Is it OK for my mother to keep her recent diagnosis of Parkinson's disease a secret from friends and colleagues?

7 answers | Last updated: Nov 28, 2016
A fellow caregiver asked...

My mother was recently diagnosed with Parkinson's disease, but she hasn't told any of her friends or coworkers because she's embarrassed by her shakiness. I think it's a bad idea for her to try to hide the condition. What can I say or do to help?

Expert Answers

Joseph H. Friedman is director of the Parkinson's Disease and Movement Disorders Center at NeuroHealth in Warwick, Rhode Island. He wrote Making the Connection between Brain and Behavior: Coping with Parkinson's Disease .

First, your mother's concern about her work situation is understandable. Sometimes patients, despite doing a good job at work, will get fired because of their Parkinson's disease. That's a violation of national law, but it happens all the time. So I can't judge your mother's work situation; she has to judge it.

But you can help her understand that friends and family may have already recognized that she has a problem. And that many people who love her are probably worried about her but don't know what to say because they don't want to be intrusive.

So, I think that it could be beneficial for your mother either to tell friends that she has Parkinson's and is dealing with it -- or to just say, "I know that I shake, and I'm under a doctor's care for it." If she doesn't want to tell people what the diagnosis is, she can at least say she's addressing the problem. Those who care about her will then feel reassured that it's being attended to.

Community Answers

Shopper answered...

Please tell your Mom not to share this. I had early on set Parkinson and taught. I thought I should tell the principal in case I got very ill and she could have someone in mind to replace me if I was absent. I also travel into the city to see my doctor. He is only available on school days My attendance has been excellent, but I am one of the highest paid teachers. The principal started to look for things that were not there. I walked too slowly. She asked me about a situation and I told I would get back to her as I wanted to think about my answer. She said I was forgetful. She called the president of my union and said she was worried about my ability to teach. Last year I wrote two grants totaling $3000 for the district, I felt I was sold down the river. The union official said she would make my life a living hell if I did not retire, so much for union protection. Currently I am successfully teaching at a small college no one knows I have Parkinson. Learn from my mistake. Tell no one. Anyone you tell starts looking at you closely expecting to see something. Most people cannot keep a secret either. Don't believe that you can bring an employer to court. It is their word against yours. It is costly and anyone I have spoken to does not win.

Footprints answered...

I have a twin brother with Parkinson's. He has had it for 17 years and I choose to see him as he has always been. His mind is active. His body is not. In my experience I would suggest to let your mother find her way with her dis-ease and walk beside her with love. She has the condition you do not. Be thankful that you are in a position to assist her. Be their for her. And stay relaxed, calm, helpful and thoughtful for her as she finds her way through the minefield of advice, information, fear, anxiety and judgment which surrounds this debilitating disease.

In quietness are all things answered, and is every problem quietly resolved. In conflict there can be no answer and no resolution, for its purpose is to make no resolution possible, and to ensure no answer will be plain. A problem set in conflict has no answer, for it is seen in different ways. And what would be an answer from one point of view is not an answer in another light.

And from the beautiful system of thought; A Course in Miracles, it shares; Dream softly of your sinless mother/brother, who unites with you in wholly innocence. And from this dream the Lord of Heaven will Himself awaken His beloved Child. Dream of your mothers kindnesses instead of dwelling in your dreams on her illness. Select her thoughtfulness to dream about instead of counting up the hurts she is experiencing. Forgive her her illusions, and give thanks to her for all the helpfulness she gave. And do not brush aside her many gifts because she is no longer perfect in your dreams. Let all your mother's gifts be seen in light of charity and kindness offered you. And let no pain disturb your dream of deep appreciation for her gifts to you.

A fellow caregiver answered...

In the very begining, I only told my children their father had parkinsons. I gave them all print outs about the disease. As his condition became more noticeable I told his siblings because I felt they had a right to know. My husband never told anyone, never wanted me to, and has always had a problem accepting the fact he had.

A fellow caregiver answered...

My mother was just diagnosed about 2 mos. ago and her first response was denial, then fear that people would know. MY suggestion to her was to only tell close family since we see her all the time and noticed the tremors and can't be hidden. As time goes on, she can then choose to tell anyone else she wants should the symptoms become too noticable. This way I feel I'm giving her the time she needs to adjust to the changes in her life and have now moved her into my home to care for her, keeping her stress level down with not having to worry about doing the things we all take for granted, i.e., grocery shopping, laundry, cooking, etc. Her Doctor has said she's probably had it about 2-5 years but was a genius when it came to hiding it. I feel it's best to let the patient tell people when they're comfortable doing so, with the exception of family of course. It seemed to lessen her stress over the situation tremendously when she felt she had control over the decision and control is so important when it's the one thing you've lost suddenly.

Micol answered...

I too have made the choice of not making my having Parkinson's general knowledge. It is her choice, not yours. I will tell someone who ask about my condition. You can help by stepping in quickly when you see that she is having trouble cutting her food or drops something on the floor, both when others are around.

Ladydawn answered...

Balance and timing are serious issues in Parkinson's disease.

If you are a PwP, one problem with doing the 'right thing' and informing your work supervisor of your medical condition is that there is still not enough legal protection to protect you from becoming another victim of discrimination.

As Shopper has already explained, once the condition is known, you are no longer protected by past performance and your continued ability to perform your job. Thoughtful consideration becomes loss of cognitive skills, tremors are seen as contagious, slower speech becomes who knows - perhaps even a drinking problem.

Some employers do understand, so you will have to be honest with yourself about when it is time to retire or seek reduced work schedule; a less demanding job; or try to find a part time job to fit in with the growing fatigue or the drowsiness often caused by medication. Know that this man be many years into your PD journey.

One good thing is that in trying to retain your employment, you learn to become very proactive in your own treatment. It is easier now to be informed about treatments, therapies, research, clinical trials. Although the more aggressive approach may be somewhat expensive because some of the important therapies are not (well) covered by health insurance but often family and friends can help you. Therapists are learning how to properly code Medicare claims. In the future, more therapy centers or exercise centers may offer equipment which provides the best Forced Exercise for PwPs with the benefits of symptom and medication reduction. Then hiding symptoms behind problematic medications wouldn't be necessary.

Allow time (and this may be several months to a few years)for your own adjustment to having the disease. Go through the stages of grief about the diagnosis and then make you own decisions about whom to tell. Word will spread, so be aware that there is no such thing as a secret among friends. Also be aware that friends you do not tell may be hurt or offended by your lack of trust in them.

But know that on the PD journey, you will need those friends as much as you need your family.

As to the original question: this is a very personal decision and there is no right answer for your mother. Just remember that it is her answer. My husband is still upset by tremors 7 years after diagnosis (and many years after the actual onset) It is not just personal, it is societal value judgements that he rightly fears. Don't pressure her, the more pressure she feels, the worse the tremor becomes. She needs support and reassurance. More than that she just wants her life to feel 'normal".