sympathy - but pretty sure that's what will happen.

Any ideas, suggestions, etc. This whole thing is so scary and I don't imagine it gets better. Right now I/we just feel so cheated.

13 Replies

  • Hi and yes you will go through lots of emotions. I was 56 when diagnosed and the diagnosis never leaves my consciousness. However remember you are still the same person.

    I just gradually told the important people in my life... family, close friends, employer, colleagues, other friends and acquaintances as I came into contact with them. Most people have been very good, they don't start every conversation with it, but are supportive. You will get the people who have just heard of the latest cure and those who tell you what you should be doing or not doing. There may be people who will make it into a drama and you will know how to handle them.

    Telling people helps you to come to terms with it yourself. There is no one right way of doing it. The two of you are the ones who know what is best for you.

    Keep smiling and remember to enjoy each day and the people who matter in your life.

  • I was 35 when diagnosed. We couldn't face telling people face to face (other than the parents/siblings we could tell face to face). We wrote them an email, with links to the Mayo Clinic pages and the Michael J Fox Foundation page which were the more positive and accurate sites and said we are happy to discuss. Links are on my blog (which you may be interested in) youngandshaky.com.

    People will be an amazing support, as will the Parkinson's Support Groups in your area. Yes there are a lot of "oldies" and there are many degrees of what state we are all in (which may or may not freak you out (apologies to the "oldies" :-) ).


    Happy to discuss one to one if you want to message me aj@youngandshaky.com

    Best wishes. And Your husband has the right attitude and attitude does matter, believe me.


  • hi, it is a shock when first diagnosed, and I suppose we ( or the doctors) really have no idea how each person will progress. I kept thinking the John Walker and Micheal J Fox both seem to still lead normal lives. the medication does help, but do ask about any side effects that may arise with any medication you take, sometimes the medication can cause more problems than the disease. Take each days as it comes. Family and friends have been very supportive and we have found most people have no idea of what Parkinsons is or how it affects people.

    We have been through a lot of issues over the last couple of years since my husband was diagnosed. We are now having to look at our future and maybe making some life style changes, moving to a smaller property.

    Good luck

  • Hi there,

    Great question, amongst the myriad that you will be asking.

    First thing to know is here's no "right" answer and you will eventually just feel your way into whats' right for you and your situation.. and it will also change, as do your circumstances

    You can tell everyone, some people or no-one. You can do it f2f, on the phone or via email (like AJ), or even use FaceBook. It may sound weird but I published a poem on my FB page as a way of bringing the conversation to me. And for me it was better to tell people (particularily in my work world) than have them look at me sideways and wonder wtf was going on.

    And yes you will get sympathy and advice and updates on the latest research (grrrrrrrrrr) all well intentioned. But your attitude to PD, and how you tell them, and how you deal with it will dictate most peoples' response. i.e. if your matter of fact and real and not down in the mouth they won't smother you. But neither should you reject anyones responses as they will all bring something to you

    This book was useful..and Anne is a kiwi.


    All my love to you and your husband.


  • I waited a few weeks or months before I told people and told those I told first that I wanted to tell others myself in my own time when the time was right for me and them Those Christmas letters or emails I found a useful means of telling people whom I don't see very often. Parkinson's is a part of my life but not my whole life and I like to make the most of each new day, keep fit, exercise, take my Sinamet and enjoy life doing pleasurable things.

  • I was diagosed last year - had turned 38.

    - Close family told first - As close family has dealt with a much more life threatening medical condition meant they were well able to deal with the news. One comment was 'You can live with that' that summed up our own point of view well.

    - Employer told - as for me failure to do so could end the job - legal responsibility to disclose safety related (or perceived safety related) issues. They have been fantastic - offering ongoing work and planning for when I will not physically be able to do my current job.

    - Friends found out when we saw them - I hated the idea of using facebook to announce the PD. Most asked if they could pass on the news and I agreed to that.

    If people offer advice or tell me about the latest greatest I say OK - It is their way of dealing with it and arguing with them just pisses both side off

    Everyone is different in how they tell and how they receive the news.

    Good Luck!

  • I was diagnosed 12 years ago at 68. We all handle this in our own way, perhaps I have been lucky in that PD runs in the family, like my maternal grandfather and mother and one of our sons. However I have found some people dont know what to say when they haven't seen you for some time. OK I've got PD, so what. Now I wear a name badge with "Parkinson's" above my name and it certainly breaks the ice. Hopefully it will also help promote P's awareness. I am persuading several in our local divison to follow suit, both sufferers and carers. From experience in other groups name tags are a great way to say you belong and whether I like it or not I belong to PARKINSON'S NEW ZEALAND.

  • Hi there i found this letter which summed it up for my family as i found it extremely hard to discuss my feelings in regards to parkinsons and explain what was going on, hope it helps.


    (author unknown)

    I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as the grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.

    Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's Keep talking to me. Ignore the tears. I'll be ok in a few minutes.

    Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends.

    My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's I hear you. I have the same intelligence, it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.

    Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.

    Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done everyday. Help me with them if you can.

    My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.

    Sleeplessness: I may complain that I can't sleep. If I wander around in them middle of the night, that's Parkinson's It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends and family. I want to continue to be part of life. Please remain by my side.

  • Hi Shaliegh, That leter just about says it all, thank you

  • Parkinson has come into my life.

    A most unwelcome guest.

    To overcome his limitations

    I'll try my very best.

    I'll ride my bike, exercise, walk and stand up tall.

    Which will hopefully prevent another fall

    Frustrations and challenges lie ahead –

    Like simply turning over in bed.

    Getting in and out is becoming a chore,

    Sometimes when I go to walk, one foot seems to be stuck to the floor.

    I have a satin nightie and a satin sheet

    It makes life easier and is a real treat.

    My voice is quieter so I have to think LOUD

    And when I speak, imagine I'm in a crowd.

    My balance is awful , my handwriting too,

    But thank God for the computer, I can still write to you..

    So, with God's grace, kind friends and family,

    I'll be able to live out my life quite happily

  • Hi yes its good to have a good attitude, I was diagnosed about 12 months ago, and not on any medication as yet, but considering it now, as they say its better than later, to go on it.

    I am 60 yrs old and very active, which is so helpful, with this PD. It was a shock at first, but there is lots of info out there. We are selling most of our assets to continue sailing which has been our passion for the last 15 years, so I suggest just get on with life, and if people really want to know, they can google it, if its a problem telling them, good luck!

  • Was interesting to get your reply. My first thought was that I made that post 11 months ago but the passage of time made your reply all that more valuable. I must say J has a better attitude than me - the diagnosis still clouds my thinking but I know I just need to suck it up. Have you read "Go Anyway - Sailing around the world with Parkinson's' by Lyn Foley? It's brilliant. The author and her husband (he was diagnosed with Parkinson's at 43) were just heading off around the world in their yacht when he got his diagnosis. But they decided to go anyway. Cheered me up no end.

    Good luck with everything.

  • Thanks for the author of the book I shall look it up, we have been over half way around the world on our yacht, but been home the last 3 years, and planning to go again, so the book should be helpful. Just keep positive, I have certainly had my moments as well. Thanks again, keep moving.

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