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wearwear

How do you tell people that you have PD?

35 posts in this topic

I don't intend to keep my pd dx a secret but also I'm not going to announce it on social media. There are people that would want to know about it, but I'm not sure how to tell them without it sounding like self pity.

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Why tell?  The only people that know I have PD is family.  My symptoms are well hidden .

 

Dave

Edited by Daven

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My symptoms are obvious.

For work: I tell people on a need to know basis.

For friends, family, & social situations: If they don't ask, I don't tell.

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Most of my friends , family, and coworkers know about my PD. We had discussed the problems with my hand prior to all of the tests so when they ask how the tests went, I tell them. I am not a very secretive person.

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Most who see my tremor just guess it's PD but openly discuss with family.  A couple yrs. ago while taking dancing for PD classes, our local newspaper decided to do a feature article with pictures, little did I know it was going to end up on the front page of the weekend paper.  After that no need to tell anyone.  Do what you feel is  comfortable for you.

 

Patricia

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To my friends and family on Facebook I did announce it only once. I can't help what they think but my mention of it was on a positive note. Strangers aren't interested but making any kind of Doctors app i certainly mention it then. As for family I told them but again on a positive note. They will ask me about it sometimes but no lengthy discussions and simply tell them I'm doing fine and leave it at that. I don't get into the details mainly because there are no real details yet.

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I agree with Ken and Bill Clinton:  Don't ask, Don't tell!  If they don't ask, don't tell.  Everyone has problems.  For one, it might be diabetes.  Another might have cancer.  Another has family problems.  Someone else might have depression, or back pain, or headaches, or ADHD, or a child with a disability. 

 

The point is that we're not unique.  We have our problem (PD) and almost everyone else has their problem.  People have enough stress with their problems, they don't need our problems too.

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Yeah, I don't tell unless they ask. Like Daven, so far my PD isn't really too noticeable

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For my job, I told them right away. I've worked for the same veterinarians for over 20 yrs & most of the same staff almost as long. We're a small group & much like family. Some knew I was having issues (from their own observations) & were periodically asking about doctor visits. I suppose I could've side-stepped it, but I didn't see the point. They all have been quite supportive, so I'd have to say I made the right call.

 

I also told immediate family right away & didn't mind if they shared it with extended.family. I also told a few close friends & my husband's parents. Again, these were all people who knew I had problems from their own observations & would be asking anyway. The only person I'm trying to hide it from is my 88-yr-old grandmother, at my father's suggestion. She worries about everything & doesn't need that kind of stress at her age to possibly worsen her own health problems.

 

In your case, don't ask/don't tell may be the way to go. If anyone does ask, you can use that opportunity to tell them, should you see fit. I also agree with delivering the news with a positive spin. That should eliminate the self-pity factor. Good luck!

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Unless people notice my tremor and ask I will tell them..however it depends on who the "them" are.

If they important to me I'll tell them if not I shrug it off without details.

My family and inner circle of friends know...other then that it's no ones business...you just become the topic of the next happy hour!!

I don't take pity nor being the topic of gossip well...

 

D

Edited by Discovery
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I told close friends and family. Wearwear, I just kept it short and simple. Tell them what PD is, explain that it's not the end of the world, that it will probably progress slowly, that you have treatment options for the symptoms, and refer them to this or similar websites if they want to know more.

 

Why tell people? Well, for one thing to help my wife. If I kept it a secret, it meant she couldn't talk about my illness with her closest friends and that seemed an unfair burden to place on her on top of everything else she has to deal with.

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I told my family and close friends who I see all the time. I kept it positive said things like, It could be worse... I don't have cancer..... I'm not going to die... and ect. Most the time we don't talk about it. When I see my father or mother they ask how is everything, I give them a quick update and we move on.

 

Far as work is concerned, I told my direct boss and the team of manager I am part of. They have all been supportive and so far my disease has not created any work related issue.

 

I have always trusted my gut when it comes to who I should tell. So far it has not steered me wrong.  

 

Good luck

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I told the people closest to me Mom , Dad , siblings , kids , my wife has been to all my appointments . It wasn't easy .  then I also told the people I thought needed to know superintendent in charge of personnel and the foremen that I worked for . worked construction and went from job to job .  when the Dr  and I decided it was time to stop working because of the ridged ,cramped muscles and the balance and dizziness and fatigue  I was able to get my grandson to hockey practice at 5:00 pm where  before I had to get him a ride to the early practices ( He lives with us ) . I just told them my schedule changed . most just accepted that but the one's I know rather well asked how my schedule changed after 25 years . being closer to them I talked to them about it . But I don't bring it to a conversation unless I'm asked . like it was stated earlier everyone is dealing with something in there lives we don't now about . And I am also not one to want attention brought to me because people feel sorry for me . If it comes up and someone says I'm so sorry you have that , my reply is usually    it is what it is and it could be worse , I could have something that has a certain death sentence  the PD will progress but no one knows how quickly and if I stay active I can possibly control it to some degree . that is usually what I say . weather I tell someone that inquires is usually dependent on the relationship I have with them . if it's a person I barely know I guide the conversation in a different direction . Not everyone needs to know you will know who and when to say something by how you feel about the person and if you believe they have a need to know  ! hope that helps  >  Dan

Edited by Hunter Dan
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I shared it with my family, friends I see and collegues at work, as its obvious something is off. I don't take medication yet and the symptoms speak out clearly.

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I have Dementia with Lewy Bodies, so I'm a mixture of a lot of good stuff. I also have early onset Alzheimer's, but the Parkinsonian stuff is just getting going for me. The cognitive stuff has been going for a couple of years. I have a service dog. His vest has a patch on it that announces to the world that I have Alzheimer's and Lewy Body Dementia. I did this so people would stop asking me why I had a service dog. I also did it so people wouldn't call the police to report that a crazy man was wandering around behaving strangely. With my service dog, it is hard for me to find places or to get home all the time, or find my way out of a restaurant. I'm retired, so I don't have to worry about people at work or bosses.

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I've told some people and not others.  One I won't tell for as long as I can is my sister.  It's complicated, but suffice it to say we don't have the best relationship.  My parents know.  One of my dad's sisters knows (her late husband had PD).  Some friends know.  But I try pretty hard to keep it on the QT at work, and those I have told are aware I want a social media blackout on the topic.

 

Eventually I'll have to disclose, but I'm holding off as long as I think it makes sense to do so.

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I think the bigger issue is what you do after people find out that you have PD.  If you constantly whine about your problems, your friends and family will start moving away from you.  People don't want to hear constant whining.

 

Personally, when people ask how I'm doing, I always say "fine" and then ask how they're doing.

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I think the bigger issue is what you do after people find out that you have PD.  If you constantly whine about your problems, your friends and family will start moving away from you.  People don't want to hear constant whining.

 

Personally, when people ask how I'm doing, I always say "fine" and then ask how they're doing.

 

I know I've told the story before, but since the OP is new I'll tell it again.  When we lived in Phoenix we had a neighbor we called Fibromylagia Lady.  I have no idea to this day what her real name is.  The reason was that before even telling us her name the first time we met her she announced that she has fibromylagia.  And that her son has Aspergers.  She had let her diagnosis (and her son's) so totally dominate her life that it basically became her identity.  Everything was about her disease.  Needless to say we didn't associate much with her during the 2.5 years we lived there.

 

I only discuss my PD with those that ask.  The only exception is when I call my parents about something like an update from an MDS appointment.  That and if I'm having an issue I'll talk to my wife about it.  But even with my best friend I won't bring it up unless they ask.

Edited by stump
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Once my DX was confirmed. I told family right away, then close friends and then I put it on Facebook. I didn't want anyone having to carry a secret for me. I then told my employer. I work for a "smaller" company that is VERY family oriented and they have been great. Even helped me and my boss put together a car show this past year to raise money for the local PD Support group I am a part of. Anyway, each of us and our situation is different. You just have to measure where the people are at in your life on if they can handle this news and if it will cause problems with your employer or not. As for self pity or whatever, I shared my story to help raise awareness and it has helped and I will continue to do so, NOT for self pity however. 

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I've told immediate family, a few close friends and my boss thus far.  Everyone has been great about it.  I've been debating whether to post a FB post restricted to family and close friends.

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Instead of tremor, I have balance problems that make it hard to walk straight, though this has improved with a cane and Physical Therapy.  Coworkers were watching me walk and knew something was wrong, and worrying about me. They were relieved to find out I've been diagnosed and am getting treatment... and then several asked for the name of my MD specialist because they suspect PD in a family member.  

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Why keep it a secret? PD is nothing to be a shame of and in my DH case we told family and friends right away. When out in public and people would be looking at him as if he was drunk or other symptoms I would immediately let them know. In most cases there was never self pity but they wanted to know more about PD as it is a disease that seems to be hidden and many people have no clue. 

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Why keep it a secret?

Because not all of us trust our employer.

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Because not all of us trust our employer.

That is sad and there are laws against any discrimination.  I know they can do other things like put your office in the boiler room hoping you will just leave, but I wouldn't want to work for some employer like that.  I know some people have few choices, but would be too stressed trying to hide it on top of everything else.  Some companies actually want disabled employees.

 

In my case, I have to explain my ups an downs and the company division I am in is pretty understanding.  I guess I am fortunate to have the job I have.

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Aren't you actually protecting yourself by exposing your disease at the beginning?  It would be hard for employers to fire you for other reasons and not have it seem like it's not about your disability.

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