The Art of Disclosure

[lenieb]

When I was first diagnosed 1.5 years ago, I decided that how to "come out" to others about my PD would be my own, slow roll out and that decision was really good for me. I wanted to be the one to share in my large circle of friends, community acquaintances and colleagues, one by one. I didn't want people to "hear" and feel uncomfortable asking me about it. Increasingly, I am open; however thus far I've kept it confidential in my work; until it feels relevant to share with others (none of my symptoms are obvious - mostly stiffness and rigidity, but people don't see that!). Publicly, I still feel uncomfortable being specific that I have Parkinsons; I feel more comfortable saying I have a "neurological movement condition" - perhaps because for people without knowledge about PD, the word "Parkinsons" brings up such a frightening and negative image. So often I see the gasp of "how awful," and that makes me uncomfortable. Plays havoc with my long time identity of being a really healthy person! And there is always the issue of meeting someone new and when I choose to share my health condition or not. Curious to know how others feel about all of this.

[stevie3]

I am very similar to you. Diagnosed nearly two years ago, at first only my husband and closest friends knew. I head up a small charity and I've told my two senior staff as I felt someone in the office needed to know but it's not generally known. I only told my two children (17 and 23) earlier this year. They asked two things: are you going to die? (not of this, no), and is it hereditary (probably not) and they have barely refered to it since. I hope my 86 year old mum need never know. I generally put my symptoms down to a dodgy back and trapped nerve (I have both those things and thought that was what was causing the problems initially). As time has gone on, I've told a few more friends. I get a bit more tired than I used to and they need to know.

My Parkinsons nurses thought it would be 'empowering' for me to share this at work. Luckily, my neurologist counselled caution. I'm glad I took his advice. Like it or not, people have misconceptions and I don't wish to be written off as far as my career is concerned. I'm fortunate in that I work part time so it's not too enervating and I can look after my health. I am a healthy person! I see this as a condition, not an illness. I know it is progressive but luckily I've seen only a slight downturn in two years. I'm taking aziclet and 4mg of ropinirole every day, plus Mucuna Puriens and that seems to control the symptoms ok for now. I find this site invaluable for information on managing it.

[Fredzu in reply to stevie3]

The kindest disclosure message is so what.

[lenieb in reply to stevie3]

I also really like to refer to this as a condition and not an illness. Thanks for sharing your thoughts.

[Hikoi in reply to lenieb]

Yes!

[bibsie in reply to stevie3]

Hi Stevie,

Could you tell me how much mucuna puriens you take....and in what form? I've ordered powder but people often refer to capsules so I have no idea what or when to take it....mainly for tremors and stiffness. Thanks for any helpful details.

[stevie3 in reply to bibsie]

I use the power -Zandopa. I think you have to find your own dose through experimentation - start with a heaped teaspoon and work up. I use it in fruit juice. Please research it - there are a few issues with it and they say nit to use it with aziclet (although I do).

[12stargate]

lenieb you are doing it your way, so you are it the way that works for you

I tell anybody that will listen! I do it to educate people and help them understand it is not a death sentence.

I retired when I received the diagnosis, so I had nothing to lose by letting people know.

Keep up the good work

Each one of us are such individuals, and I do what works for me👍

The best to you.

Love from Eva 😎

[Bailey_Texas]

I have had PD for 11 years for the first 4 i told no one. Now i tell every body because you can not tell i have PD. i tell them how long i have had it and tell them if they know or know of anyone that has PD to get them moving and never give up. Took me 9 years to stop my PD and to get my life and i believe most PWP can slow or stop PD with the right combo of meds and exercise. It is hard but can be done.

[p-oui in reply to Bailey_Texas]

I would love to hear more about what has worked for you. Thank you for sharing. I am new to PD and am sorting through the possibilities. Your note is encouraging!

[park_bear]

I don't keep it a secret. Sometimes I wonder if I come off a looking for sympathy since my symptoms are not apparent to others, except sometimes to the well-trained medical eye.

[park_bear in reply to park_bear]

But no one has gasped or reacted with horror. I and most others in my circle are retired so many others have got their own particular conditions to contend with.

[soup]

My husband decided to tell most people, bosses, friends and family straight away.

The elephant in the room was a bigger worry to him than the looks of concern and gasps of surprise.

If people only know PWP in the advanced stage, what a relief it must for them to see that life goes on after diagnosis.

Each to their own.

[beang]

12 years, and most would not know at first look. "I wouldn't know you have PD." My response: "Ask my wife!" Think what you can do to help correct the mistaken identity of PD.

[lenieb]

Thank you for your reflections! I absolutely agree about the importance of educating others and being able to be authentic. . .but also agree everyone has to do it "their" own way. I am mostly convinced I will do really well; i am as busy and involved in my life activities as ever before, have a very positive attitude, have been majorly humbled by having this condition, exercise a lot and not letting it stand in the way. Hope you all have a good day!

[Hidden]

My only concern for not telling my coworkers is that Parkinson's is not just a movement disorder, its a communication disorder. It interferes with how your brain communicates with your body, your brain communicates with itself and how your brain communicates with other brains.

[Lillybelly]

Hey lenileb,

Thanks for sharing your 'coming out process'. I think there are factors to be considered... such as the PwP age and how obvious it is [that they have it]. Also it depends on how good [or not] you are at sharing personal stuff.

I was diagnosed 18 months ago and to the casual observer it is not obvious at all, plus I am a gorgeous, glamorous young woman (!), who thought beforehand, that PD was something old people got! Ah, but now I know the truth, sadly. Well I kept it to myself for about a year and was in no rush to tell anyone [being rubbish at sharing private things with others]. However my hubby persuaded me to tell some of our friends. [I think he was struggling with my diagnosis - and needed to talk to someone] And Oh boy! Was that difficult?

Well yes it was, but with hindsight I am glad that I did it. It was around that time that I took charge of myself, stopped feeling sorry for myself and joined a load of groups [previously I'd been on self imposed house arrest and barely went out - not even into the garden]. I'm not sure that I could have been selective about who got the info and who didn't... without putting anyone under stress to keep it 'mum'... but then we are all different and I am happy that you are coping well, and finding your own way through this terrible journey. Totally get what you mean by the "How awful" comment, I don't like that response one bit.

PS I was just kidding in my personal description - it's all a pack of lies, except to say that I am a woman...

[Angelo65 in reply to Lillybelly]

Keep being positive and keep your sense of humor, which clearly comes out. Be lucky or better still make your own luck.

[lenieb]

Thanks a lot for sharing. I may have misrepresented my coming out process a little. I definitely initially shared with all my family and closest friends. It was just the public persona I took more slowly. My symptoms don't show either - now I tell people fairly readily, but it's still weird to share this because at the moment I'm doing it forces me to "be with it". Having said that, I am pretty realistic that I have this crazy condition, but telling others definitely makes it more real.

Wow, i totally believed you are glamorous. That's funny, I bet you are more than you admit, as we all know, glamour is bigger than magazine looks!

Be well, and all my best.

[Andreajohnson]

I feel embarrassed and hate people knowing I try constantly to hide my symptoms people who know avoid mentioning it sometime I feel like a leper !!

[Sunshinej]

hope you have all heard of the mannitol for parkinsons see clinicrowd page re this