Jun 16, 2012

Is it becoming fashionable to reveal you have Parkinson’s

A few years ago Michael J Fox announced that he had Parkinson’s, a degenerative disease of the brain, and people were astounded that he would come out and announce it in public. He made appearances on television and spoke about it, hoping to encourage the scientific community to find out more about it. Parkinson’s is a degenerative disease and you can never cure it; if you are lucky it can be arrested with very expensive medication. The sooner you discover you have it the better your chance to stave it off and arrest it.

Celebrities who have come out

Not long after we learned about Michael J Fox we discovered that the great boxer Muhamad Ali also had contracted the disease and we saw both of these celebrities making appearances in the hope to spread information about it. In one such appearance Michael J Fox took no medication beforehand in order to show the progression of the disease and the physical symptoms if he was not taking it. He came out on the stage extremely nervous looking, his arms dangling and shaking, and his speech visibly impaired.

Just a few weeks ago another celebrity, co-anchor of “Good Morning America”, Robin Roberts, also came out and revealed that she had been diagnosed with myelodysplastic syndrome (MDS), a disease of the blood and bone marrow known once as preleukemia. My own diagnosis of Parkiinson’s is just a few months old although I probably had it for months already before I knew and was diagnosed.

Benefits of knowing that you are ill

There are no benefits having a degenerative disease as it will become taxing in the later stages. There are four stages and I am in the first stages. Probably Fox and Ali are in the third stages and they are otherwise healthy except for knowing they are ill, and have physical symptoms. Coming out and revealing this to the world takes courage, and when I was diagnosed I did not cry about it. I had the scans, am taking the meds and with a new way of eating feel healthier now than for years before the diagnosis.

Reasons for coming out

There are many reasons for coming out: we don’t want to be treated as invalids; we don’t want you to step back when you first meet us and learn we have Parkinson’s; we are not contagious so there is no need to step back. We also do not want you to feel sorry for us and constantly refer to our health. Fixing it in the mind is the first thing, and then you have to live it. Besides all the things such as bucket lists and what you would now do to prepare for the end is behind me. Every day is a bonus and I love life and live it to the fullest. Coming out and announcing my illness to my family and friends was my way to say that I am all right and do not worry about me.


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