Famous people with Parkinson’s…

There are many well-known people with Parkinson’s out there in the world. It chooses the special ones, I say. There are those who have risen to fame in other spheres where they are known as actors, singers or other claims to fame.

When you hear the name Michael J Fox, is it Parkinson’s that most who know him for. For those of us in the exclusive Parkinson’s club, the name may be closely linked to Parkinson’s because of our shared reality. But even so, I instantly think of him in “Back to the Future” as the main thing I remember him for.

Billy Connolly. Would you immediately think – if you are a ‘normal’ person – about the fact that he has Parkinson’s. Probably not. You are likely to think of his humour first. I always remember two things about Billy. One, that he says, “You know you are getting old when you make noises when you bend over!” So true! Next, I think of my husband’s Mum when she came over to visit us in Christchurch. We took her to see Billy live on stage here. It wasn’t long before the odd swear word – well probably more than the odd one – was delivered by Billy. Now, my lovely mother-in-law didn’t swear and would tell us off for the odd ‘bloody’ or milder form of transgression. We both looked at each other and then at her. She seemed unaffected by the language. Perhaps being hard of hearing was our saviour on that occasion! But no, I’m confident that his having Parkinson’s would not be the first thing most people would think of when you mention his name.

Ozzy Osborne. Recently deceased. Known for his show on TV – most recently – where we followed his rather quirky life with his wife and family. Of course he was also a musician and one with his own memorable ways of singing and stage presence. Would most remember him for his fame or his diagnosis. Another person with Parkinson’s. What I will remember him most for and appreciate is that his last concert – which was not long before his death – raised funds for Parkinson’s. Parkinson’s was not what many would remember him for either.

There are many more I could mention, that have worldwide fame in whatever sphere they have inhabited. But, the person I want to mention, the person who at best could claim to be ‘a legend in their own lunchtime’ – a phrase that has been used in our family for many a year – that person is… Me!

So, I have no worldwide claim to fame. I do my blog and my podcasts and have followers, but would not claim to be famous. However, through these things I have opened my heart and my life and put it out there for others to share in my journey. I would like to think that in doing so, I have helped others who also tread a similar path. So, what will I be remembered for I wonder?

Here are my hopeful ‘claims to fame’ for my family.

• That I was the Mum that read bedtime stories to my children and tucked them up at night and made them feel safe.
• That no matter how bad a day we had with each other when my children were young – and if you’re a parent you will probably identify with this – where I felt like I was cross with my kids all day. When I put each child to bed, I would say to them “Today I haven’t liked your behaviour at times, but I will always love you! Let’s try to do better together tomorrow!” I hated the thought that they would go to sleep thinking Mummy hated them because I yelled at them all day. I hold my hand up and that was sometimes the reality. But they went to sleep knowing they were loved.
• That even when we didn’t have much money we still managed to find fun things to do. We didn’t have a lot of money when I was studying and I couldn’t really afford takeaways. So, for a treat, I would put some cheap sausages in the oven to cook and then go down to the Fish and Chip shop and buy $2.00 worth of hot chips. I would bring them home and we would open up the paper with it’s steaming hot chips, add our sausages, grab the tomato sauce and have a picnic in front of the fire eating out of the paper. I hope they remember that.
• I hope that they remember that I came to everything I could when they were young. Sports days and school productions. Saturday mornings on a freezing day at the side of a rugby field or netball court cheering them on.
• Then came the grandchildren. Things are different with this second chance of nurturing the young ones we are blessed to have in our lives. Baking. I love baking. But, when my children were young, I baked every week and did about four things at a time to fill the tins and my children’s tummies. I, don’t think I ever really let them help, there was just too much to do. But, give me time with the grandies!? Our favourite thing has been baking together. I haven’t done it yet with the boys because they live in another city, but their time will come. Chatting and baking with the girls has been one of my great pleasures. I hope they remember those times with fondness and laughter and will bake those recipes – I keep them in a folder for them – with their own children and maybe grandchildren. When they are baking, I hope they tell them stories of how we baked together.
• Relaxing in the spa pool has been lovely and it gets the children away from devices, at least for a while. We talk about all sorts of things and I have had many a heart to heart with them as they tell me about their lives under a starry sky watching for satellites and planes to fly overhead.

There are many things that I have done with my children and grandchildren over our lives together. Many memories I have stored of precious time with them. I would list the memories of time spent with my husband as well, but they are many and I would take up so much time listing even some of them. Some of my very best memories and experiences have been with my wonderful husband, with whom I am truly blessed.

So, where do the worlds of the famous folk I have listed and my own even begin to meet? Just like me, they may be parents or grandparents and even if they never had children, there will be special people in their lives who will have memories of them. Would Michael J Fox’s children remember him most for his Parkinson’s? I can say most emphatically that they would not. They would remember him as a Father and all the memories of a parent child bond. So too, with the other ‘famous’ people I have named.

When you think of it, Parkinson’s inhabits a fraction of our lives. I remember when I was first going to University at age 40. A family member said to me, “Four years? You will be going to University for four years!” To which I responded something like, “Four years is nothing when compared to the rest of my life!”

So, with this diagnosis, even if we have it for 20 years if we live to be 70’s or 80’s or more, 20 years is a blip in our life’s journey. So, the latter years may get harder – more than likely – but don’t write off all the wonderful years prior to diagnosis and all the wonderful experiences and memories we made. Make memories with those you love. Don’t pass up the opportunity to make life have pockets of wonderful to remember.

So, I have Parkinson’s. It is relegated to the cheap seats. To a something in the shadows that will not take centre stage. It is not how I want to be remembered, while I am here and when I am not. I do not want to be remembered for my diagnosis and certainly not my symptoms. I want to be remembered for my love and for our laughter together shared together over the many, many years we still have to come yet and the ones we already have together.

Please, don’t allow Parkinson’s to be the thing you are remembered for.

If someone asks my grandchildren what memories they have of me, I hope they say, “I loved baking with Nanna!” or “She always read us stories and wrote poems!”

If someone mentions my Parkinson’s I hope they say, “Oh yeh. That!” and brush aside any further comments with the disdain the diagnosis deserves.