Keeping PD a secret

I wonder if there’s anyone else out there who has been hiding their PD from friends and family. I was diagnosed in 2007 at the age of 57. It came as a great shock. Not only that, but one of my overwhelming emotions was embarrassment, which is not logical because obviously it wasn’t my fault. Nevertheless, that’s how I felt. At that stage I knew very little about PD, but felt that it was such a defining disease – it defines what you are, unlike other conditions such as diabetes. Of course, my wife had to know (we have no children) and so did various medical practitioners, but I’ve told no one else.

I decided not to tell others about my condition if I could help it, and I think I have managed to get away with it because I’m fortunate that my form of PD is mild and is progressing very slowly. I take two Sinemet 25/100 tablets per day, which make me feel almost normal during the “on” period: no tremors, no leg drag. If I go out anywhere, I try and time the effect of the medication. It takes about 45 minutes for it to kick in and the effect lasts for 3 to 4 hours.

So far no one seems to have noticed that there is anything wrong with me. This could be because a lot of people aren’t very observant, or maybe they are too polite to ask what’s wrong with me. If my condition gets any worse I’ll have to confess.

Another reason why I haven’t told anyone is because of the misperceptions people have of PD (as I did). Most think of it as a disease that affects old people, causing them to shake uncontrollably and to need help with some of the basic things in life such as bathing and dressing. Some people also think that it affects one’s mental ability. Yes, that may be true for some PD sufferers, but as we know we are all affected differently. I haven’t mentioned my condition to my clients (I’m a freelance language editor) for fear that they might think that my brain has been affected and they’ll stop sending me work.

I know that by keeping my condition a secret I’m missing out on the support and sympathy of friends and family, and also the opportunity to educate people about PD. I’d appreciate any comments or advice.

llew,
I was diagnosed in 2001. I also am married, have kids, and work full-time. Frankly, I barely knew what Parkinson's was at that time. I learned.

My kids were in grade school. My husband and I decided not to tell the kids, but later changed our minds. We gave them the high-level, unemotional facts without dwelling on the future. We focused on today without being unrealistic. (That is still my philosophy - be realistic, but the future is unknown.)

Then my third grader came home with a research-type paper be had written. The topic was Parkinson's. It said it all ... with much more detail than I had provided. I asked him if he had any questions, concerns or wanted to talk about anything. Nope.

My other dilemma was what to say at work. If I tell them, will they be looking for reasons to eliminate me? If I don't tell them, will I exhibit symptoms that they otherwise would work with me on or make accommodations? Did anyone notice? My primary symptom continues to be tremor. I thought everyone noticed me resting my hand on a desk or wall to stop the tremor ... to cross my arms ... to rest my hand on my hip. Not telling folks was causing me stress ... which was aggravating my tremor. So I decided to tell.

First of all, I told my manager. He asked if I wanted to tell the VP and offered to attend that meeting. I took him up on it. I knew my VP didn't get it when he started telling me about a health situation his wife had which in NO way compared to the significance of my mine. (At least I knew what I was up against.)

My department was divided into three groups. I decided to ask the manager of each group if I could have 5 minutes at their monthly meeting to explain Parkinson's and what my symptoms were. They each obliged. I attended each meeting, thinking my symptoms had been glaringly obvious. Not one person had noticed. Not one! Not even a guy I worked closely with everyday. I was amazed! Telling folks did, however, greatly reduce my stress level.

Over the years there has been turnover of employees. I have not made a point to tell everyone. I have done it on an as-needed basis. Even now - after 15 years of symptoms - few people have noticed. My challenge now is my manager. Sometimes I feel he is setting me up to fail. However, our company culture has changed due to an acquisition two years ago and I think many departments are feeling the crunch. Stay tuned ....

Lizzy4451

Llew,
I thought about your comment that your spouse was sort of maxed out on PD. My husband is, too. He really doesn't like to talk about it and certainly isn't one with whom I share my concerns, current symptoms, etc. He attends very few PD events/activities with me. He sometimes suggests that I paint a gloom-and-doom picture. I happen to think I am optimistic. I am also a realist. For example, before my PD diagnosis we had toyed with the idea of owning/managing a marina (for boats). I told my husband that I think it is unrealistic to invest that kind of money in something that I may not be able to participate in to the fullest. I'm not even talking about my appearance - tremor and slowness of movement - but agility and flexibility it takes to get on/off boats and to maneuver around in confined quarters and moving platforms/boats, etc. My husband thought it was ridiculous that I would even think of those limitations and sort of blamed me for popping his bubble. Yes, my symptoms are minimal at this time. BUT that probably won't be the case in the future. I think we need to move on and evaluate Plan B - whatever that is.

As for support, no one understands better than someone with the same challenges. The best part of this disease is the WONDERFUL people I have met - both online and in person. I've been around a bit - started a support group, have been to Washington, DC with a national PD group to lobby for PD issues, and currently am an advocate for a national PD organization that educates people about clinical trials and tries to get more folks involved, etc. In all situations, the people are wonderful. Being involved is also my way of fighting back. I am not going down without a fight. Oh yeah .... fight. I also exercise regularly with a non-contact, boxing-based fitness program for people with Parkinson's disease. The camaraderie within that group is awesome. Perhaps you can find a local support group. Just a word of caution ... sometimes traditional support groups can be a bit overwhelming because there are people with a wide range of PD symptoms. The support group I started was young-onset, because that's what I was when first diagnosed. I am not young onset today.

Best of luck,
lizzy4451

I was diagnosed with Parkinson's in November 2010.
I’m still in early stage, though it could and should have been diagnosed many years earlier.
I still take:
- 1.0 mg Azilect – onedaily
- 100/25 Levodopa/Carbidop - 3 times daily

When I was diagnosed, I thought about whether I should tell family, friends, and my workplace.
It is a really tough decision. It is embarrassing to me to admit I have I have Parkinson's. At least for a few years it was.

I was worried... I thought my friends would avoid me. They haven't. But... I still think one day they will. I keep fit and keep strong with exercise. I work hard every moment that I am awake to hide my condition. I, with meds, work hard to control tremors. If I can't control the arm swing, I keep my hand in my pocket. Most would say I am fun and funny to talk too. I have a great sense of humour. So... my friends actually forget I have Parkinson's. I work always to hide it and look as normal as possible, every moment that I am awake. Some day though, even with best meds, hiding it will be harder, fatigue will be stronger. I fully expect not to be able to hide it as well and for people to avoid me. Nature...

At work, I informed my boss, and her boss, and eventually all my team members...

Now this is where things went weird. Telling a boss might depend on what kind of a boss you have. If you have the type of boss that I have then it might do you well to also inform Human Resources, all upper management, everybody, and make sure your boss knows that they all know.
Keep in mind, I am a happy man. I have a great wife. I travel as much as I can. I joke. I am positive in thoughts...

After I told my boss, my workload eventually multiplied. I did not see this happening to teammates. One day, she tried to make me claim a medical appointment that she thought was for Parkinson's as sick leave. It wasn't. I go to one Parkinson Specialist appointment every 9 months or so. My boss thought it was my 2nd appointment of the fiscal year. Keep in mind that multiple dental appointments per fiscal year are not treated that way. The 'healthy' team members claimed as many repeat appointments as they wanted, as did she, as med appointments, not sick leave. Soon she asked if I wanted to switch to another department.

Keep in mind I rarely call sick on a team that maximizes sick leave. It's just not my way. She looks the other way for the others. One day when I called sick due to agrivating an old knee injury on a day where the rest of the team used sick days, I, with Parkinson always and injured knee, was called in to work so the others could continue to 'be' sick. Soon she asked if I would like to switch again.

Then while the others routinely use more sick and family leave than my yearly vacation days, she denied ever approving my vacation just days before my flight. She actually had approved it months earlier. I thought I would have to cancel my flight/hotel. Again... soon asked if I wanted to switch. Jeeze... even people with Parkinson's need vacations. And I plan well in advance. 3 days vacation (plus 2 national holidays) that month was less the my team's average sick days. On average they took 5 sick days that month.

I grew quieter at work to try to avoid being targetted.
(There is more to the story in that the guy who seems to have been her earlier target eventually got sick and passed away. But before he got sick he went from being the most talkative person to the quietest. This happened after this boss joined our team. After the guy passed away I felt the target move towards me.)

On some level the fact that I am a happy person, even with Parkinson's progressing, can bother unhappy people, I think. Watch out if they are in power.
In August and in September we had two meetings with the manager. I let it out. Bullies have to know they can't get away with things like that. The manager was quite concerned about this escalating as I had a case. I did not want escalation.

For the record, two people had big smiles on their faces upon discussing my Parkinson's diagnosis for the first time with me. She was one. Both happily told me about someone they knew with Parkinson's and how bad they extreme their condition had progressed, not caring the least about my thoughts. She was one.

Now upper management knows my condition... I informed them.

So it is case by case. In my case only informing very few at work was used against me.
If I did it again, I would tell the director and her assistant from day one and make sure my boss knew they knew, to keep her honest.
Now I openly discuss my condition to protect myself. I seriously do not want to talk about my condition. I like talking about happy, fun, positive things. But I don't want my condition to be used against me either.

Hi TruthGenesis2
Thanks for your thorough and fascinating reply. This throws some light on the problem of whether to confess or not: it depends so much on the person you're telling. It seems that you just can't predict the response and attitude of any particular person, but you make a good point when you say that you reveal your condition to protect yourself - in the work situation anyway.

I have this fear of being stopped at a road block and the cops ask me to get out of my car and walk a straight line. It would look bad for me if my meds weren't working at that particular moment!

One thing I'd like to ask, though, is when you say "I thought my friends would avoid me. They haven't. But... I still think one day they will." Why do think that will happen?

All the best.

Just a note:

I accepted a move only to find my boss was moved too at last moment.

So, I've let uppermanagement know my condition...  as protection from people like my team leader. 

And gone completely public with my condition.

|I believe this helps.  My boss fits the description of passive aggressive control freak.  Meaning bully.  So I must not only inform upper management of my condition but also inform her that upper management is aware.

So...  when to keep a secret, when not too?  Case by case.  We all have our own life problems but there are extra mean people out there.