For some time, I have been wanting to write about my experience of having Parkinson’s Disease and the impact of my tai chi practice upon the condition. I have found it difficult to find a way to do so. I don’t want to sound like I am moaning. I am not looking for pity. But, on Sunday, I met a man brave enough to speak out very publicly about his struggle with Parkinson’s. Listening to him speak, observing people’s reactions, convinced me that I should do my bit to try to raise awareness of what the condition entails.
My experience of Parkinson’s is primarily one of a dislocation of my mind from my body. My mind sends commands to my body but the body seems unable to understand. It is as if mind and body are speaking different languages. It takes the body a long time to figure out what the mind wants. Everything happens so slowly. Do you know that feeling when you have been sitting in an awkward position and your left foot has gone to sleep. You stand up but that left foot just dangles there. You can’t feel it. It’s not responding. You have to wait for the blood to flow back in. For the feeling to gradually return. Then you can trust the foot. Put weight upon it. Walk. Do you know that feeling? Well, it’s a bit like that. But permanent.
For me, the biggest impact of this mind/body dislocation is in the field of fine motor skills. Luckily for me, at the moment, the larger scale motor skills remain relatively unaffected. So, I can walk 50 miles. Run a marathon. Complete a triathlon. All of which I have done whilst having Parkinson’s. There is always a trade-off in terms of available energy. It takes me a while to recover from these events. Nevertheless, I can take on these challenges. Yet I struggle to clean my teeth. I search for slip-on shoes so that I don’t have to tie show laces. When I strum my guitar, I can never guarantee what my right hand will do. When I stir the milk into a cup of tea, it is hard to predict how my hand will respond to the rotating wrist action. But, more often than not, a large proportion of the contents of the cup ends up in a puddle around it. This can all be very frustrating. I have had to learn to accept it. To work within these new parameters.
In many respects, it is easier for me to accept and deal with these new parameters than it is for my family. On a daily basis, they have to deal with an outward shell of their husband/father that is not the same as it used to be. An outward shell that is slow, clumsy and unresponsive. When I am at my worst, I tend to stay indoors, hide away. The wider public only really get to see me at my best. My family sees it all. When I am out in public, I make an effort. I work hard to appear normal. But that is tiring. When I get home, I am exhausted and just want to be left alone. To not have to make the effort. So, again, my family get the worst of the deal. They get the burnt out shell. No energy left for them. But, it is more complex than that. Crueller. Because, within the shell, I am still the same person. I have not changed as a person. I am still the husband they married, the father they knew. What has changed is my ability to outwardly express the person inside. And my family know that. They know that I am in there somewhere but there is no way to get me to respond externally. So they cannot touch the me within. So they get frustrated too. And we take our frustrations out on each other. Because there is nowhere else to go. Then, we all feel guilty for behaving badly towards those we love. It’s hard.
Mornings are the worst. I wake early. Always. Feel tired. Always. I would love to lie in. Snuggle down beneath the duvet. Drift back to sleep. But it’s not an option. Because my body is clenched like an angry fist. All my muscles are tight. I feel like an elastic band wound round and round until I am about to snap. It’s painful. I have to move. Oh so slowly at first. Stumbling from bed-room to bath-room. Limbs not yet coordinated. An apparent drunk. Gradually allowing my body to relax. And, little by little, my mind and body begin to talk to each other. My various limbs recognise that they belong to the same organism. I start to feel human. I have to get up anyway. It’s time for my first batch of medication. If I have been organised, I will have put my tablets into the dispenser the previous evening. Four little compartments. MORN, NOON, EVE, NIGHT. Each with the appropriate measure of yellow pills and white pills. Such are now the measure of my days. If I have not been organised, I will have to struggle to release the pills from their packaging. Fingers fumbling at bastard blister packs. Wait for the combination of movement and drugs to take effect. Then take the dog for a walk.
Often, the part of me most reluctant to come under control is my face. I often wake with a grinding headache due to my facial muscles all being in a state of high tension. My wife wakes to the sight of a grimacing stranger. She often comments that I no longer look like me. It’s an odd experience having to concentrate hard to will your face to smile in recognition of a kind comment. It feels dishonest somehow. And it’s exhausting. But not to make the effort seems disrespectful and cruel. So, I try and make my facial expressions appropriate to the context. This experience of wearing a mask, of a frozen expression, is common amongst Parkinson’s sufferers. During the London Olympics, a man was arrested, suspected of terrorism, because he was amongst the crowd and not smiling. Police thought he was clearly present for purposes other than enjoying the Games. Turns out the man had Parkinson’s.
So, enough with all the tales of misery. I just wanted to give a taste of what those with Parkinson’s face every day. But, I would much rather focus on the positive and try to explain my understanding of how practising tai chi helps me. My experience is that it helps on a number of different levels.
Firstly, as I have hopefully conveyed, many of the symptoms of Parkinson’s are caused by excess tension in the body. The tremor, the facial contortions, the morning stiffness (ooeer nurse!). It’s no wonder I am so skinny – my body is always on the go. I am permanently in calorie debt. So, relaxation is key. And tai chi is all about relaxation. The more I practise, the more I realise that relaxed tai chi is better tai chi. One of the many lessons I have learned through tai chi is that strength does not come from generating force through muscular tension. It comes from correct alignment of the body working smoothly in a relaxed fashion. The more relaxed you are, the more smooth your movements, the more power you are able to generate. Over time, you learn to use the breath and mind to relax the body. Your power increases. When I do tai chi in a calm, focussed fashion, my tremor stops. I am able to move with co-ordination and balance and without tension. And boy does that feel good! My body feels at its best when it is doing tai chi. So I practise every day. Not because I am unusually dedicated and disciplined. It is just because I like the feeling.
The tai chi I practise works a lot on the spine. Many of the movements are concerned with mobilising the vertebrae. Stretching and twisting the spine. Giving it a thorough work-out. The aim being to make the spine more supple. Now, it seems to me that, as the central nervous system is routed through the spine, and Parkinson’s is basically a misfunctioning of the central nervous system, doing intensive work on improving the functionality of the spine is going to have a positive effect on Parkinson’s symptoms. The spine also connects the top half of your body to the bottom. It is the central column that everything else hangs off. Anyone who has suffered from a bad back will know how the health of the spine impacts upon the healthy functioning of the whole body. I have mentioned how Parkinson’s makes me feel disconnected from my body. It often feels uncoordinated. Movement just doesn’t flow as it should. Parkinson’s sufferers are not noted for their graceful movement! But, tai chi, by working extensively on the spine has enabled me to regain a sense of the body being connected. Each movement in tai chi demands whole body awareness. Each movement is driven by the feet through the legs, controlled by the hips through the spine to the shoulders and expressed through the arms. To achieve this demands a relaxed concentration which I can then employ to help my movement in everyday life.
Then, there is the whole business of chi. In Chinese Traditional Medicine, chi is seen as the energy available to the body. There is external chi that we take in to our bodies from outside. And there is internal chi which is stored within our bodies. Basically. Very basically. It’s way more complicated than that but, basically, the belief is that, in order to be healthy, chi needs to flow smoothly around our body. And tai chi is designed to do just that – to encourage a healthy circulation of chi around the body. Now, a major symptom of Parkinson’s is fatigue. Constant tiredness. A lack of energy. So, an exercise regime, like tai chi, designed specifically to promote the flow of energy around the body, seems like a good idea.
Another benefit I have gained from tai chi is a marked improvement in my balance. Shortly after diagnosis but prior to beginning tai chi, I vividly remember being on holiday in Cornwall, walking across rocks close to the sea’s edge. Normally, I would have skipped cheerfully from rock to rock. My balance had always been fine. But, on this occasion, I froze, painfully aware that I could no longer trust myself not to slip. Five years of tai chi and my balance is better than it ever was. In tai chi you learn to move with an “empty” step – remaining in control of your transference of weight. Always able to pull back if necessary. Never committing until you are ready to do so. The essential elements of good balance.
Tai chi also has a very positive role to play in terms of social interaction. Yes, you can practise on your own at home and that is good. But you soon learn that there is a special charge to be had from doing tai chi in a group. It’s like any group activity where you spare a space and purpose with a number of other human beings- being part of the crowd at a football match, sitting in the audience at a theatre, watching live music- you draw energy from those around you. It enriches those who care to partake. Oh, and in my classes, it is important that we find time for tea and biscuits, a chat and a joke. I have made many good friends around the world through tai chi.
Perhaps most importantly, tai chi has given me a renewed sense of purpose. After 26 years teaching in state schools in the UK, it was hard to be forced into retirement by Parkinson’s. Teaching young people is more than just a job. It is not just a way of paying the mortgage. It takes more but it gives more. A lot more. I was a committed teacher. More than a little obsessive. I thought it was the most important job I could do. Still do. I wanted to change lives. I wanted to change the world. It was my life. To have it taken away left a huge gap.
At first I moped around the house. Then my wife suggested I try tai chi. She had been practising for several years and thought I would like her teacher, the late, great Jenny Smith. I was so fortunate to have that push from my wife. And so lucky to find Jenny as my teacher. A fellow obsessive, she encouraged me to devote as much time as I could to tai chi. I went to a class with her pretty much every week day for months. She was a constant source of advice, encouragement and wisdom. She took me under her wing, became a good friend as well as a teacher, eventually guided me towards becoming an instructor myself. I miss her greatly.
But the gap was filled. I was a teacher again. I had a reason to get up in the morning. Even when I really didn’t feel like it. And some mornings I really don’t. But I always feel better after taking a class.
So, tai chi gives me Relaxation, Flexibility, Coordination, Concentration, Balance, Energy, a Social Life and a Sense of Purpose. Not a bad deal. I’m happy.
It has been really interesting and inspiring to read this, Andy. It is a very good thing you have done, to describe, so well, the effects of Parkinson’s. I, as so many, just see you, and others with Parkinson’s, in the once-removed ‘public sphere’ and I had NO IDEA what it actually meant to have the disease. Also very good to read your musings about Tai Chi and your words about Jenny Smith!
Thanks Elspeth. I was initially uncertain about the validity of writing this post but I decided that it was important to try and throw some light upon both Parkinson’s and tai chi. Not just for my own sake but for the benefit of all. So, it is great to hear that you liked it.
I teach Tai Chi and one of my students has Parkinson’s Disease. You can clearly see the benefit that Tai Chi has on him (and his consultant is convinced!). I would recommend it to anyone. The teaching has to be adapted slightly to allow for some mobility issues, the need for additional rests and some mental blocks that come up from time to time that need inventive solutions! I am so pleased you have discovered it.
I am sure that tai chi is a fundamental factor in keeping me in good health, helping me deal with my Parkinson’s. It is always good to hear my experience echoed elsewhere. I wish that the mainstream medical establishment would stress more the importance of working with your body gently as in tai chi. qi gung and yoga. So many people could benefit. Thank you for your comment.
I’m glad you wrote about Parkinson’s and tai chi and the connections, Andy. I have a polyneuropathy that does strange things to my sensory nerves and I find that yoga is helpful in unexpected ways. I think it also helps me maintain some strength. I would try tai chi if I had instruction available. I’ve practiced yoga, in greater or lesser degrees, since I was a young teen and have had several different teachers. Right now, I’m very glad I have had teachers since I’m practicing alone while looking for a class to get involved with. I’m very glad you’re teaching a class right now. I understand about teaching.
That’s it! I’m starting up with tai chi again. In college 47 years ago I was fortunate enough to learn from my Chinese Drama teacher, a mainland Chinese man. I sort of remember it. These days I notice I’m getting less “balanced”. I lose my balance often but not so much that I have fallen. Yet. I know I need to do core strength exercise. This is it. Maybe, way over here in the Central Valley of California, I can become an instructor someday, too. For now I will just do it.
My friend Lloyd had ALS. We all watched as he slowly became a shell. Lloyd, are you in there? Eyes blink in affirmation.
My uncle Kenneth has Parkinsons. Now I know why he just looked sad all the time. He did not have the strength to will his face to look like anything else. The cruelty.
I have chronic San Joaquin Valley Fever, a fungal pneumonia, which is controlled by what I call my little blue and pink friends. They have been my daily companions since 2011. I try to think: what are the gifts that I have received from having this?
I can’t recommend Tai Chi highly enough. It has saved me, of that I feel certain.
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