Life is hard at the moment. My Parkinson’s symptoms have recently become a lot worse. I have been forced to cancel the tai chi classes I have been teaching for the past six years. I am not up to taking the dog for a walk anymore. I don’t go out much and when I do it’s a struggle. People ask “How are you?” And you want to cry and scream but it takes too much effort to explain why, you haven’t got the energy, you’re too proud to admit that you need help, so you say “I’m ok.” But you’re not ok. Far from it. Things have not been ok for a long time.
So, I wanted to write something down. To explain what we are going through at the moment. To go public and tell the truth. It’s too hard to repeat it over and over to anyone that asks. Soul destroying. so, I am going to do it once, to write it down, record it. Then, if anyone asks and genuinely wants to know I can refer them here.
But, where to begin?
Well, the first thing that I want to emphasise is that whatever I am going through, I am not going through it alone. I may be the one who has Parkinson’s, but it effects my wife, Jo, just as much as it effects me. Perhaps more so. She has the option to walk away from it. But she chooses not to. She chooses to stay and support me despite the huge personal sacrifices she has to make in order to do so. Everything we do,we do as a team, a partnership. Everything I have done in my last twenty eight years of my life, I have achieved with Jo’s help and sacrifice. I am eternally grateful and in her debt. So, when I write about my Parkinson’s, I have to explain how it impacts upon Jo and I as a team. When I speculate about the best way forward, I have to think about the impact of any action upon the both of us.
My condition has got significantly worse in the past five weeks because I made the decision to try and wean myself off one of the drugs I take for my Parkinson’s.
Putting it very simply, Parkinson’s is caused by a lack of a naturally occurring substance in my body called Dopamine. Dopamine’s function in the body is to allow signals for movement to flow smoothly from the brain around the body. If dopamine is missing the signals get jammed and you get the symptoms typical of Parkinson’s – tremors, slowness, freezing, stumbling, loss of co-ordination and fine motor control.
I take two drugs for my Parkinson’s. One is called Sinemet, a form of levedopa, a sort of synthetic dopamine. The other drug, the one I am trying to reduce, is Pramipexole. It’s purpose is to help my body make the most of the dopamine that is in my body. It is a dopamine agonist. Now, there is a significant body of evidence that dopamine agonists can have severe side effects. These are mainly psychological such as compulsive or obsessive behaviour, hypersexuality and addictive behaviour. Sufferers have developed addictions to gambling, porn, shopping, run up huge debt as a consequence, become bankrupt, lost their homes and behaved in increasingly anti-social and self-destructive ways. There is a burden of shame around these behaviours so sufferers feel unable to talk about their experiences problem and it becomes worse.
My symptoms were not quite as dramatic as these but I have been taking Pramipexole for nine years and I was becoming increasingly aware that I was experiencing side effects and that they were becoming more and more intrusive in my life. It’s difficult because it’s not the sort of thing people notice when they meet you on a casual basis. The effects are invisible. Friends probably didn’t notice any change. But Jo did. So, did my son, Sam. It was becoming increasingly difficult for them. At home, I withdrew more and more from normal family conversation. I would become obsessed with a detail of a conversation and disappear into my i-pad to research it. I spent more time tapping at the screen than talking to my family. I would play the same piece of music over and over again all day. I became obsessed with charity shops and had to “find a bargain” every day. I came home with all sorts of rubbish. My behaviour was becoming increasingly anti-social, obsessive, insular and difficult to live with.
And I was aware, within myself, that things had been changing. I was finding it difficult to concentrate in a normal way. Obsessive concentration is not normal. It is like getting stuck in one place and being unable to move on. It has been five years since I read a novel. I just got stuck in the first few pages, couldn’t let go of the first thought in order to move smoothly on to the next as following the plot of a novel demands. I have a degree in English Literature. I taught English for many years. So, this was a big loss to me. But it was more than that. I just use the novel example because it is a concrete thing that people can understand. Much more upsetting for me was the feeling that I was losing the ability to conduct normal social relations with my wife and son. I was slowly losing them. It was like a mist had fallen upon my mind and was separating them from me. It was frustrating and depressing. I got angry about it and took it out on Jo and Sam.
So, I decided that I had to do something to break the negative cycle that I had fallen into. It just so happened that at this point I had a change of Neurological Consultant. I went to the hospital to see him for the first time and discussed the issue with him. He gave me a thorough examination, said that I was coping with my Parkinson’s very well. I had little outward physical signs that anything was amiss. I have studied tai chi since being diagnosed and have learned techniques to deal with the physical symptoms of Parkinson’s. I can stop my tremor, move in a coordinated manner and generally mask the symptoms. It doesn’t mean they are not there. It takes a great deal of concentration, application and practice to be able to do what I do and control the symptoms. I cannot keep it up all day. I have learned to manage my time well. I conserve energy so that, when I am out in public, I am able to function fairly normally. But that is not the whole picture. When I get home after an evening activity I collapse in an exhausted heap and don’t want to speak. In the mornings, I stumble and shuffle around the house in silence. I can not pee standing up. The hand aiming my penis shakes and trembles and there is pee all over the floor and all over my pyjamas. The general public get the best of me. Jo and Sam see a very different picture. It has been like this for years.
My consultant agreed to my idea of reducing the Pramipexole and wrote out a plan. I then had to take the plan to my GP so that he could write a prescription. Then to the pharmacy so that could understand what they were being asked to dispense. It took a few weeks of going back and forth between agencies until I had the drugs I needed to begin. I waited until the Christmas holidays when I usually take a two week break from my tai chi classes to begin the plan.
Coming off a drug I have been taking for nine years was always going to be challenging. I expected that. I have gradually been reducing the dose over a period of five weeks. The physical repercussions have been debilitating for me. The main effects have been:
- Extreme fatigue. Everything is an effort. I have spent most of the past two weeks in bed. Consequently,my social life has pretty much disappeared. I just don’t have the energy available for social interaction.
- Inability to speak. My swallow reflex has gone. Saliva builds up in my mouth and i have to make a conscious effort to swallow each time before I can speak. Plus I have to work hard to consciously raise the volume of my speech and to articulate clearly. Left unattended, my voice is a mumbled whisper. Every time I have a conversation with someone it’s like having to do a presentation at a meeting. It is not a relaxing diversion. It’s hard work. I used to teach Drama. I used to lead school assemblies. I regularly ran workshops and courses for halls full of people. I have always been a performer, a story-teller. These days I prefer to be left in silence. Earlier this week, when Sam Skyped us from his flat in Manchester where he is studying Drama, I was unable to speak to him. We had to resort to sign language. It was distressing for us all.
- Disrupted sleep. I dread the nights. Restless legs, permanently congested sinuses, muscle spasms in my arms and shoulders combine to wake me repeatedly through the night. I rarely sleep longer than three hours at a time. I no longer share a bedroom with my wife. She is a light sleeper and she has to get up for work so I sleep in the spare room so as not to wake her. Our bathroom is next door to her bedroom and night-time visits there disturb her sleep so I pee into a bucket in the spare room.
- Increased tremor in my right arm. This makes performing everyday tasks like preparing food or making a cup of tea difficult and potentially dangerous. Several times in the past few weeks I have scalded myself whilst attempting to drain pasta or stir a simmering soup. I can chop vegetables but I have to do so very carefully. I have to use particular knives and utensils that I can grip well. Over the years I have developed techniques and improvised a variety of aids that enable me to function in the kitchen (ways to hold pans, open tins and packets) but at the moment the increased tremor means that I am very slow. It takes me three times longer than Jo to prepare a simple meal or make a hot drink. Even a simple thing like pouring breakfast cereal into a dish ends up with cornflakes all over the work surface. And there are times when I am too tired, my tremor is beyond control and I cannot prepare a proper meal so I eat biscuits instead.
- Poor coordination. My body feels continually “disconnected.” It is a sensation that is hard to describe. It is as if my brain is not fully in control of what my body is doing. Like being continually drunk/confused and wanting desperately not to be in that state because there is something important that you need to get done. Anything that requires a measure of eye to hand coordination becomes problematic – doing up shoe laces, buttons, getting pills out of packets, pegging out the washing. On a good day these sots of activities take a long time. On a bad day they are impossible. So, this week has been a bad week and I have not left the house for four days. I haven’t washed or got out of my pyjamas for that time. When I clean my teeth I use an electric toothbrush as using a normal toothbrush is often painful but sometimes I can’t turn it on and if Jo’s not around to turn it on for me, I just don’t bother. I do still drive a car but poor coordination makes this dangerous so I only do so if I have to and am feeling well coordinated. Jo does the majority of the driving nowadays and I prefer it that way. It means that I can conserve my energy for the task at hand.
- More time “Off” than “On.” The feeling I have described above is known in Parkinson’s world as being “OFF.” You are “ON” when the medication is working well and you feel relatively “normal”. These past five weeks, I am OFF when I wake up. I take my first medication at 8am and by 9am, on a good day, I am ON. This lasts till around 11am on a good day. Then I am OFF until, having taken my next medication at 1pm, around 2pm it kicks in . Then, I am ON with luck until 4pm. Then OFF. MY next meds are at 6pm. Hopefully I am then ON until 8pm. I take my final meds just before I go to bed to try and help me through the night. So, you can see that using the waking day I get maybe 6 hours at best when I feel ON. That doesn’t mean I don’t feel awful or have any symptoms – it just means that I have a degree of functionality that I don’t have for the other 9 hours. To be honest this has always been the case. It is just that, in the past five weeks, I have been more extremely OFF than before. But it is always the case that I adjust my meds according to the demands of my day. If I have a commitment or have to be somewhere at a particular time, I gauge when I take my meds so that I am ON when I am visible to the rest of the world. But, we have to pay the price when I get home and I am OFF for the rest of the day.
Thankfully, after five weeks of increasing disability as I have gradually reduced the Pramipexole, the side effects have stopped. It has been like a veil has been lifted in my mind. My mental processes definitely feel freed up and I no longer feel trapped in obsessional thinking ruts. In the past five weeks, I have read five novels. It feels like I have been set free from a prison I had barely noticed grow up around me.
I have now reached a steady state from which I can monitor my condition, make a note of patterns of symptoms and then work with my Parkinson’s Nurse to try out additional drugs that might improve my quality of life without the unwanted side effects. I am sure that, in time, I can establish a better equilibrium that will give me a decent quality of life for longer. I am a positive person and always try to look forward with hope. Nevertheless the experience of the last few weeks have reminded me of few harsh truths that I cannot ignore.
- Parkinson’s is incurable and degenerative. Ultimately, my condition is only ever going to get worse and the process of reassessment of symptoms and adjusting of medication that I have been describing is ongoing and permanent.
- The way that Jo and I have been coping with life with Parkinson’s up to this point is no longer working and needs to change. We have been trying to carry on as if everything is ok when the reality is that the cracks have been opening for some time and we are now at breaking point. We need to make major changes. It is important for me to point out that, though my symptoms have worsened recently, our family life with Parkinson’s has never been ‘normal’. It has been a struggle for a long time. We have just been very accomplished at keeping it hidden.
- We need to stop being proud and ask for help. Without help, we will go under.
So, this is what we have decided we need to do.
- We need to apply for financial assistance from Government. We have never applied for benefits before. We have existed on my modest Sickness Pension, our savings and Jo’s earnings. Jo presently does five different jobs – she does Shiatsu treatments, runs Creative Therapy for Carers, works with Adults with Additional Needs, works with Young People At Risks and puts on Arts and Creativity workshops for the general public. She also makes and sells her own art work and jewellery. She juggles all these roles alongside being a carer for me at home. When she is at home, I am better – no doubt about it. When she is around and well it makes me well. But all her different roles involve giving out a huge amount of energy. It is not a sustainable situation. I need her to be able to focus on being my carer. In order for her to be able to do that, we need a measure of financial security that doesn’t rely on her working five jobs that all draw on her energies. She needs to be able to look after herself, so she can look after me.
- I need to draw back on my own commitments. Up until recently I have been teaching a tai chi class four days a week. If I am honest, that has been becoming more and more of a struggle. I need to stop teaching all those classes. I need to make it clear that, if I am having a bad day, I cannot always fulfil my commitments. Parkinson’s is by its very nature, unpredictable. Living with it is an emotional roller coaster for the patient and his/her family. You never know how you are going to feel when you wake up. This is the same for everyone of course, it’s just that most people will feel fairly confident that when they wake up in the morning, they will feel capable of having the energy to dress themselves and drive to work. I can never guarantee that is going to be the case for me. If I could predict how I am going to be each day, I would still be at work. But I cannot. I have to accept the consequences of that.
- Together, Jo and I need to develop a way of living that keeps us both well for as long as possible. I have limited time available when I am able to function well. I need to make careful decisions about how I use that time. That’s the same for everybody, I guess. It’s just that Parkinson’s makes you very aware that your time and energy are not unlimited. It is one of the gifts of Parkinson’s that it reminds you very pointedly, on a pretty much daily basis of your own mortality. You don’t want to waste time on nonsense.Jo and I have both spent our lives in jobs that give back to others. We have been teachers in challenging state schools, done voluntary work overseas, run classes and workshops to improve people’s health and well being. In our holidays we have gone on treks to raise money for charities. It is important to us to live this way and we want to find ways to continue to do so. We both have a strong work ethic and we are proud people. It is not easy for us to ask for help. It is our hope that, if accepting some form of benefit will give us some financial security, we can find ways to continue to give back to our community and society in general. I want to concentrate on two main things: Firstly, I want to help more people with Parkinson’s. i want to do this in two ways: by showing how tai chi can help to cope with symptoms and by raising money for research. Secondly, I want to develop my writing work. Hopefully, these two aims will at times overlap and assist each other.
I have spent several days writing this – not in order to gather sympathy but to try and promote a better understanding of Parkinson’s and what it means – for the patient and the family around them. Parkinson’s is not just about old people getting a bit slow and shaky. It is way more complex than that. My case is not unusual – everyone with Parkinson’s faces their own peculiar set of challenges – physical, emotional, financial, personal. I hope that, by writing this piece, I have increased your understanding of what those challenges might be. If we meet, don’t feel you have to comment on this or treat me any differently. I just wanted you to know what has been going on.
Its really good that you are engaging with all these problems and that it has, from what you say, strengthened your relationship. I certainly have not done so well – not that its a competiton. Thinking of you.
I love to read what you have written as you have a very powerful but calm way that you come across. This has made me cry not just because if the shit time that you are having but because you still put others first and increase knowledge of this illness. I sincerely hope that you get the financial support that you and your family deserve so that you can continue to live the best life that you can with those you love. You are and have always been a very inspirational man. One I had great pleasure of working with.
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Andy my husband has Parkinson’s he was diagnosed almost 7 yrs ago at 48. I can identify with so much you have written. Thanks for your honesty, just as you said we too show the world a very different picture of what it is like behind closed doors. I hope you get the financial help you both so badly need so as the next stage of life can help you enjoy the quality time together and as a family you both so deserve. Angie
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Hi Andy, I have just read your article and it is a great insight into what you are all going through. Until I saw Jo last night I was unaware that things had got significantly worse. We are all in our own bubble and forget what others are going through. Puts George’s English failure into perspective for me and think about the more important things in life. Just remember if you need anything you have a mass of local friends who would do anything for you but you have to ask and we will come but we are not always very good at knowing what we should do! But we do all want to help xxxxx
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Thank you so much for sharing this Andy. Jo mentioned you have had a difficult time changing your meds since Christmas and getting this window into the detail of what is happening for you all is really helpful. I had no idea life was this tough for you and it is really good to know. It is unusual to get this glimpse of someone’s reality. I love that you are going to focus on your writing. The world needs more words from you.
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Andy, thanks so much for your courage and honesty in writing this piece. I felt very moved by it. It has certainly helped me to a deeper understanding of the physical, emotional and practical effects of Parkinson’s disease on the person and their family. II feel that now have adeeper appreciation of what 3 of my friends and their partners are our might be going through, and hopefully cam be a more sensitive and supportive friend. I intend to pass it on to a couple of people.
Wow. I am blown away. I have never read such a good, terrifying description. My mother’s brother had Parkinson’s and my good friend Bob in Berkeley, CA has it, too, as well as Lyme disease. He used to be a wonderful pianist. He has a blog (which he writes through voice command). I suppose you’ve done all the research. Recently Bob sent me this.
I would contribute if you started a Patreon page. We get by with a little help from our friends.
Finally, we all could use a gift of this kind of insight. There is too much BS in the world. Fight the power. – Old Renee in California
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Thanks Renee. I posted a link to the piece on my Facebook page and Jo and I have been overwhelmed by the response. Human beings are much better than we often credit ourselves. Perhaps there is hope for us yet!
The link between Parkinson’s and stomach is fascinating. My wife says that, in shiatsu, Parkinson’s is viewed as an imbalance in the stomach region.
A Patreon page – now there’s an idea. Thank you.
You’re very welcome. And there is hope. It’s lingering in the wings waiting for us to raise the curtain. That’s very interesting about what Jo says regarding shiatsu. I did not know that.
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So bravely written, Andy. You and Jo truly do ‘fight the good fight’. Am humbled by what you have written here and to know what you’ve both been going through.
Andy, I recently heard of an inexpensive therapy which I hope will help many of us. There is a link on my post ‘Another stone to turn over’ It looks promising to me.
[…] I wrote my previous update, “Removing The Mask of Parkinson’s”, I was at a pretty low point. Changes I had made to my medication had severe negative […]