Perfectly Parkinson’s

Parkinson’s has taught me that stillness and solitude work wonders for my health; this breathing space allows me to recover from the daily grind of spinning plates and flitting from task to task. Parkinson’s also gives me permission to spend time alone, but do I really need permission? Why do solitary seekers feel the need to apologise for wanting time alone?

I was always a quiet child who loved playing alone, and at the time I viewed that as a weakness, I longed to be outgoing and gregarious like the ‘popular’ kids; I felt that this would make me more acceptable to society. One of my teachers once used my quietness as a criticism and alluded to my insignificant presence in his class. Yet again, more pressure to put myself in the spotlight; even though I was perfectly content to stay in my shell.  Years later, as a teacher myself, I would never shame a child for being quiet or for not wanting to speak out; it is not a weakness.

Being an introvert does not necessarily mean that you are shy; it just means that you don’t need to dominate social situations, you like to listen more than you talk, you can be a deep thinker who loves meaningful conversation, and you need time alone to recharge.

Equally, this is not an attack on those who are very social or assertive; I hope that you will forgive me for using the much-ridiculed words, ‘Some of my best friends are…’ , and allow me to insert the word ‘extroverts’. I’d be losing out on so much if I didn’t spend time with these wonderfully entertaining, incredibly assertive, and highly dramatic friends; we are Yin and Yang, and that’s why it works.  

So, as Parkinson’s always reminds me; it’s all about a healthy balance. Our brains are not wired to handle constant activity, but we also need social interaction. Take some time to reflect on what can be added or removed from your schedule and find that balance. Ultimately, let people be themselves, especially those who society perceives to not fit in; they have so much to offer, and they don’t need fixed!

The New Year is an obvious time to reflect on the year that has passed, but it is also an opportunity to plan for the year ahead.  Living with Parkinson’s means that I live in a constant state of self-evaluation and self-improvement; I regularly evaluate what is and isn’t contributing to my health and well-being. The New Year is a time of optimism and hope; it is a time to look at the areas of our lives that aren’t working and then to make the necessary changes, it is a time to sync with our souls and do more of what makes us happy.

As I think back to the year that has gone, I wonder if I am a better version of myself compared to the start of the year? Did I achieve all that I hoped to? My answer is ‘no’, but I don’t think that this represents failure, perhaps my resolutions never happened for a good reason; life is unpredictable and can derail us.

Many of us will have been through some tough times last year, it may not have been an easy year and in no way do I want to dismiss anyone’s pain; but I would imagine that you are a lot stronger and abler to handle whatever else is thrown at you. You will have certainly learned some valuable lessons along the way; every setback gives us an opportunity to grow and develop.

When I am discontented with my life, then that is a sign that something needs to change. The New Year is a time to explore what needs to stay and what needs to go. There are things that can’t be changed, but there are many parts of my life where I have choices and options. Change causes us fear, but does that mean that we should stay in a situation that is soul-destroying?

One way that I start the New Year is by doing a vision board; this is a visible reminder of my goals for the year ahead, it can be done on a cork board, a page, or on a phone, the options are endless. The important thing about creating a vision board, is that it should be somewhere where you can check in with it regularly to assess your progress; most resolutions are broken by the end of January, but a vision board is a good way to keep up the momentum and prevent us being stagnant. I list the things that I want in my life and the things that make me truly happy. I use positive words or images from magazines, have an optimistic mindset, feel the emotion of achieving those targets and plan a life that I am jealous of.  If fear didn’t exist, then what would I do? Vision boards are positive and less about ‘giving up’ things and more about welcoming in what you desire. I think of my vision board as a prescription for happiness and a visible reminder of my goals.

Creating a vision board must be accompanied with action though, it is not a passive process! Why not give it a go? Plant that seed of hope and possibility today, then buckle up; by this time next year you might be amazed at what has happened …

Happy New Year!  

When you have Parkinson’s, you need to learn that self-care is a necessity rather than a luxury; this involves more than getting your nails done or buying yourself some flowers; it is about knowing what your body requires and then delivering on it. You need to carve out some sacred ‘me-time’ every day, set some boundaries, and make your health your top priority. Fatigue, anxiety, and a flare-up in your symptoms are all signs that your needs are not being met.

As I write this blog, it is Autumn; a season that teaches us that change and letting go are necessary. Trees know when it is time to let go of their leaves, and we too need to release those parts of our lives that no longer serve us. As we watch the leaves flutter to the ground, we are reminded how beautiful and necessary it can be to let some things go.

So, why is it so difficult to step off the merry-go-round, turn down invitations or say no to extra tasks? Why do we so often say ‘Yes’ when we are really screaming out ‘No’? Very often we are people-pleasers who are afraid of appearing lazy or selfish, and we try to do more than is possible in terms of our homes, families, friends, jobs, fitness, and socialising. We say ‘Yes’ to extra tasks at work, commit to attend events that we are too exhausted to go to, and do things that we don’t want to do out of guilt. The result is that we are frazzled, exhausted, overwhelmed, and are creating serious health problems for ourselves.

The reality is that it is not good to be on the go all the time; our bodies and brains need time to recharge and rest. There is nothing wrong with just retreating from life to ‘just be’. Why are we all so afraid of an ordinary life anyway?

It’s time to prioritise the tasks that we must do and those that we want to do. My priorities are sleep, rest, cooking healthy meals, exercising, and eliminating as much stress from my life as possible; doing this then allows me to be at my best for my partner, family, and close friends who are next on my priority list.

You are not the helpless owner of your life; it’s time to make some changes and set some boundaries. So before saying ‘Yes’, ask yourself: Do I have the time? Do I want to do this? Will this add to my life or drain it? We should be kind to others but also to ourselves, you can say ‘No’ when your motivation is self-care.

Your true friends and colleagues will understand that you are not rejecting them, and that you are not being unkind or lazy. So, kindly say, ‘I’ll get back to you’, ‘I will look at my diary’, ‘I will think about it’, or ‘I am tired and need to recharge’. You are only human and should not be ashamed of not being able to do everything asked of you; sometimes we just need to retreat from life for a while.

You will never again get this day or this time back, do you really want to be looking back on your life with regrets? I imagine that most of us will regret working so much, not spending enough time with those we love, and doing things out of guilt. Very few of us will be regretting the time that we gave to ourselves and our passions. Live a life that you enjoy, don’t spend another day of it unlived, and simply say ‘No’…

I recently started keeping a health journal that I write in religiously each morning and evening, and this little treasure trove of information has helped me to track the correlation between what I do and the resulting impact on my symptoms. I used to think that I didn’t have time to add yet another activity into each day, but there is much wisdom to be found in these pages, and journalling has now become one of the most important things that I am doing to aid my recovery.  As I leaf through the pages of this eye-opening companion, I have a bird’s eye view of my physical, mental, and emotional health; I then take ownership and try to make changes where necessary. Our bodies always give us information throughout the day, and this is one way of setting aside the time to listen…

It is widely acknowledged that journalling has many therapeutic benefits; you can clear out the clutter in your mind, set goals, become more self-aware, reflect on patterns of behaviour, and ultimately aid personal growth. The act of preserving some precious moments and making time for yourself with a journal and a pen can be incredibly healing.  Journalling is a healthy way to express your emotions rather than keeping them bottled up; this can your time to be uncensored and to spill everything onto pages, ripping out and then destroying these pages can also have a powerful purging effect and help you to let go of what needs to be released.

A health journal isn’t just for those who are ill or for hypochondriacs, it can also be used as a preventative measure against any health problems that may be starting; they can then be nipped in the bud before they build any more momentum.

Journalling is never about blame or shame, but it is about introspection. I track my nutrition, sugar intake, stress levels, sleep, emotions, self-care, exercise, symptoms, screen time, interventions that I have made, and so on. I identify where I am sabotaging my health, and I explore what has triggered my symptoms by looking at when they begin and end; this then encourages me to be more aware of my habits throughout the day. I have even written a letter to myself from my symptoms to help me to reflect on what my body wants me to know. I try to find meaning in each page and there is always a lesson to reflect on at the end of each day. On the days that writing is difficult, I draw, or just scribble; this is my way of letting go of striving for neat and tidy perfection.  

However, there can be more to journalling than tracking health; I record quotations that inspire me, mantras and affirmations, things that I’ve done that day, and future goals. Some people journal to record fitness goals, as a tool to develop their careers, or even to write their own life-story for their children. The options are endless, the important thing is that you are taking time to reflect and trying to find solutions to problems. You may find that there is quite a lot that you can do to help yourself and improve your circumstances where necessary.   

My hope is that those of you who decide to start journalling will find it as enjoyable as I do. Your journal can become your survival manual through highs and lows, a listening ear, and a tool for transformation. Just start and see where your pen leads you, after all, if it helped Adrian Mole and Bridget Jones to make sense of life, it might just do the same for you too…

I recently returned from an amazing holiday in Portugal; this was my first trip abroad in a few years, but the week leading up to the trip was anxiety ridden and I was worried sick about travelling with mobility issues. I desperately wanted the flight to be one of the many that are currently being cancelled by airlines, but it wasn’t to be.  I got to the airport, and it was a disaster; I scoured people’s faces for confirmation that they were mocking me, my anxiety about the walking involved exacerbated my symptoms, all I wanted to do was to fit in, and I crumbled. However, I eventually arrived at the hotel and soon started to relax, consequently I was mostly symptom free, and had the best holiday that I have ever had. To think that I almost missed out on this wonderful experience because I was worried what people thought about me…

The beautiful book, The Top Five Regrets of the Dying by Bronnie Ware, shows that one of the most common regrets of those who are in palliative care is that they wished they had the courage to live the life that they wanted. Many of us seek the nod of approval from others, and seeking external validation becomes more important than making ourselves happy. What if you want something else for yourself?  Your own approval must be all that matters!

My trip to the airport taught me that showing my true authentic self requires bravery, and it might make me different from others, but the rewards are just fantastic! Living the life that I want will require courage, but I never want to look back and realise that I missed out on doing what I loved just because I played it safe and wanted to blend in, sometimes I will have to find the courage to stand alone.

Are you also hiding your truest most fantastic self from the world because of what others will think? People-pleasing is certainly no way to live, and you shouldn’t feel guilty or self-indulgent for doing what makes you feel alive and filled with joy. We have been hardwired to meet social expectations but sometimes we must live life our way regardless of what people will say.

Just like me, some of you may need to step out of your comfort zone to achieve your goals.  I was very nervous about starting this blog, I was full of doubt and insecurity, but my goal was to raise awareness, and I wasn’t doing it as a popularity contest for ‘Likes’. The things that I write about are the things that I most need to learn, and if something I say can help even one person, then I am happy. The reward once again outweighs the fear.

What would you do if you didn’t care what people thought? Are you going to do it now or regret it later in life? Don’t underestimate your capabilities.  What’s the worst that can happen?

I know that if something scares me then I need to do it; so, I have booked the same holiday for next year, there’s no going back for me now. We only have so many available days left, think about how you want to spend them. Fitting in is easier but think of the opportunities that you will miss out on. I might stumble at the airport next year, I may get stared at, and I might feel vulnerable, but this is who I am; the price is high for me, but the destination is great!

I often wonder why it took me so long to feel comfortable recognising that I had a disability; I suppose that it is because ‘disability’ is a word that can make people feel uncomfortable, and it is seen to be a tragic affliction. I was also worried that people would see me as a helpless victim who should be pitied or patronised.  

Merely talking about disability can cause people to become flustered; they worry about what words to use and what terms are viewed as acceptable. I don’t claim to speak for everyone who has a disability, others will have their own opinion on the issue, I merely want to start a conversation; I am an expert on my own situation, but nobody else’s. I want to say from the outset that I know that it is difficult to understand a situation that may not impact your life, and that I am not here to judge anyone; we all make mistakes, and I am still learning too…

A disability is a condition that limits your ability to do certain tasks or participate in everyday activities. I choose to use the word ‘disability’ in relation to my condition, but others may not, and I respect their choice. Words are important, and many people prefer to be called ‘a person with a disability’ rather than a ‘disabled person’; this recognises that they are more than their disability, and that they are people first. However, others feel that this is ignoring who they are and downplaying it; disability is not dehumanising or negative, and it is to be celebrated. Each person has the right to choose the language that they are comfortable with.

However, some words and terms are quite simply outdated, hurtful and offensive; for example, saying that someone is ‘not normal’, or asking ‘What’s wrong with you?’. It goes without saying that disability is not a joke or an insult, and that these slurs can cause a lot of pain to people. People with disabilities have a history of being locked away in institutions, of being part of freak shows, and of having to endure people laughing and gawking at them; so please don’t undermine their desire to be respected and treated with dignity! I choose to make light-hearted jokes about my condition with those close to me (I’ll do anything for a dopamine hit 😊), and I have promised many of my students that I’ll give them a ‘backie’ on my mobility scooter if I ever need to get one, but that has been my choice based on the level of familiarity that I have established with those mentioned. I try to use humour to remove awkwardness around my condition and to normalise conversations about Parkinson’s, but it is under my terms.

None of us know when disability may enter our lives; I wasn’t born with a disability, but I acquired one in my early 40s. I have a disability that is both visible and invisible, and many of my symptoms cannot be seen by others. However, I am still a productive member of society, I continue to work, I do need extra support, but I am not a burden or a complainer, and my rights should be equal to everyone else’s. I should not have to worry about issues of accessibility; people without a permit should not be parking in accessible parking spaces because they are just popping into the shop for a minute, or because they couldn’t see anyone who needed it. It might be inconvenient for you to have to walk further, but I would give anything to be able to do that walk. Equally, people should not assume that I don’t need accessible parking just because I am in my 40s, have tried to dress well that day, and have Beyonce on full blast; disability does not have a dress code. I am not looking for sympathy, special treatment, or perks, just awareness.

 I am always happy to answer questions if they are asked respectfully; I am passionate about raising awareness and I have chosen to put myself ‘out there’, but others have the right to privacy if they so choose. I also appreciate people offering to help me, sometimes I need the help and other times I don’t, but I always acknowledge it as an act of kindness. However, I would advise that if someone kindly states that they can manage, then just respect their wishes, and don’t insist on stepping in to rescue or disempower them.  

I want to once again stress that these thoughts are just my perspective on disability, and I too have said and done things that I wouldn’t do again; I do better when I know better.  I am now trying to be more aware of how my words and actions can impact others, but it is an ongoing process, and I am constantly learning. I am unable to cover every issue, and I don’t have all the answers, but my hope is that this blog will encourage others to reflect on what it means to have a disability in an ableist society, to understand the powerful ripple effect of informed conversation, and finally, to call out unacceptable behaviour when it is safe to do so.

Thanks for listening!

There is much wisdom to be gained from exploring the symptoms of an illness; I used to curse Parkinson’s for disrupting my life, but I now understand that it was just my body’s way of communicating with me. My unbalanced lifestyle was the offender, not Parkinson’s! I was forced to change the way that I was living, and I am now a very different person compared to when I was first diagnosed.

If I want to heal, I believe that I need to communicate with my symptoms, and until I learn what lies beneath each of them, they will not be going anywhere. If my body is trying to get my attention, I need to reflect on what it wants me to change. There are too many symptoms for me to explore in a short blog, but I have selected just a few to illustrate my point. So, here we go:

Parkinson’s causes in-balance, and my body always reminds me when life is out of balance as my symptoms tend to worsen. I am a control freak, and so was given an illness that made me lose control. I am a perfectionist, and consequently I lost the ability to do things perfectly. Is Parkinson’s protecting rather than attacking me?

I believe that my rigid body is telling me to relax and go with the flow. I am not someone who finds it easy to loosen up, and my tight muscles are a reminder that I have been living in a state of constant tension. My hands clench into a fist when I am stressed, it’s as if I am gripping on for dear life, and so I need to let go of to-do lists and pushing myself beyond my limit. My heavy limbs are clearly asking me to lighten up; and if I start to relax, they may decide to join me. My symptoms are screaming out that it’s time to unwind and let loose!

There are times when I find it very difficult to walk, especially when I have not allowed myself to get enough rest; my dragging leg is letting me know in no uncertain terms that I am still veering off the track to recovery and not moving forward. My feet are unstable because I am, they are not grounded because I am not; and so, I need to take the appropriate steps to get back on my feet. Despite the many changes that I have made, my legs are showing me that I’m still not moving in the right direction to the extent that is needed, and when I don’t slow down, they will step in and make me do so. Hurrying about is what got me here, I was even in a hurry to get Parkinson’s, and so my body has now made it impossible for me to rush at anything. Even my shallow breathing is telling me to stop and catch a breath. My body might just want me to know that I am still stuck in the same old rut that got me here, and I will be able to advance when I stop going back.

I absolutely believe that my brain is begging me to bring more fun and laughter into my life; it has stopped make enough dopamine to meet my body’s needs, this chemical has many functions, including creating feelings of pleasure. I therefore need to start making my own dopamine by doing more things that make me happy. Laughter can increase dopamine concentrations by up to 50 times; it’s clearly time to take life less seriously.

 Old habits are hard to break, but if I stay stuck in my old ways, I will never progress. I believe in addressing the cause as well as the symptoms, and my body did me a favour that I refused to do for myself. I am trying to continuously observe my symptoms and reflect on what my body is asking me to do. I have immense respect for my body’s innate wisdom, and so I must make listening to it a priority.

Is your body also trying to tell you to make changes? What are your own symptoms communicating to you?

Healing is not linear, and it is a lifelong process. Very often I take one step forward and two back (literally), but I keep showing up and doing my part. My symptoms will always flare up when I slip into old habits, and so, I need to question each part of my lifestyle and every choice that I make. It’s time to rebalance and leave behind self-destructive habits. As far as I am concerned, healing is on its way; I trust in my own ability to heal myself. I will not be healed overnight but I am certainly laying the foundation to do so…

I have always wanted to be a yoga teacher, and up until a year ago I was following this dream; I am passionate about the benefits of yoga and wanted to share this with others in the Parkinson’s community. However, my body had other ideas; last year my health declined quite badly, I was exhausted and overwhelmed, and I decided to leave the teacher training course. Whilst the purpose of yoga is certainly not to reach the perfect posture, I was just unable to move to the level needed to teach others.

I was devastated, I loved the course and I felt like a failure. We are often taught that quitting should never be an option, but Parkinson’s, which is always my greatest guide and teacher, was telling me that I was out of kilter and off course. I had spread myself too thinly; I was stressed and irritable, and I could clearly see that I was failing. I spent years ignoring messages from my body and vowed never again to let the demands of life undermine my health, I knew that giving up was the right thing to do.

Yoga teaches us to prioritise peace of mind, not to punish ourselves for what we can’t do, and most importantly to listen to our bodies when they say ‘no’. My own personal practice of yoga continued to be my sanctuary and it helped me to be at peace with quitting; warrior pose reminded me of the need to defend my health, tree pose highlighted the need for balance, and corpse pose taught me the importance of rest and surrender. I had clearly been missing the point! Although I had failed at achieving this goal, I was given the opportunity to do a lot of soul searching, and realised that this just wasn’t my path.

Sometimes we must persevere, and sometimes we need to quit, but how do we know which decision to make? Well, for me it’s straightforward; my Parkinson’s symptoms will always guide me as they are trying to protect me. You too might find the answer by looking at your own situation and its impact on your health; anything that damages our physical or mental health needs to be re-evaluated.  Quitting is often viewed negatively, but for me it was the wisest thing to do. I feel that we need to develop a healthy relationship with quitting as it might just be the right decision for our health, we can also learn from our mistakes and then do things differently in the future.  

It’s certainly a dent to the ego to be seen as a quitter, but those who continue to ‘do it all’ whilst their lives are in turmoil, are not really winning either. Many of us are afraid of being seen as unreliable and don’t want to let others down, so we just let ourselves down by doing what we ‘ought’ to do! However, when we take care of our own needs, we are better parents, partners, friends, and employees. Why put the brakes on this?

I’m now at the stage where I see failure as a redirection. Perhaps I was chasing something that I thought I wanted? Maybe my time and energy could be more helpful elsewhere? Problems often come along to remind us that something needs to change, and no experience is wasted.

However, I fully accept that it’s not always possible to walk away from every situation that isn’t going well, and maybe the answer is not to quit but to make changes or to try to do more to succeed.

I’m sure that if we look back over our lives, we can see that failure often lead us down a much better path and we managed to survive. Sticking our heads in the sand will not cause problems to go away, and if we’re not part of the solution we are part of the problem. Remember that dreams are not time bound, and you can always try again.  Listen to the whispers and nudges from your body, it always holds the answer, but choose to follow the signs now before you’re forced to do so in the future…

April is Parkinson’s Awareness month. This year awareness is being raised through poetry. I have posted an audio of my poem and this is the written version…

There was a young woman called Melanie O’B,

Who, at the age of 41, was diagnosed with PD,

Up until then life was ever so busy,

and so, her body screamed, ‘Stop and just listen to me!’.

Those first few weeks were filled with so much fear,

She and her loved ones shared many a tear,

Dreams and plans were completely shattered,

This was a wake-up call to focus on what actually mattered!

Most of the time she will shuffle and stumble,

When tired, her words are often a mumble,

Walking has become an embarrassing slog,

Her uncooperative left leg feels like she’s dragging a log.

Her body feels ever so tired and weak,

She is told that the long-term prognosis is bleak,

Each movement lost is a theft,

The constant anxiety leaves her feeling utterly bereft.

However, she still dreams of the day when she will take a full stride,

Oh, how she’ll be beaming with such pride,

She might even get a good night’s sleep,

No more lying wide-awake counting those pesky wee sheep.

She’ll say goodbye to hiding away,

Her limp will become an elegant sashay,

She might even manage to wash and dry her own hair,

but, best of all, people will no longer feel the need to stop and stare.

She never stops holding onto hope,

refusing to give up and just mope,

Yes, she will continue to slip and fall down,

But, she will always get up and straighten that crown!

She’s learned so many things that she needed to know,

So, she will try to simply trust and let go,

Parkinson’s is no longer her greatest enemy,

After all, it has created a much-improved Melanie O’B.

Melanie O’Brien

April is Parkinson’s Awareness month. This year, awareness is being raised through poetry, this is my story…