Telling loved ones


#1
how do i tell my children????? We are a close family unit and i know this will cause them pain - just trying to get my own fears to one side, yet i have to tell the two most precious people in the world - watch their worry, but try to put an upbeat positive slant on it ....anyone any ideas? curse this b****y disease!

#2
moonandstars -- me again! You're probably getting tired of me by now.

As I mentioned in another post to you, my diagnosis came one month before my son's wedding date. I felt obliged to wait until after the honeymoon to drop the bad news on my son and new daughter-in-law. And in retrospect, that was a wonderful bit of luck! I think it was good for me to wait, because it gave me the time I needed to adjust to the diagnosis myself before trying to help my only child accept it, too. When the time came, I was able to speak about PD without bursting into tears, as I did for a week after diagnosis. The only problem with this strategy is that you probably need someone with whom to share your feelings right now. I had not yet been widowed and thus had the best of confidants. If you have no spouse, close friend or relative, maybe my suggestion is useless. I remember I did need the comfort of sharing when in that initial period of what I called "mourning for my health."

#3
moon/stars

I would think that the age of your children is a very importsnt factor,as to when to tell them of your diagnosis, as it was with us.

Young, and they won't worry or perceive the long term implications; much older and they will maybe Google for themselves. Mid way twixt these is the where we did not know what to do.

Our daughters (twins) were 12 when OH was diagnosed, not any easy age at any time SO, we chose not to tell them immediately. We told our friends that we were holidaying with that summer before we told our daughters.Wrong or right??

#4
Hi,
I was only diagnosed in Jan 2013 and confirmed by DaT scan last week. Not sure how old your children are but I have 11yr old boy/girl twins and a 9 yr old daughter. My husband is a hospital doctor and I am an ex nurse and I have always believed in being honest with my children, however hard. They all knew I've been having symptoms and scans etc. Bottom line, I said PD is not going to kill me, just make life a bit tricky and slower. Much better news than the initially feared brain tumour. My mother died at 40yrs old, I was 13 at the the time, and I was treated in an honest, mature way at the time and have always encouraged independence in my children, never knowing what the future holds. Kids are more resilient than we think. Parkinson's UK produce some great leaflets and I have found the "My Mummy's got Parkinsons" storybook invaluable in supporting what I was telling my family. They have others for different ages.

Sorry if this is not relevant to you personally if your offspring are older. Good luck.

#5
thankyou for advice - J OF grey cottage - was hoping you wd message as yr situation seem similar to my own ,,,, my daughter gets married at the end of the month and my son has just old me he and his wide are expecting - i am lucky that i do have my husband who is supportive, but am conscious that he too is affect as our life is not going to be what we had hoped ....i still get waves of despair and find it difficult to understand that the diagnosis was given and i was sent away with a bunch of pills ,,,, a life changing diagnosis yet it wasn't even explained to me what the disease even was let alone a prognosis or support - again i say thank goodness for you guys as i don't know where i would be

#6
silverkins did you find it helpful being a nurse when given your diagnosis or did the fact that you were aware of what pd means for the future make things harder - i still canot gt my head round what i am going to be like in sat 15 years time!

#7
Hello Moonandstars,

I wouldn't worry too much about your future prognosis, as with evertything we are all very different therefore it's difficult to predict our futures with this condition.

I was dx 11 years ago and it's only now that my pd is affecting me to a point where it is having a complete lifestyle change. The way I see it is, that there is no point worrying, we have it, so why make life any harder by trying to and predict the future. Take the advice and the meds and take each day as it comes, things could be a lot worse.

I do hope that your worries subside, there really is 'life after dx'!

Take care

glenchass

#8
moonandstars, your health system sounds terribly cold! We in the U.S. are always complaining about ours, but it seems a lot more compassionate than yours. PD patients are always given a ton of information and the offer of support groups here.

The statement in your last post that struck me most, though, was that you and your husband felt that your life was not going to be what you had hoped. My husband and I felt the same way and talked a great deal about planning ahead. He was counting on being my caregiver whenever my PD grew worse and began to change my daily life. Well, you already know how that worked out! His cancer was diagnosed in Feb. of last year; he was gone in May. We just cannot anticipate life's surprises. So I think the advice from glenchass in the previous post is excellent: Try not to think too much of the future, but rather of reaching in the present some level of peace and acceptance. (More easily said than done, right?) When you do think of the future, remember what so many of us in the forum have said about PD: it tends to advance slowly. Granted, every case is different, but quite a number of us have come along 10 years or more (15 in my case) without really changing our lifestyle at all!

#9
Hi moon and stars, not sure if being a nurse helps, double edged sword, possibly. I'm somewhere between " ignorance is bliss" and "knowing too much"!!! With the Internet we can all be experts these days and worry ourselves sicker. I had suspected my diagnosis before being told by my neuro. In fact he asked me what I thought was wrong with me and I told him and he just confirmed my suspicions. I guess that helped because I'd had time to think about it before being told officially. As to the future, I haven't really thought that far ahead as none of us can predict the speed of progress of our PD , I'm just taking each day as it comes. Very busy with 3 growing children and winding down my business. Planning to start Zumba, Pilates and join a choir after Easter once finished my job. All in an attempt to slow the symptoms. Also I've bought Leki trekking poles to help retrain my arm swing when out walking the dog. Got to fight this thing with positive action me thinks!! Hope that helps.