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how and when to tell my family, work, and friends


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#1 metfan31

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Posted 26 August 2013 - 03:48 PM

I must make it clear, as of today I don't know that I am officially diagnosed with PD and am certainly in full denial. Doc is having me take meds to make final determination.

My wife knows all the details, as does my best friend at work. I have yet to explain it to my kids who have something of an idea that I'm not well. I have not really told anyone else including my brothers (both older), my parents, friends, or any extended family (including in_laws).

I do not want to "cry wolf" to litterally hundreds of people (who happen to be the only people in the world who know or care about me) if this turns out to be something far less serious than PD. I also don't want to upset anyone (folks esp) unnessecarily. On the other hand I feel burdened with this secret every time I talk to someone I care about. I know we all have different family dynamics and relationships but did any of you have a similar expirence? My first instinct is to bottle this up until after my post medication follow up appointment, but each time I talk to someone I feel compelled to say something.

#2 Donald Ennis

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Posted 26 August 2013 - 03:56 PM

I understand that completely, I knew for sometime I had PD before I as diagnosed, I told no one except my wife, after we knew with some ceartianty I called and told my folks (they are both PWP also). I would say follow your heart and what feels right in this situation, but straight forward and say "Look the doc thinks it is this, but we aren't sure yet?" this might help to eleveate some of the sting to others. As for Kids I wouldn't tell them until I knew more.

#3 someone

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Posted 26 August 2013 - 07:06 PM

this is totally a personal decision. What's right for anyone on this forum may not be right for you. for me, i chose to limit to a VERY tight circle (wife, boss, pastor, doc, one friend recently). I was dx over 1 yr ago. I chose this for two reasons: 1) no upside to me by more people knowing (I don't want pity, nor do i want anyone making assumptions about what i can or can't do... and 2) no upside to them by knowing (they'll just worry). I've decided for me i'll open up when i must, when it is more obvious.

your situation sounds different. if your kids know, maybe others do too. If this network of 'others' is supportive of you, maybe you'll get positive emotional support.

regardless, i'd wait until you have firm dx IMO.

from your post, you sound like a person who likes to share, so if that works better for you than bottling it up, then do what's right for you. There is no wrong choice here as long as you make it based on what you think is right for you.

hope this helps you....

#4 bjenczyk

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Posted 26 August 2013 - 07:33 PM

Just to show the flip side, I was diagnosed around 18 months ago, and I have been very open about my diagnosis at work, at home, and at church. I don't walk up to people and say "Hi, I've got Parkinson's.", but it if comes up naturally I tell people I have the disease. For example, I have become active in the American Parkinson's Disease Association, and when people ask why I will tell them that I was diagnosed, and I want to do what I can to help others with PD. At church, I serve as an elder, and I express my appreciation for all that I still have, and all that I can do. Letting people know gives me an opportunity to encourage others that would not be there otherwise. My family needs to know, and I cherish their support, and the humor we share which helps me to maintain a positive attitude.

The hardest situation has been work, but that has gone well. I am a CPA, which is a very high pressure profession. When I am under stress my symptoms exhibit more, so, because people know of my PD and I have explained the stress response, they understand that when I shake or my voice sounds shaky, there is nothing "wrong" other than I can't hide stress the way that many others do. I have also found that my employer is very accommodating to my needs. I wake up every day at 2:30 or so, and I go into work early since I am up anyway. If I need a nap during the day I have been provided a place to go, and because I get in so early I can leave early as well. If I had not told them (which I admit was a risk, but a calculated one) I would not be able to do some things that have helped me to deal with PD in a work environment. This is not everyone's story, but it has worked for me.

Only you know the character of those around you. I don't seek, want or need pity, but I do want to encourage, inspire and educate. If others don't know, then I can't do that. And by doing that, I find that I can accept my condition more easily; I choose to turn a negative into as much of a positive as I can. I don't know if I'll be able to keep this mindset as the disease progresses, but my personal hope is that as my condition worsens I can be even more encouraging to others. It is your choice what you do with a horrible situation.

One last thing - I agree strongly with those who advise waiting until you get the diagnosis; you don't want to let others know and then have to take it back.

Hope all goes well with you, and that my contribution helps with a different perspective.

Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#5 Prospector

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Posted 26 August 2013 - 07:52 PM

Yes waiting for an official diagnosis,whatever it may be, would be best I think. I like the suggestion of saying that drs think it may be this but aren't sure yet approach if you really feel the need to speak about it.
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#6 RNwithPD

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Posted 26 August 2013 - 09:34 PM

In my experience, no one except my immediate family really cares that I have PD. In fact, because I don't look like Michael J. Fox, most doubt that I even have it and their eyes glaze over if I bring it up. So, for me, it doesn't really matter if I talk about it or not except that I try to educate those around me a little at a time and perhaps increase PD awareness in the process.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#7 Mihai

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Posted 26 August 2013 - 09:35 PM

Hi metfan31,

Our situations are all different, so ultimately you'll have to follow your heart. With that said, I think you need your family and friends not just at the PD diagnosis and beyond, but also during the pre-diagnosis phase. If they are loving and supportive, they would want to know and have the opportunity to support you through the whole process. If it ends up to not be PD, so what? Then they can rejoice with you on that fact and continue to support you as you continue your search for answers. My advice is to always be honest. It's usually better than leaving people in the dark only to guess what the problem is. Good luck to you...let us know what you decide to do. I fully believe that you will do the right thing for you. And only you will know what that is.

Peace and blessings,
Mihai
Diagnosed in 2001 at 33 years of age

#8 metfan31

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Posted 26 August 2013 - 10:27 PM

Thank you all for the wonderful advice. My issue besides an unconfirmed Dx is honestly my Mother.

I love my mother, other than my wife I don't think anyone in this world could love me as unconditionally as she always has,.

I need her support, but I do not want to cause undue stress and I certainly do not want to extend this beyond the people I talk to on a regular basis. As many of you said we all have our own story and situation, with PD, and other aspects of our lives. All you advice has been helpful, I think for now I will play it by ear, and if I am compelled to tell Mom, I'll try to express how important it is to me to keep this completely private until I have confirmation without offending her.

Wish me luck.

Edited by metfan31, 10 September 2013 - 05:41 PM.


#9 christie

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Posted 27 August 2013 - 03:24 AM

If my mother was the freaking-over-everything-type I wouldn't tell her ! Not until I knew for sure...100% sure...But I would tell my brothers...my close friends...that's their "job" right? To be there for you when you need them? They are your people ! They love you! "Cry wolf" should be their favorite game !! It doesn't really matter if it's PD or not. You don't even have to give a name to your symptoms. just tell them you seem to have a movement disorder, and you are in the middle of the diagnosis process. And that you are scared. be truthful to those who are close to you. Be yourself. You are going through a rough time (PD or not) and you obviously need their support. And you need it now, not tomorrow. Otherwise you wouldn't feel compelled to tell them. Right?

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#10 bjenczyk

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Posted 27 August 2013 - 03:56 AM

Metfan, you have added some important perspective, and highlighted how individual this decision is. If I were in your situation I would be very hesitant to tell anyone who would act the way you describe. The decision to "publicize" or not has to be yours, and how it is done also has to be sensitive to your needs. I think you will eventually need to talk to your mother and mother in law, but it should be done in person, I would hope that by discussing it face to face you could explain why you don't want your diagnosis (when you get it) blasted all over facebook. I have seen death announcements made on facebook outrace family members finding out about an accident that had occurred, and it can cause hurt and shock.

Good luck whatever you decide. Only you can know what is right for you to do given your situation. I hope you make the right decision and that those close to you respect it.

Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#11 sarahjo

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Posted 27 August 2013 - 12:00 PM

the ppl on here are right, this issue of to tell or not to tell is such a personal choice, my decision to tell was only to my children (who are older 12,18,23) a few closest friends and my parents, other than that I didn't even tell my brothers at first, not because I was hiding from it but the fact I have one brother who is all about himself and he over reacts (I have come to realize its only because he cares so deeply for his family and friends and he wants to help just doesn't know how or what). I just recently did tell my one brother because I didn't have a choice, It was at fathers day dinner and we had a family get together, I was having an off day so had to use my cane, I almost didn't go because of being embarrassed (my mom said that I would be ok and she would be there with me, she also said I needed to face my fears so I wouldn't end up falling into depression over this and start withdrawing) (moms are so wise most of the time) anyways sure enough I get there my one brother freaks out, and here came the two hundred questions, he cried and then got me crying etc. you know the scene, I sat everyone down (just like the books we have on line about telling family and friends) (????? light bulb just went on go to the npf store here, and there are free books I got about six information books, from how to tell your family and friends, to understanding pd, etc. check it out, they are FREEEEEE and no SHIPPING either) but anyhow now that I am rambling again, its very personal who and how you tell someone, my church family believe it or not (other than our pastor and wife, and verrrrrrry close friends of ours) was just told a week ago. its been four almost five months now since I was dx. I too was dx. through take this pill and if it works.... listen to your dr. and also remember there is no right or wrong way to tell others, its something we still have control of.... one more thing and I am done. I again I say I chose to tell certain ppl at grocery store I go to, and pharmacy for this reason and this reason only, if I am having a really rough day and cant get my money out or card out of my wallet they understand I am not playing around, and they have been amazing I try to go to the same ppl when ever possible and to the same stores unless my children are with me and they can help me. Best of luck, and remember you are in control of when things come out of your mouth, and how they come out. Bless you and your family through this transition.. sarahjo

#12 metfan31

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Posted 04 October 2013 - 07:33 PM

OK update time:

Thursday I received the Dx officially which I pretty much knew would happen since the Sinemet has truly made me feel almost "normal" again.  About a week prior to the Appointment I started expanding my circle of trust friends and family I felt I could trust and help me with my pending Dx.  The day before I told my kids and the evening after I told my parents.  Honestly none of the responses I got were what I expected. One of my better friends seemed shocked and almost uncomfortable by the news.  Quick to offer any help I may need but ever happier with a change in subject.  My Father who I expected to tell me my Doctor, myself, or both are crazy, was very matter of fact and just wanted to know the story behind my Dx.  My Mother who I expected to be hysterical was anything but, she seemed as if it was not a big deal at all and was very calm and had very few questions.  Perhaps she was trying to be a supportive parent and put on a brave face for me or she truly has no idea of the obstacles in my road ahead.  I want to believe the former but I think it is the later since conversationally she talked about "how well Michael J Fox is doing" and that most of what is wrong with Mohammad Ali is from "being hit in the head to many times and not PD."  When I told her the line about Ali was a common misnomer she just laughed it off.  I don't think she has an accurate idea of PD and what it does, but perhaps it is best she doesn't right now.  After all ignorance is bliss, who am I to ruin a mother's bliss.  My kids on the other hand seemed a little scared by the idea of me being sick, but once I explained that I am not dying from this or anything else any time soon they were okay.  They had very few questions, but my oldest seemed a little too eager to have the opportunity to  push me in a wheel chair some day, to which I told him I'm getting one with a motor because I don't trust him.... 

Basically all the stress I put on myself worrying about how others would feel about my condition, I should have focused more on not stressing myself.  I am the one who has to live with PD no one else (well and all of you) for the first time in a long time I think it is time I put my feelings ahead of my friends and family, at least as far as my own health is concerned.



#13 Brad24

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Posted 05 October 2013 - 02:20 AM

Metfan31, I know exactly how you feel. Right now you need to focus on you and your well being. I am 43 DX'd in February of 2012. Had been having problems since 2007 and was repeatedly told I was depressed and needed to be on anti-depressants. In my heart I knew it was not just plain depression. In 2011 when I developed a tremor the doctors really changed their tunes.

Anyway, I am sorry to hear about your DX. I know you will probably have people say " I bet it's a relief to at least know now." In some ways yes it is but in many others it is not. I had a really hard time with my DX for months. I did not want to see family friends or co-workers ( I am a State Trooper). Some friends of mine were eager to help and be supportive others did not want to talk about it and ignore it. Everyone deals with this type of thing differently.

I wish you luck during this time my friend. It is ok for you to be a bit selfish right now and cope. Prepare yourself for your journey ahead. I do not know if you exercise but I believe that is my saving grace of delaying progression. My MDS told me that too. She was very impressed at my last check up with my status. If you are new to exercise seek help and start slow. I started yoga shortly after my DX and it is great. Consult your docs about exercise. I was really into exercise prior to my DX. I learned that I had to tame things down and my MDS gave me a lot of help.

This is just my two cents and I hope I helped you. I am not saying everything i said here is right it is just what has worked for me. If you ever want to send a private message that's okay.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#14 chelle

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Posted 05 October 2013 - 09:01 PM

Metfan31,

I had similar reactions. People say that's just where u shake huh??? . Really... idk what to say to people. My close friends don't really talk to me cause they say how r u and I reply shitty... now its just, "u know my new normal". They don't want to here how I am really doing. I've learned that venting is necessary. So feel free to do so! My dx has really taught me who is most important in my life. Just believe in yourself. I'm only 31 I used to say I'm too young for all this. Now I realize my dx has made me a better person. It still sucks but I will be alright and so will you. I still pray for u because the next year will probably be your hardest.

#15 Prospector

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Posted 05 October 2013 - 11:29 PM

Sorry you are in the club my friend. The first 3-4 months were pretty strange for me but I've come to accept things for what they are. Then again that may be the antidepressant talking. :). Hang in there and ride out the initial storm. I promise it will pass.
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#16 PBar

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Posted 07 October 2013 - 10:01 AM

Pretty much all my friends, family and coworkers now know.  It's tough to hide after ten years.  I will say that the people I appreciate most are the ones who can laugh about it with me.  My friends who were asking if they could hack the program on my DBS so they could set up a website to allow people to manipulate it, are the ones that I consider my closest friends.



#17 afroney

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Posted 17 October 2013 - 10:20 PM

Metfan31,

I had similar reactions. People say that's just where u shake huh??? . Really... idk what to say to people. My close friends don't really talk to me cause they say how r u and I reply shitty... now its just, "u know my new normal". They don't want to here how I am really doing. I've learned that venting is necessary. So feel free to do so! My dx has really taught me who is most important in my life. Just believe in yourself. I'm only 31 I used to say I'm too young for all this. Now I realize my dx has made me a better person. It still sucks but I will be alright and so will you. I still pray for u because the next year will probably be your hardest.


I know how you feel. I'm only 28 and somewhere in the early parts of stage three. I very rarely have a visible tremor, but have a hell of a time walking. There's no hiding my symptoms, so I just tell anyone about my disease who asks or looks puzzled as to why a perfectly healthy looking 28 year old man is lumbering around like he's 80.

Most people are confused, because of the lack of tremor. Oh well...

#18 Annikin

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Posted 27 November 2013 - 09:37 PM

Metfan31-

Sorry you are officially part of the club. Tomorrow is my year anniversary from my diagnosis. I have told only 9 people to date and only one of those is family. It is truly your choice and like any choice in life you make you have to live with the consequences. I think you are pretty brave and hope all goes well for you. At least the stress of hiding it is over for you.  If I did not worry about it costing me my job in the end, I'd have no issues telling  my co-workers, then  I  would become openly involved in the PD cause like bjenczyk (above) has- more power to you bjencxyk!! For now I share a lot of  concerns others have expressed- otherwise my screen name would be my actual name and not Darth Vader's real first name.  For the time being not telling others allows me to maintain some sense of normalcy. In a PD book I read it gave some very accurate advise if the 9 folks I have told are anything to go by: People who treat you well before your diagnosis will likely still treat you well, Those that did not treat you well will  likely continue to not treat you well.  All the best metfan31






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