It seems lately that almost every week there is a new announcement that someone famous has been diagnosed with Parkinson’s. Does it make it all the more shocking that they are well known, that they are celebrities that are celebrated for revealing their diagnosis? Their bravery in doing so, is often mentioned and also – often this is the case – that they have been battling Parkinson’s for some time.
But what has a celebrity got to lose in revealing this truth? Is it more or less than the average person who is revealed to have the diagnosis that will change our lives forever? It may have an impact on their ability to get work, but for many – not all of course – it may not mean that they cannot pay the bills. A celebrity receiving the diagnosis, may in most cases be able to choose whether to continue working without the added stress of how they will manage financially.
But, on the positive side being well known can mean that the coverage they receive once diagnosed can be a positive thing for all of us with Parkinson’s. When they speak out, people usually listen. How they live their lives can inspire others to know that there is still a life to be lead and that it can be a good life. If one of us was to stand up and talk about our lives with Parkinson’s, I’m sure we wouldn’t be sought out to do interviews in the same way that celebrities are likely to do.
Thinking of some of the famous people I can recall who share our diagnosis, we can perhaps learn from and be inspired by them.
- Michael J Fox – perhaps the most famously famous, not just for his work on screen, but also for starting up the “Michael J Fox Foundation” supporting those with Parkinson’s and doing research to ultimately find a cure. He is my Parkinson’s hero.
- John Walker – a New Zealand athlete and middle distance runner. We can learn that nothing is achieved without hard work and building stamina. That life is not just lived in the moment, but that ongoing training and determination is the best way to live a healthy and good life.
- Billy Connolly – It seems a long time since he announced that Parkinson’s had invaded his life. He continued for many years to give joy and laughter through his comedy. He teaches us that there are still things to find joy in, to make us laugh and that we all need to laugh. They say laughter is the best medicine and often Billy would laugh at himself and situations he has got into. He reminds me that it is important to be able to laugh at ourselves and not to take life too seriously.
- Linda Ronstadt – One of her songs I listened to today is called “Tracks of my tears” and a couple of lines from it are “Although I might be laughing at a party, deep inside I’m blue…” It reminds me that many of us – me included and very much so – hide our fears and our tears, by covering up with laughter. Just because you don’t see someone sad and crying, doesn’t mean that they are not crying inside.
- Ozzy Osbourne – I don’t know much of his music and I never really followed his ‘fly on the wall’ show about him and his family. But in the final weeks of his life he put on a last concert with all the funds going to Parkinson’s. So, although I have not followed his career, I can appreciate that he performed this selfless act of performing when he wasn’t very well at all. He wanted to give his fans a last concert and raise money for Parkinson’s research. That I will always be grateful for and appreciate his selflessness. It reminds me to be mindful of other peoples’ need for support and that mine is not the only life affected by something so big that sometimes it is overwhelming. Others around me may have their own health challenges and perhaps by talking openly about mine, it might inspire others to share their journeys.
- Carly Simon – has always had a beautiful voice and one song that always sticks in my head is “You’re so vain” supposedly about Warren Beattie. It is ironic that she sings a song about being vain, caring what people think about them and what they see when they look at her. It is often the physical affects, the gait, the freezing, the balance issues that those who observe us in the community will be familiar with. These physical symptoms can be why a person with Parkinson’s might self isolate, because they do not want to be seen when the symptoms get more obvious and debilitating. I can hold my hand up and say that I try not to think about it, but I know it is likely that I will struggle with how people view me, when my condition advances.
There are likely to be more ‘celebrities’ affected by Parkinson’s and not all of them would choose to share their journey with the world. It is a pity if they choose not to because they are more likely to be heard. Unfortunately, those of us who are not celebrities often don’t get the chance to be heard and to talk about what what a life with Parkinson’s looks like for us.
I started this blog and latterly my podcasts to give myself a way to voice my thoughts and feelings about the diagnosis. My blog has been going for five years this year and it continues to help me to put my feelings down in a blog post or a podcast. But, that is not my only focus. I also want to provide an opportunity for others to read about my journey or listen to a podcast. Perhaps in doing so, I might be helping them to identify with my words and experiences and they may find them helpful. In my podcasts I talk further about my own personal journey with Parkinson’s and I also interview other people with Parkinson’s to give them a voice. If you would like to tap into my podcasts you can find them on Youtube, Spotify and wherever podcasts are played.
Here is what to look out for:
“My Journey with Parkinson’s” – available on all good podcasting platforms like Spotify and Youtube.
“Parkies Patter – a chat about all things Parkinson’s” – also available on all good podcasting platforms. This podcast is my interviewing other people with Parkinson’s and giving them the opportunity to be heard.
You don’t have to be famous to make a difference. If you can help even one person to better cope with this diagnosis, that is a good thing. Or, attend a support group and openly share your experience of Parkinson’s and so we can then support each other and share our joint exertise and knowledge.
As has often been said in my family “I am not famous, but I’m a legend in my own lunchtime!”
My journey with Parkinsons 