[Conductor71]

Hi,

Maybe this sounds like a ridiculous question to some of our more seasoned members, but there are those of us who are newly diagnosed and struggling with the decision of who and when to tell that you have PD.

I feel conflicted because in one sense I feel that I am burdening friends in a way (sound familiar, Rick?), but I also need to be able to talk about it freely with non PWP. Does that make sense? Even though they don't really understand what am I going through, I want them to know; it's now a part of me- right now it might be a scary shadow I see cast on my wall at night, but in reality, it will become more like a puppeteer with me, dangling center stage, from the strings. I don't want to wait until that point.

There are also close family members that I cannot yet tell, but that will work itself out in time. My main decision centers on when to tell friends, acquaintances. etc. I'd love to just make a dramatic announcement on Facebook or something, largely to spread awareness that PD is not necessarily a disease of old age. I can't; however, for I have professional connections and cannot "come out" for fear of losing my livelihood.

What makes me feel most vulnerable is the reality of telling some of my dear friends I've known since grade school; they really know my essence, not the facades I've learned to hide behind over the years. It's when I think of them; the freedom, the laughter, that incredible spirit of innocence, the infinite possibilities of becoming, that connect us, I feel most profoundly sad about having PD.

I most of all do not want pity, and I don't know how to avoid that.

Anyway, this is a deeply personal question and decision; if anyone wants to share some practical tips or even opinions that would be appreciated. If you want to PM me-that's okay too. I'd just like to read of some experiences that you have had to help me piece together how I might approach this, or to just even read that some of you feel the same way. All or any of this would be helpful.

Laura

[indigogo]

Laura - Funny that you should talk about old friends and PD .... I went to a memorial service last week for the father of my best girlhood friend (since 4th grade) - he was also my high school math teacher. It was a wonderful gathering of my oldest friends - we also get together every year to watch the Academy Awards. I still feel so very comfortable around them; no other people know me so well; none have been more concerned yet still able to see ME, and treat me as they always have. These aren't friends that I see on a weekly or daily basis; only yearly and on special occasions. They have never let me down; I love them and know they love me!

[AnnT2]

There are two possibilities here. One is that you have visible symptoms that are obvious to others, and so they already know without any announcement from you. The second is that your symptoms are not that apparent. This second scenario is better because you can tell them and since they do not see any signs, they can show honest surprise and probably feel more comfortable asking questions.

If your symptoms are apparent, just say, "As you may have noticed, I have developed a tremor, and I have been diagnosed with Parkinson's". In fact, you can say this either way. I find that once you tell people they ask nothing but discuss it among themselves. That really annoys me, but that is human nature. Recently I went to a party, and person after person in a solicitous manner asked, "How ARE you?" (Emphasis on the word "are"} Finally I became exaxperated (I was feeling fine) and asked why all the sudden concern? It seems someone told someone who told someone, etc. that I was doing very poorly (I am not) and they were shocked that I came to the party with few if any signs of deterioration. The interesting thing is that I had never spoken with any of them directly about PD and they had never asked.

I have a theory that people sometimes feel a sense of safety if they know illness has struck someone they know, as if that somehow means the gods have been satisfied with the misfortune of the sick person (in this case me). and they (the temporarily healthy) are in the clear.

I usually accompany my revelation with a statement that I am doing fine and they shouldn't worry.

Good luck.

Ann

[LindaH]

Laura,
This is not a ridiculous question at all. If something is worrying you, chances are there are many others who have felt the same way.
I think how and when you tell friends depends on the individual. Some of my friends i told right away, but others i waited for some time, until i felt more comfortable myself talking about it.
I found a good way of bringing it up was asking them to help me advocate for research funding -- at that time there was a campaign to pass the Udall bill. I didn't want their pity and I didn't want them to worry about me. I found that asking them to do something positive to fight the disease, just as I was doing helped both of us. And since they are scattered around the country, many more politicians heard from their constituents about PD research funding.

Please keep on asking questions,
linda

[chasmo]

Laura;

As conflicted as you sound about people knowing, I'd suggest you tell no one. You can always tell them later. In tme your PD will become impossible to hide. Since you have not had PD for that long,you are a lot more aware of your PD than those around you.
Work is a unique situation. I found that all my co-workers supported me totally. My boss was absolutely wonderful. S0 don't sell your co-workers short. If you give people a chance to be supportive, they will be.

Charlie

[Jomar]

I think everyone should have a few very close and trust worthy friends or family members to talk to about any condition they might be diagnosed with.

And hopefully they will respect your wishes if you don't want it spread all around to everyone yet.

Trust your gut about who will be in your "inner circle".

One thing any condition does is sort out the superficial friends from the true friends.... the true ones are the ones you want to be in your corner.

[jcitron]

Laura,

This is one of the toughest decisions to make, but it's also a part of the personal healing and acceptance process that we go through, or at least this is how I see it.

When I was first going through the unknowns, the horrible tests and medication-level experiments, the only people that knew were my immediate family, and they acted like I was "normal". This made me feel good inside because this meant that they didn't really notice anything.

At work I ended up telling my manager only because I was out more than I was in for nearly a year. He had to know because he was beginning to question my mood swings, my tardiness and my frequent Monday's off. This was when I felt it was time to let people know what was happening outside of my house because I now sending out the perception that I was a drug addict or drunk that needed Monday's off to recuperate. What was happening, and you probaby have this too, is the fatique. That horrible insurmountable fatigue that hits and takes a weekend to recover from. Anyway, once my manager knew, he thought different of me, and explained that it was important that I told him what was going on because of the perception that was being made about me.

I ended telling people at piano party I was attending. I had to stop what I was playing and take some Sinemet because I had one of those off, stiff cramping times and I couldn't play anymore. The biceps turned to daggers and I couldn't move my arms or hands. I really didn't have to say much to one person because he recognized the symptoms right away. His wife had one of the Shy-Drager forms of PD-Plus and had been going through the medication route. She had passed away recently from it, and he told me that the medication didn't work for her if barely at all. It was because of him, that I found my current neurologist. The then current neuro I had was giving me the Sinemet to see if it was what I would need. After that incident, my meds were increased another dosage and that helped for over 6 months.

Now I don't go and tell everyone I see in public. Like I'm doing a "Look at me, I have PD!" I only tell people that I feel it is necessary, or have known me for years and can tell that there is something different.

As part of my acceptance of the condition, it has helped me face the reality that there's not much I can do about it, and go about my life the best I can.

John

[Bob Dawson]

Very difficult question. I told no one but loved ones for a number of years, and then it started to become obvious, so I told everyone. I have clients that I do contract work for, and I tell them all and they all read my website about PD. But in the past two years I have run into something that is new, at least to me: bigotry or fear or suspicion based on the "science" that says our disease or the drugs cause some of us to embezzle money to go gambling in Vegas; addicted to sex and chocolate and drugs and gambling and booze. Therefore not to be trusted. It's been in the newspapers a lot, and I don't know if it is just Canadians whose are too frozen in the wind-chill to think straight; but it has reached the point where competitors call my customers to tell them that they should change suppliers because you can't trust a Parkie. We've gone back three centuries. But it gives me the opportunity to counter-attack full force, which I do. I don't put up with much of that; I reply to their company quite fiercely. One guy, Erik, lost his job because of bigotry about PD and we helped him get a job with the competitor. He walked off with a lot of his old employer's business, because the customers knew he gave the best service.

[Sasha]

Sadly, Bob, I believe you. Ironically, the strongest prejudice I have found is in our local support group - which is run by non-parkies with a patronizing attitude toward the afflicted. No afflicted on the board and our suggestions for program topics are brushed aside!

[Conductor71]

Originally Posted by Bob Dawson

But in the past two years I have run into something that is new, at least to me: bigotry or fear or suspicion based on the "science" that says our disease or the drugs cause some of us to embezzle money to go gambling in Vegas; addicted to sex and chocolate and drugs and gambling and booze. Therefore not to be trusted. It's been in the newspapers a lot,.

As if we didn't have enough to worry about...

I was appalled when I read of your experience and observation, though sadly not surprised. This reaction seems to be born out of fear and ignorance. I think largely people want to believe that it's an old person's disease and that it can't happen to them-seeing you, or any peer, scares the living daylights out of them. If it can happen to Bob, then...where does that leave them?

As far as publicizing the (potential) negative side effects, I must say that I haven't encountered too much of that in the States. Most of our news sources describe our "shaking palsy" (oh, how that riles me) and report on every little research finding down to a hangnail as if was to be THEE cure or better yet, the Rosetta Stone, solving the mysteries of most neuro-degenerative diseases. The overall tone here is more of pity in the reactions of people you meet and "on the street" so to speak. This is why we need patient advocacy. Our many PD non-profit orgs. aid us in finding treatment or support groups but do very little to raise awareness to help dispel the stereotypes. So, props to you for spreading awareness! I am so heartened to hear that you colleague also took most of the offending company's clientele with him.

Laura

P.S. I'm a noob here too- this is a great place for intellectual discussion, support, and advocacy!