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When do you tell people your diagnosis?


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#1 Didi

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Posted 20 April 2014 - 06:49 PM

My husband and I are having to make decisions as to whether to tell people or not about his Parkinsons diagnosis. We have each told most of our families on both sides and a few close friends. We haven't told any of those people to keep it a secret, but we haven't really told too many outside our inner circle of friends and family. However some people are more perceptive than others and notice things. Tonight at a family wedding my husband was asked by a friend of the family what was wrong -- why was he so stiff - -he came and told me of their conversation and told me he kind of brushed it off and said he had a stiff neck or shoulder or some sort of thing - but she wasn't buying it. She came to me later and asked me. But I didn't want to tell her if he didn't want me to. My 17 year old daughter overheard the conversation and feels that if people notice and ask, we should be honest and tell them. She said enough people know that it will get around anyway why keep it a secret. My husband and I will be discussing further his feelings about sharing his diagnosis but I was wondering how you all decided when to share. When people started realizing something was wrong -- did you try to hide the real reason -- I mean my husband does have a stiff shoulder, it's not like he is lying, and it can be so slowly progressive it's not like everyone needs to know. My husband works with his brothers in a family business and his brothers all know so it is not a matter of needing to keep anything from an employer or anything.



#2 Beau's Mom

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Posted 20 April 2014 - 07:16 PM

This has been a scary subject for many. I had no idea that the symptoms people had been noticing for years were PD until after my diagnosis. I have always been one to wear my heart, my fears and my feelings on my sleeve, so it was no secret at all. I must admit that as I worked through the grief process the first two years, my feelings and behaviors were hard for my family to deal with. At least they finally accept that I wasn't doing it AT them. As for extended family who I rarely see or people who don't know me, their opinion is of no interest to me.

 

One thing I've heard people say is that when you announce your diagnosis, you find out who your true friends are. I agree with them, as was surprised at a few I wouldn't have thought would leave, did.

 

It is a totally personal decision. To people who truly care about me, my diagnosis doesn't matter. To those who don't or can't care enough to deal, I have had to let go of their judgment of me and not let it matter to me.

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#3 New normal

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Posted 20 April 2014 - 08:44 PM

I bought the idea that honesty is best. Reactions surprised me. I don't feel people treat me the same. However, I may be overly sensitive. Do over? I wouldn't tell if not necessary. I just tell people I have a neurological condition which causes me to tremor. That seems safe to them.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#4 Delta

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Posted 21 April 2014 - 04:11 AM

I tell everyone. The shoe salesman, the guy at the cash register when I can't get my money out, everyone who I impact. For me, it's liberating. I've been down the road with another medical diagnosis that I tried to hide. It ate me up from the inside out and I really lost 7 years of my life trying to hide something I had no control over that required brutal treatments. I lost the years from when my daughter was 2 -9. Yikes.
But it doesn't matter what I do Only what he feels comfortable with matters.

#5 PatriotM

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Posted 21 April 2014 - 05:48 AM

Healthy people don't want to hang around with people that are constantly sick.  It's just that simple.  If you want to be treated like someone who is sick, then tell people that you have PD.  What you can expect for your 'honesty' is to be treated like an outcast and be avoided.

 

I don't want to be defined by PD, therefore I've only told 3 people:  my wife, my daughter, and my sister.  I told them that I don't want it spread around and they haven't told anyone.  No one else knows because I simply haven't told them.  I don't feel like I'm 'hiding' anything or being dishonest, I simply am not advertising that I have a serious disease.  The last thing I want is to be defined by my PD!!!

 

In my experience, the vast majority of people walk around in a daze, consumed by their busy lives.  They will not notice your PD symptoms, unless they are extremely severe.  As proof of this concept, I know a gun rights activist that believes in open carrying her handgun, which means that this person carries their handgun in a holster without covering it up.  Even though she is openly carrying a large handgun (a Glock 22) that is completely visible, virtually no one notices it.  She goes everywhere like that, and you can count the number of people that have noticed her gun on one hand.  I often joke that she could wear her gun as a necklace and people still wouldn't notice.  If people don't notice a woman wearing a large handgun, they certainly aren't going to notice a tremor, stiffness, or poor balance (unless you fall on them).

 

My left arm shakes noticeably (although has improved since I started taking Mirapex) and almost no one notices (except my wife).  My balance is not good, but again people don't notice.  As part of my exercise program, I participate in Airsoft at least one day a week.  This happens at a very hilly outdoor facility that is several hundred acres.  I have fallen at least once every time I have participated.  Of course, my comrades notice that I have fallen, but simply ask if I'm ok, to which I always reply that I'm fine.  I'm sure that they just think I've tripped over a log or slipped in the mud.  I certainly don't yell out "I have PD"!   

 

As has been said, disclosure is a personal decision.  Just realize that if you do tell people, you will be treated differently and avoided.  



#6 christie

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Posted 21 April 2014 - 06:28 AM

Healthy people don't want to hang around with people that are constantly sick.  It's just that simple.  If you want to be treated like someone who is sick, then tell people that you have PD.  What you can expect for your 'honesty' is to be treated like an outcast and be avoided.

 

I don't want to be defined by PD, therefore I've only told 3 people:  my wife, my daughter, and my sister.  I told them that I don't want it spread around and they haven't told anyone.  No one else knows because I simply haven't told them.  I don't feel like I'm 'hiding' anything or being dishonest, I simply am not advertising that I have a serious disease.  The last thing I want is to be defined by my PD!!!

 

In my experience, the vast majority of people walk around in a daze, consumed by their busy lives.  They will not notice your PD symptoms, unless they are extremely severe. 

 

As has been said, disclosure is a personal decision.  Just realize that if you do tell people, you will be treated differently and avoided.  

 

That's more or less the ugly truth, with no sugar-coating....


-English is not my first language !

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


#7 Rogerstar1

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Posted 21 April 2014 - 09:59 AM

That's more or less the ugly truth, with no sugar-coating....

talk about sugar-coating Chriistie...nice edit job!  :razz:  :razz:  :razz:



#8 SherryKnuth

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Posted 21 April 2014 - 12:30 PM

I shared with family members first then I told close friends.  It was awkward at first because people want to give you sympathy and the attention can be overwhelming.  I asked myself if I would want my family & friends to tell me if they had PD or another disease.   I decided yes I would want to know so I could be praying for & supporting them.   It is definitely a personal decision that you have to be comfortable with.



#9 Didi

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Posted 21 April 2014 - 01:54 PM

I am really surprised and saddened by those of you who have had to deal with people wanting to leave when you told them you have PD. I am so sad that there are  friends or family members that would treat their loved ones like that and not want to be around sick people. What kind of people are these? With those kind of friends who needs enemies. I am so sorry that people have let you down like that and it seems much more sad than dealing with any illness, no matter what it is.

 

I feel awful to say this, since hearing what many of you have dealt with,  -- but I can't imagine any of our friends and families treating us that way. In fact we have already dealt with that somewhat, as I have said before I came down with a chronic illness a few years ago (Scleroderma/Lupus). No one has treated me that way. The biggest problem I had with telling people was just my personality-- I tend to want to be alone when I am hurting physically and emotionally -- I don't care for attention or sympathy, and except for my husband I just wanted to be alone. But as Sherry said I realized that if it was the other way around and a close friend or family member was hurting I would want to know and help them all I can. And so I was depriving them of the blessing, and also my husband and children were hurting and needed someone to talk to. I learned that I am not an island and I have to let go of pride and let people in. Some of my health problems were very visual and I couldn't hide it anymore anyway so I had to learn.

 

I actually have the opposite struggle in that people don't leave, but they are forever coming to me and asking how I am. I am not a complainer - nor do I want to lie. And when you don't have an illness that will go away it is tough to know what to say. How do you answer "how are you" when you don't want to go into all the details, or if you are feeling good you don't want to let them think you are cured and be surprised when next week you're in the hospital. My answer is usually that I take meds that are controlling things and I'm doing well at the moment, thank you. If I'm not doing well, usually tell those I am close to, if feel able. I don't tell everyone I know about my disease, but I don't hide it if it comes up in conversation.

 

Back to my husband. We spoke last night about the friend who had noticed my husbands stiffness and gait issues, and I told him she had approached me as well. He was surprised that I hadn't told her and he said he was happy if I told people, because he felt it was less awkward for them if I told, rather than him. If they hear it from him they don't  know what to say. Of course some people have difficulty and don't know what to say to the spouse either. So now I know that pretty much my husband is ready to deal with it as I do with my disease. If someone asks specifically what is wrong -- he wants me to go ahead and tell them it is PD. He's not quite ready to wear a " I have PD" T -shirt or anything. And most of the time it will just depend on our mood and the situation as to whether we will share.

 

Again, I just cannot comprehend family or friends not wanting to be around "sick" people. We all will get sick at some point in our lives. Many people I know have some sort of physical or emotional pain they deal with. It is all around us. Some illnesses are more invisible than PD and we don't always know what others are dealing with. I had to explain that to a young man in the grocery store the other day, he was complaining because he saw a young girl in her 20's using a wheelchair cart and she looked perfectly healthy. I had to gently point out to him that you cannot always tell from looking at someone what difficulty they are dealing with --there are many disabilities or illnesses that are invisible.

 

I feel so grateful to be surrounded by loving family or friends. It would never be a matter of not telling because they would leave -- for me it's more because of not wanting pity, or attention. I know deep down inside my problem was somewhat of a pride issue that I needed to get over (when I had to reveal my illness to someone). My husband seems, at the moment to be much more secure and told me he is fine with people knowing --I am realizing now he even seems to want people to know, for the most part. I'm so happy he is going into this with a confident attitude but I do realize there will be stages. I've actually been bouncing between grief/acceptance/anger - and back again-- as far as his PD diagnosis. I'm having a much tougher time with his Dx than I did with my own. I've decided it is much tougher watching someone you love struggle than dealing with it yourself. My husband always told me that about labor and delivery -- people always talk about what the woman has to go through but he always said it was worse to watch someone you love in pain than to go through it yourself. And now I can definitely agree with him! Oh how I wish I could make it go away!!!!!!!!!!!!!!!



#10 she-ra

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Posted 21 April 2014 - 02:27 PM

I struggle with this daily.  While I have shared with total strangers, I have told no one in my family except my husband.  I needed to grieve and accept it myself first.  Just not ready yet......


Sheila ^_^

#11 New normal

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Posted 21 April 2014 - 04:05 PM

I agree with PatriotM.

I think there is a different reaction to PD because of the lingering stereotype of a drooling retarded person in the corner of the room....and our recent "poster children".....while I admire them greatly...Michael J Fox and Muhammed Ali...are both in advanced stages...so they don't present an image that reflects most PWP. Quite frankly, all three images are what I envisioned when I got my dx....and continued to envision that until I came to this forum.

Here I have met professionals, young parents, educators, people who are actively engaged in life...very intelligent..and risk takers...hardly commensurate with the images most people think of as PD.

I wish others cd know all of you...then they wd not be reluctant to be "friends".

No...I have seen "the look" and again, I wd only tell close friends...and I regret having made it so public. Is this like "cutting off your nose to spite your face" ? Those of us who don't tell ....don't educate, and perpetuate ignorance. Hmmmmmm.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#12 Annikin

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Posted 21 April 2014 - 07:23 PM

I too agree with Patriot. I have told only a handful of people I needed to tell- for my sanity,  but I know once others know, those who care and those who could care less,  the way I am perceived will change and I want to stay as normal on the outside as I can for as long as I can - even if it is a form of denial- it is also self preservation. I have subordinate at work who will be passive-aggressive about it and no doubt use it to get my job. I know people who have no idea how to treat a seriously ill person and unwittingly say things like- i know how you feel-I have diverticulitis or allergies- they just don;t get it. Then there are those who overdo the concern- God bless em- they are the worst of all- I am not porcelain  and stop acting like i'm gonna die!    My very best friend, whom I have known for 46 years took the news in a way that made me feel like I had burdened her with something she just could not absorb- she texted me two days after I told her and asked her not to tell anyone and said it was too much to keep to herself and asked if she could tell just  one other person on so it would be easier to cope with. I understood and I knew and trusted that person so I agreed-eventually  I allowed her to tell her Mom too. I never though she's take it so hard. I made another  dear friend cry-  and I waited a year and a half to tell her. I guess i should be grateful they care so much that they took it so hard.  If you choose to tell others just be prepared for anything. Some folks will surprise you, other will not. Many will let you down. Once its out, its out- no taking it back so just be sure.   It is a personal choice for everyone. MJF wrote in one of his books that if you tell people who already treat you bad they will likely still treat you bad. If you tell those who treat you well they will likely continue to treat you well.  Just be sure you know the difference.



#13 Delta

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Posted 22 April 2014 - 04:08 AM

I know there are times when I cannot hide my PD. For instance I recently attended a family wedding. I can prevent wear off through 9 PM at night but after that I have no ability to stop wear off. I was successful on Friday night but not on Saturday night the night of the wedding. I knew my brothers in-laws because we all grew up in the same town but I don't know them well and have not lived near them in 20 years. When I could no longer walk I simply told people I have PD and everyone understood.

I have received the opposite reaction. People don't say wow your sick, people say wow you've done so well all day with PD. I saw you exercising at the gym earlier I saw you dancing all night you haven't had a problem until now.
I know for me I need to use my energy fighting the Parkinson's not fighting other people. I simply have
not experienced any of these negative stereotypes, maybe I'm just lucky.

Edited by Delta, 22 April 2014 - 04:12 AM.


#14 bjenczyk

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Posted 22 April 2014 - 04:57 AM

I agree with Delta on this.  It is truly a personal decision, and each of us will have individual reasons for disclosing little, or all.  I have chosen to be fully transparent, and for me it has been liberating.  Have I lost opportunities?  Maybe, but I have also found many people to be truly wonderful and supportive.  I work as a CPA, and it is less stressful for me to have people knowing what is going on.  I only mention it when asked, or when an opportunity comes up naturally in conversation, and I let the other person guide the discussion.  I enjoy the opportunity to educate and inform, but I don't want to be a bore or a one note conversationalist.  Several business associates have said that I have changed their understanding of PD, and I hope to continue to do so.

 

At this point, my family knows, my church knows, those I volunteer with know, most people I work with know, and many business associates know.  I have had no overtly negative reactions, and if I have been hurt by my disclosure I am unaware of it.  I am hoping that as my condition limits or changes my abilities that I will be able to respond appropriately so that I can continue to be productive.  Only time will tell.

 

You have to evaluate your own life and circumstances, but you should be aware that it is possible to live publicly and openly with PD and still be successful.  Do people treat me the same as they did?  Not always, but not in a bad way.  There is more consideration for some of my limitations, which I appreciate.  There is also an appreciation for the challenges I face and how I deal with them.  This also is a good thing.  I wish you well in dealing with your own choices, and I hope they make life better for you.



#15 Didi

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Posted 23 April 2014 - 04:26 PM

The more my husband and I have discussed this -- the more he tells me he is now ready to share his diagnosis openly. It kind of surprises me how he has accepted it so quickly, but I am sure it will vary from day to day. Neither of us can imagine what some of you have gone through. Patriot mentioned that "Healthy people don't want to be around sick people"  Have people actually said that to you? -- or is it something you are assuming. Those kind of people (who don't want to be around sick people) will find themselves very alone someday, because unfortunately, this world is full of sick people. New Normal said something about the stigma of PD-- of a drooling retarded person -- well most people I've talked to think of it more as a tremor and gait issue and don't even realize it could affect cognitive function and never have I heard someone thinking of it causing retardation, maybe those I've talked to don't watch enough TV.  And there are diseases with much more stigma around them than PD. I have a nephew with schizophrenia - now there is some stigma. I myself have neuropsychiatric Lupus, which before treatment caused me to have seizures and even behave like a lunatic. Thrashing around on the floor seizing and wetting your pants can be a scary thing for others to watch. Yet, I have not had any friends or family leave me or treat me badly. I used to feel bad for my kids (the youngest 13 and 15) at the time but now I realize how much seeing illness firsthand has made them more empathetic people. I guarantee you they will not grow up to be people like some of those  that hurt some of you so badly as you have been hurt, by abandoning the sick.

 

Yes, there are people who say the wrong things - -like over reacting or under reacting by comparing to allergies and diverticulitis (although I know someone who has a colostomy because of a perforated colon from diverticulitis and there are severe allergies that can kill you, or things like chronic hives that are unbelievably tormenting, even though usually those conditions are very mild). We can never know what someone else is going through because it is impossible to walk in someone else's shoes. And most of us have said stupid stuff -- I will never forget the stupid comment I made to a 14 year old friend of the family who lost her fingers in a farming accident. I can never forgive myself for the stupid words that ran out of my mouth -- all the while I was actually trying to say something helpful, I made things worse. But I try to turn that around for a lesson to myself when others fumble around for words, and try to realize that they mean well and I try to put the best light on others actions instead of the worst. Otherwise we might as well live on an island -- because there are imperfect people all around us -- with me admittedly the most imperfect. Many times when we talk about people not wanting to be around sick people - it can be because they feel bad and don't know what to say - we need to cut them some slack and put ourselves in their shoes - or maybe we can teach them how to react and what to say. Of course there is no "perfect thing to say" because everyone is different. What might make me feel better might be the worst thing to say to you.

 

I was surprised to hear my husband agree with Bjenczyk - My husband says he wants people to know so that they would cut him some slack and have more consideration for his limitations. -- I have to admit first hearing my husband say that made me a little nervous -- as I don't want him to give up, be enabled and not be a fighter. But I can understand he would rather have people know he has PD than to think he is just plain lazy and slow. Makes a lot of sense to me. When I first became ill I lost 40 lbs, was under 100 lbs at 5 ft 4 in and very close to needing a feeding tube. It was a while before I was diagnosed with severe gastroparesis and received treatment. Now those who didn't know what I had, instead whispered that I had anorexia. So sometimes letting peoples imaginations go might not be better than telling the truth.

 

I can definitely understand She-ra and not wanting to tell because of struggling themselves with the diagnosis. This is why we didn't tell for the first few months. And we are all different. For me it took much longer than that to accept the dx. For my husband he feels up to telling others sooner. And of course for some people revealing a dx could cost them their job and that is whole different story. I  am so thankful we don't have to deal with that. But being self employed means we won't have FMLA, workplace disablility insurance, retirement or other help when it gets to the point where my husband can't work. I guess we'll have nothing but Social Security. Unfortunately we don't even have life insurance, so that part of the future is a little scary. But there is good and bad in everything. It's best to try to make what good we can out of the bad.

 

Thank you all for sharing  your experiences with us on revealing your diagnosis. I hope you all get love, support and friendship from family, friends and caregivers who share the journey with you!



#16 Didi

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Posted 23 April 2014 - 04:44 PM

I just wanted to add something. We have a family in our church who have children with a genetic illness - 3 children-- yes unbelievably it took  until the 3rd child that had an illness similar to cerebral palsy for the docs to finally admit that there was something genetic going on. It is an extremely rare disease but with treatment can me managed. The first girl (in her 30's now) cannot walk, talk or use any of her limbs very well -- can' feed herself or write. She is very smart though and can use a computer. When you look at her you think she cannot think or understand and people tend to talk to her family members or husband (yes, she is married), but now that I know her, I make sure and talk directly to her and her husband interprets her responses (she communicates with her eyes and facial gestures),  The next boy in the family died of the disease, and the third boy was saved from death by this older sister -- who researched on the computer and figured out what it was that all 3 of them have. She found a doctor who treated this rare disease just in time to save her brother's life. It is this boy I want to share with you about. He is in a wheelchair and deals with rigidity and spasticity. He looks like he has cerebral palsy and has a hard time feeding himself and writing because he can't control his limbs very well. He can talk but it is sometimes difficult to understand but you get used to it. He is in much better shape than his sister but still cannot take care of himself in most activities of daily living. If doctors had diagnosed and treated him in the beginning he would be a perfectly normal, young man. Nevertheless, his Dad is determined to treat him as normal as he can. This boy is 16 now and for the last 10 years I have known him he is the life of the party. He is happy and cheerful despite his limitations. Adults and children all flock to him no matter where he is. He has an electric wheelchair and goes flying around on that thing taking all the kids for rides. He'll hook up wagons behind him and haul a bunch of them. He lives on a farm and even does things like drive small tractors. HE is always surrounded by a group of happy kids and amazingly does not get picked on or pitied - it is all because of his amazingly great attitude! I'm sure he has his down days. A 16 year old boy who has to have someone feed, bathe, and take him to the bathroom, I am sure has to deal with some pain and heartache. But he is a blessing to all he meets!

 

To look at this boy you would not think of him as "healthy" or "strong" but because of his attitude everyone loves him, and everyone LOVES  to be around him!



#17 Trying hard

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Posted 23 April 2014 - 06:17 PM

Didi,

 

So very well said!!!!!!!!!

Each one of us with or without PD is different, the people and family around us are all different too.  I can relate to saying stupid things just because I really don't know what to say, feeling soooooooooooo stupid afterward.  Eventually coming to my senses.  I think it's great that your DH is ready to talk.  It will do him good, and it will teach those around him about PD.  I think sometimes we are to afraid to take the risk, afraid of what might or might not happen, what we might loose.  We should I think, hold up our heads, and say Yeah I have PD, so what!  Some will join in the journey and some won't, but that's the way with everything.  I hope you're keeping a journal you have a knack with words and observations! 



#18 bjenczyk

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Posted 24 April 2014 - 02:52 AM

I may be misreading this, but sometimes I think we are afraid to accept the kindness of others.  As someone with PD, I want to live my life to the fullest.  I want to do all that I can, to push my limits, to have others push my limits, and to be productive all my life.  Will what this mean change over time?  It certainly will, but it will for everyone else, as well.   The question I ask myself, in light of my PD, is how do I want others to treat me?  Do I want them to treat me the same way that did before they knew I had PD?  No, I really don't.  I don't want to be patronized, I don't want to be limited, I don't want to be dismissed.  What I do what is for others who know me and work with me to help me to be the best that I can be.  If that means that they need to understand that as my PD progresses my voice gets quieter, then they can understand it is the PD and ask me to repeat myself.  Most people will simply be more patient given any limitations I might have.  If they don't know about my PD, and they aren't educated about some of its effects, they may simply get frustrated or not talk to me because they can't hear my replies.  

 

I don't believe we should ever use our condition to get a leg up on others, or to fish for sympathy.  Instead, in going public I am simply hoping that others will see that I can continue to contribute and add value to any work I am associated with, but that they may need to be a bit more patient in dealing with some impediments.

 

One area at my workplace that I see as a perfect example is my sleep pattern.  I wake up nearly every day at around 2:30, after having gone to bed at 9:30.  Because those that I work with know about my PD and its effects on my sleep pattern, I have been provided with access to a room to nap in during the day if the need arises.  In addition, I tend to start my workday very early (something I can easily do as a CPA), and I generally leave my office by 2:30 or 3:00 each day.  I'll come home, take a nap, and either do my own thing or go back online to do a bit more work.  Because people know about my sleep difficulties, no one complains about the hours I keep.  I continue to be as productive as I was, my firm benefits from my work, and I manage my PD in a way I can live with.  In my own situation this is one example of how being transparent has worked not only to my benefit, but to my firm's as well.

 

I hope that example helps to clarify what I mean.  So far things have worked out very well.  Having just gone through a grueling tax season, I know that if I had not been able to manage my schedule as described I would not have been able to function well at all. So far we are all winners, and I am optimistic that over time we will continue to be so.


Edited by bjenczyk, 26 April 2014 - 02:54 PM.


#19 marycarolyn

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Posted 24 April 2014 - 09:13 AM

bjenczyk…. that makes a lot of sense, and I think your approach is a good way to educate people, it reduces the gap, from the unknown, and helps people understand your behavior from a different perspective. It's true for anyone in any circumstance, really. If we have a more clear understanding of where someone is "coming from" their paradigm, then we can all work together more; feel less threatened and take others' behaviors less personally. In the workplace environment, you are forced to work under certain limitations and boundaries, so if people can learn to work together, I don't just mean work side-by-side, as in "parallel play", but more of an interdisciplinary or interdependent or inter-whatever-term-you-want-to-use - approach, whether it be because of differences in their learning style, their physical differences, changes in their health, whatever the circumstances, that's the way to be more productive, and creative, meaningful work, meaningful existing, meaningful co-habitating….improvisation, in all areas of life, is a great skill to learn and use … Unless someone is not behaving ethically, wanting to harm others, cheat, steal, physically harm, etc., then we should be more embracing of our differences, and learn from our differences, as well as our similarities

. Anyway… those are the thoughts I have at this moment after reading your post.



#20 MShep

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Posted 26 April 2014 - 09:32 AM

After reading the previous posts, it does seem that many are too worried about how others will treat them if they know they have PD.  Who cares?  What is important is how you feel.  If you explain from the get go your conditions and limitations due to PD, I believe most will not have negative feelings about you.  In my own experience after having PD for 11 years and people I know and interact with do not and have not treated me any differently that when I was "normal", whatever that is.  I have always had a sense of humor and continue to have one in spite of my PD.  If we can't joke about ourselves at times, and enjoy life, as best we can, then it would get very boring.  When I was diagnosed, it was not necessary to "tell" anyone about my disease.  As time passed and the symptoms became noticeable to me, I knew they were noticeable to others.  At that point, I had no problem "telling" people the fact's with a brief explanation as to why these symptoms are taking place, ending with the fact that medications have helped me extremely well. These comments are not meant to agree or disagree with anyone, but only my own observations about how I have been treated.  Keep a good attitude and show others that you are still the same person inside as you were before you were diagnosed.  PD I believe has more negative effects on us only if we let it.   Best thoughts for all.






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