Hi. Recently, I got involved in a psychological argument with a close relative of mine about the process of assimilating a tragedy or an unhappy event. This person said the first step is denial, then it follows a period of assimilation and finally, the period of acceptance.

I said to him that when I was diagnosed PD about 6 1/2 years ago, I did not complain. Neither I asked: Why me? I only asked to myself how I should deal with this disease in order to slow down progression and not to affect my style of living or at least minimize any potential future limitation on a day to day basis through physical exercise, nutrition and good sleep; in addition to medication and updated information about the disease.

But then I added I do not like to be seen by strangers during my "off" periods (stiffness). He said that is so because I deny my disease. I argued it is a matter of privacy. Only my dearest family members and friends know about my disease (or probably other people already know but pretend they do not know). I added, to defend my point of view: why is it that people wear sunglasses when they have conjunctivitis in their eyes? I emphasized: "They do not want to be seen with that infection". Or why is it that we do not like to be seen exactly as we look like by strangers as soon as we wake up?

The fact I do not want to be seen in my "off" periods is a lack of acceptance or denial or it is something normal? What do you think about it?

Best regards,

Lobo

it's normal. being off is uncomfortable enough much less having strangers staring at you while your're trying to unfreeze, get comfortable and wait to go "on".

pd is the anti-denial disease imho, it's affecting you 24/7.

Your response is exactly as it is for many conditions and diseases but I know from pesonal ezperience that as you develop in one or like me in 3 or 4 different ones it is the same,

But I have learnt that if you do allow it to be known when it has just begun there is a period of time that allows for not only you but all around you to find themselves lacking the resources to stay around and help you later on.

Many of us I believe if you wait to long and they know or find out that you have kept them in the dark either they can't accept it or think it is your wish they then disappear.

Parkinsons is horrendous but Lonliness Kills.

There acceptance will change with time but so then will you but the need to be understood and accepted is ongoing.

Don't allow anyone to tell you what to do, how to feel, or eny you your life as you feel and want it. You know sometimes it is onlly that they cannot accept it and think they will handle it better and wiser if it were to happen to them.

Wrong! They will reallize that someday as none of us are unique,

Excuse my language here I don't make myself clear a lot of the time as this english is not my first language.

First time I ever put that on the site but to respond you inspired me.

When I was finally diagnosed after a couple of years of Neurologists, Immunologists, MRIs, Emgs, Muscle Biopsy, etc. I was relieved when a Movement Disorder Specialist confirmed that I had Parkinson's. It really doesn't bother me if some people stare when I shake, walk like a zombie, freeze, posterize or any of the other symptoms that this disease does to me.
Right now I'm just trying to keep my Carbo/Levo 25/100 8-tabs a day for as long as I can.
I was at my grandson's birthday party last year and had tremors in my right hand most of time there. There was a little boy sitting across the table just staring at my shaking hand. It kind of made me smile when he put his hand on the table and started shaking his hand like mine.
It's all the little things that help me to be grateful for what I still have & some of the things I can still do.

Lobo, I think that your approach is very healthy and normal.

It is what I use with my Major Depressive Disorder (not the same as PD of course) - I work on a "need to know" basis.

My family members and close trusted friends know and have all been very supportive.

Ignorant advice from others, however well-meaning, is something that I do not need.

more privacy than denial. i think that denial would be going out and pretending nothing is wrong.

Slashman, my grandchildren refer to my "dancing hand".

Lobo, I think your response is great and perfectly normal. Like you, when I was first DXed, I didn't feel sorry for myself or deny the situation. I had immediate acceptance and was more concerned for how my family would react, as I didn't want them upset. As a result, my family was great and PD jokes about my tremor or my lack of smell our common in our house. My personal focus, as it still is, was to learn and respond. I want to know everything possible about PD and then respond by doing everything possible to control the symptoms and the progression. I never hid the disease from anyone, but rather, I became an active advocate for our cause.

I will say this, though, I'm not sure there is any right or wrong way to handle the response. Although I personally never believed in hiding my head in the sand about anything, I do know each of us has to handle life events in our own way.

Having PD is like being in a boxing match. Just put your head down and keep swinging.

Best of luck to all.

Hello lobo, in my view, not wanting to be seen by strangers on a bad day does not mean you haven’t accepted your situation. Rather, it is more a response of how you prefer to cope with your accepted situation. If I were in your position I would probably feel the same way as you do.