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DW is off for a girls night out with some extended family.  I took the kids on a hike, and when I got home and was starting to cook dinner for them I got text that she was getting questions from at least one person about the tremors they'd noticed.  She was asking what she should say.

 

My response was that if she couldn't ignore them to have them ask at the family reunion next weekend.

 

Hopefully this was able to be kept discrete and just between DW and one other person and not a big production with all the cousins and whatnot that were there.  My guess is it was some combination of my wife's aunt or uncle noticing at a previous get together.  Wish they'd just asked me directly rather than put my wife in that position.  DW's grandmother had PD, though it was the more typical later onset.  That aunt was the one that did the most to care for the grandmother.  Mostly I didn't want this coming up because I don't want them trying to be the medication consultant or otherwise pseudo-caregiver.  If that comes up I'll just have to draw some pretty firm boundaries, but I was hoping this was still several years away from being necessary.

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Stump - Unfortunately people do notice even though you may think you are hiding it well.  It's less awkward to ask your wife than you which is why she got the questions.   It's a fact of life that people are curious and will also offer unsolicited advice.  

 

About 10 years ago my uncle started to do the graveyard shift at work so he could be home with my aunt in the daytime.  She was diagnosed with Bipolar disorder and he thought she would harm herself if she were home alone.  Her night time meds knocked her out so he felt comfortable leaving her while she slept.   All my relatives were warned ahead of time to not ask him about the schedule change but someone always forget and will play 20 questions with him.   He felt people looked at him as a lesser man for working hours no one else wanted but in reality everyone respected him for being such a good responsible husband.

 

If you just let it out in the open everyone may go easy on you and you can also educate them on the disease.  Of course it's your choice so good luck either way. 

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Yeah, I'd figured it was that kind of dynamic going on.

 

I'd probably just let it all out on the open, but I'm 39.  I have potentially 26 years left in my career, and I'm working hard at moving up.  If I put PD out in the open that comes with a real risk of seeing a lot of opportunities go away, ADA be damned.  Once it's out in the open with family it will be ever harder to keep in from getting out at work.  Heck my wife's uncle (the same one referenced above) was telling the story of meeting a guy that knew who I was because of a presentation I'd given at the corporate HQ.  

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I was "noticed" at a family reunion; it was my parents 60th wedding anniversary in September 2010. A lot of family members thought I looked odd. My daughter told me to see a doctor when I got back to Texas. I was oblivious and was totally shocked by my diagnosis. I honestly don't know if I would have wanted to know at 39. Looking back, I had symptoms as early as age 27 or 28. My OCD might have done me in emotionally if I'd been diagnosed earlier. I had better coping skills at 57 than I had at your age, Stump.

 

Nobody in my family tried to be caregivers, pseudo or otherwise. They wanted me and my diagnosis to go away.

 

There is so much that is out of our control. I have learned not to stress about it. What will be, will be. I can be at peace and experience joy no matter what my body does or what people think of me. PD is a hard way to learn that. I'm glad I know it now.

 

You will be OK, Stump.

 

Dianne

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:x

 

Wife just called on her way home.  That aunt wasn't even there.  Apparently one cousin asked if something was up because something seemed wrong with me, like I'd had some unexplained cramping or whatever.  Then another said something like "Yeah, my hubby said he was kinda shaking last time he was hanging out with the guys".  She kind of was able to put it off the first couple times, but after a few glasses of wine another cousin brought it up in front of the whole group.  That was about the 3rd or 4th time and DW had to chose to either lie or tell them what is going on as it was no longer possible to make like it was no big deal.  I'm glad she didn't lie as that would have made this coming weekend get together even worse.  But now, knowing those folks, they're going to all tell their husbands, and Saturday when we're at the family party I'm going to have to probably field questions from a dozen or more people.  

 

Ah well.  It had to happen eventually. Like I said, I was just hoping for a few more years first.  I don't regret not saying anything up to now.

 

Just hope I can slow my mind down now and actually sleep.  There the Formula 1 race at Spa-Francorchamps to watch in 4.5 hours.  Looking forward to seeing if Lewis Hamilton can storm from the back of the starting grid to take the win.  A chance to drive a lap of that circuit (even if just in a reasonably priced car) is very much on my "Bucket List".  I only hope that when that time comes I have the ... ummm ... fortitude (PG version) to take the Eau Rouge/Radillion complex of corners flat out and never lift off the throttle.

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It would be weird if the wives didn't tell their husbands.  Everyone gossips and share news about everyone they know.  If you witnessed something odd with one of your relatives wouldn't you ask around for details and tell your wife about it?  Sooner or later it will become old news and you will start to blend in with everyone as if it's "normal"   Look at MJF. He is always joking about his PD so I'm sure you will probably do the same once you get more comfortable having this come out.  We all have something wrong so you have PD.  Like Dianne said you will be ok!  :-P

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Stump, in truth, absolutely nothing is under our control except our response to the events of our lives. Now you can relax and enjoy your race today. As for next weekend, you can just trust that you will be able to answer any questions cooly and calmly. You can always simply suggest they order pamphlets from NPF or MJFF if they truly want to learn about YOPD. The most important thing you can tell them is that you have an excellent MDS and that you are still the same wonderful person you were before your diagnosis. Which you are. 8)

 

Dianne

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after i was diagnosed at 48 - i'm 62 no2  - and having only the slightest of symptoms at the time so not in my wildest dreams thought i had pd, at the time i was playing men's soccer with my GP at times and he didn't notice my lack of arm swing or that i lost my balance at random times and fell funny - people would laugh since i would fall just planting my right food yet i could play back to back soccer games, 

i finally got over the shock but really didn't want to tell relatives face to face that i had pd but felt that i needed to tell them for their benefit,  so they would be aware of the early symptoms, and for my benefit so i could go to them for support if needed.  so i wrote them a letter describing my symptoms, the diagnosis process and what my progression might be like.  i'd rather they found out on my terms and with my instructions on how i wanted to be treated rather than having them find out and tell the world which i didn't want to happen.  

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Stump,

You're right to be concerned about the effects on your career. Let the family know if you want to, but insist on a social media blackout. That's where the cat gets out of the employer bag.

Waywrd1

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My having PD came out at a family reunion also. I'm slightly stooped and lose balance and almost pulled down the backdrop when taking our picture. We didn't make it to this years reunion. One cousin was asking how I was doing. We didn't stay away to hide how I was doing but we had to be somewhere else. 

 

Ah life. Got to love it. I didn't tell till I was asked. Family reunions are great for telling as most of the relatives only see each other once a year. You tend to notice  more when you see each other less. 

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"He needs to cut down on his coffee".  Hey, worked for years. :)

 

I've been on Synthroid since I was in middle school (14?).  One issue with too much is sweating and shaking.... so every time my PCP saw me, we would run blood work to check Thyroid levels. Everything was good so I remained on 200mcg daily.   Irony is I did great in the morning, and had to get in for something else and had an afternoon appointment. Her first comment was "how long have you been like this, and second was to refer me directly to a MDS she knew".  

 

MDS realized it was an odd mix of Parkinson's, Dystonia, and Essential Tremors.   I'm still convinced it is the coffee. :)

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Stump

 

This issue has been here often...to reveal or not.

 

After my experience, I would not reveal...especially in regard to your employment. Our battle is against the sterotypical image. We forget that image is still out there.

 

Now, if there is an obvious symptom..like stuttering speech...I say I have a neuro condition...its perfect. Everyone can deal with it...

 

The reality is, you do have a neuro condition and I am convinced 70% of YOPD will be reclassified soon...out of PD and into a specific area as research enlightens the causes.

 

Good luck, Stump. Wish you well.

 

NN

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Well my work knows. But I figured to be upfront about it. Of course I am 53 now and am not looking to move up. Just trying to hang on lol. Anyways my group at work has bee very supportive and gone out of there way to help, even when not needed. My boss is like if yo need anything let us know. So far so good. They did notice my tremor and a co worker asked so figured might as well spill the beans.

Edited by djack1012
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Most everyone at my work knows. I chose to disclose it. I work for amazing people and they have been incredibly supportive. As a matter of fact, my direct boss came up with the idea to do a car show to raise money for my local PD support group! It is being held in October. The owners of the company have gotten behind it 100% and have been really amazing about it! Every situation is different though so just be aware of that I suppose. 

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So, never mind work, there's a choice to make on whether or not to tell the 2 older kids about my PD before the family party on Saturday. I think I'll have to as there's little doubt they'll either be asked about it directly or hear the constant chatter.

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Olders are 12 and 10. Youngers are almost 5 and 3.5. Not worried about the youngers as they won't understand what it all means anyway. I had hoped to wait to tell the olders until they more like 14-16.

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Just my 2 cents,

 

I think telling your older children is a wise idea. Especially if you family is going to know. You can spin it with

PD is not going to shorten you life and I will be fine as long as I stay active and healthy.

 

From the sounds of your post you stay very active so I think you will be fine for many years.

 

Good luck stump.

 

Blessings

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Telling my 12 year old grandson was hard. He asked a few questions and I answered best I could. A few minutes later he smiled and said papa guess I'm gonna out fish you sooner then I thought... I busted out laughing and things have been fine since. He was the youngest of the grandkids I told.

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Stump,

 

Several years ago I bought a book that explains a parent's PD to a young child, I paid $10 for it. I just checked the price on Amazon and the same book, Who is Pee Dee? now sells for $171.30! More research led me to this link:  http://parkinsons.nm.org/childrens-books.html

 

I hope this helps.

 

Dianne

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Hi Stump,

 

My kids are 13 y-o boy an 10 y-o girl. I have not told them my diagnosis yet because my symptoms are very mild. I would like to keep it with me as long as possible. Just wanted to share this, my daughter saw me in this Forum  a lot prior being diagnosed, she told her two teachers that I have P.D.  I corrected her that it's  still under investigation, mom just has some pain and left  thumb moving when mom gets nervous. It seemed like they forget the whole thing over  last couple months. My boy does not pay attention. Perhaps you could tell them the symptoms which come and go and don't say  PD.  I feel regretted of telling  my parents. Whenever they see me , they always ask how is my hand? Any better ? Do this ? Do that? I m tired of answering the same thing :-P .

 

Once you disclose... the chance people not to tell others is %0.1 or less

 

PinkDaisy

Edited by pinkdaisy
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Guess I cannot understand why keep it so hush hush. When DH was Dx we first gathered his children out and sat down and gave them the news. I had ahead of time ordered all the free books that one can get right here on this website. Sat with them and we spent the whole day discussing, reading and educating them on PD. Then we did the same with my children. Most of the grandchildren are out of state, and for those near by they came with their parents. The only real young child is DH great grandchild. He is only 4 and for us to young to say anything to him, but when it is or if he does ask "Why does Grandpa Al shake or talk funny whatever," we will then tell him.

 

One has to at some time let out that something is indeed wrong, I would much rather know right away then be dumped on the info years later. It is not a disease one should be embarrassed with, yes it alarmed both DH and myself when first told, until I started to educated both of us on the disease. 

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I told my kids and step kids as soon as it was confirmed. They asked a few questions but as soon as they found out I wasn't going to die they pretty much forgot about it. They make the occasional tremor joke or whatever but I like that stuff so it's all good with me. 

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