Knowing when to Quit

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…

Hope Remains

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

Getting Creative

There is an artist inside all of us, and within the Parkinson’s community, the healing power of creativity is well recognised. Motor skills may diminish, but artistic capability often remains and can even improve. Creativity soothes the busiest of minds as it offers respite and allows us to forget ourselves for a little while at least. Many people with Parkinson’s often find that they take up writing, painting, cooking, knitting, crafting, or learning an instrument; just because they hadn’t previously tapped into these gifts doesn’t mean that they weren’t there all along, they were just waiting to be unwrapped.

So, how does creativity heal? Well, most of you are probably aware that the brain is made up of two hemispheres; the left hemisphere oversees the right side of the body, it is logistical and analytical, and the right hemisphere controls creativity, emotions, imagination, and the left side of the body, which, incidentally, is my weak side. I often wonder if my weak left side an outward sign of what needs more attention in my right brain? It seems that I need to encourage my right brain to heal, and I can try to do this by developing right brain functions such as creativity and imagination; and if I can rebalance my brain, I might be able to rebalance my body.

Armed with this information, I decided to give my right brain more tasks to do, and so, I started this blog. Writing was my way of raising awareness of Parkinson’s and doing something positive with the pain. I write to empower myself and others; it helps me to know that I am giving this illness a purpose and contributing what I can in my own little corner of the Universe. Nothing is ever wasted…

I am not saying that creativity will lead to immediate recovery, but I do believe that it is one piece of the healing jigsaw. GPs often encourage patients to attend art and music lessons to help relieve stress-related complaints; such therapeutic activities clearly make us healthier and happier. The act of taking time for yourself to create can help the brain’s faster brainwaves to slow down, and anything that helps my Parkinson’s brain to move out of high alert is more valuable to me than gold.

The great Billy Connolly sadly retired from live performances due to Parkinson’s, but he is now creating amazing paintings and sculptures; his artistic career is soaring. Treasures are clearly waiting to be unleashed in all of us and we all have a story to tell. Could this blog be a sign for you to start exploring your own creativity?

Although, you may find that being creative is not always enjoyable, especially if you decide to share your work with others; you will doubt yourself and worry how your work will be received by your audience. Sharing my journey with strangers opens me up to looking like an attention seeker or a narcissist, but I know why I write, and that is to take back control and nourish my soul, not to play the victim or for attention. Birds don’t sing for the praise; they sing because they have a song inside of them…

We often resist what we need most, and I would encourage you to just start making something; do the thing that lights you up, then the ideas will start to arrive. We are all healing from something, and creativity is just one way to release tension and transform pain, or you can just keep it all bottled up inside. Start a journal, take photographs, redecorate a room, cook something from scratch, learn an instrument, take dance lessons, go to an art class, start gardening, the possibilities are endless! Step out of your comfort zone, follow your bliss, and do what you love. It’s time to get to work; you don’t have to save the world, just do it for you!

Getting Comfortable Being Uncomfortable

There is nothing like a good walk to clear the mind and raise our spirits, yet, walking in front of people is a daily challenge that literally leaves me paralysed and frozen; fear shows up, my heart races, and I feel like I am going to war. I become self-conscious and awkward, I worry that I am being looked at and judged, and with Parkinson’s, where the head goes, the body follows. So, I don’t walk, and I remain stuck in a rut.

How do I become unstuck? Yes, Parkinson’s is an obvious part of the problem, but so too is my perception and the stories that I tell myself. Fear has become a habit. I am not dying, I am just doing something that my body struggles with, it is difficult but not impossible. Yes, some people are staring, some may even think that I am drunk, but I have the choice of betraying myself by never leaving the safety of my house again, or I can decide to face the challenge and their glances head on. Every difficulty that Parkinson’s sends my way is an opportunity to grow and improve, and so, I am being given a lesson in breaking through my fears and embracing difficulties. I believe that everyone is afraid of something, and we all have things that hold us back, I am writing this blog in the hope that you too will be encouraged to feel the fear and do it anyway.

The longest journeys begin with a single step, and I have accepted that I need to work twice as hard to achieve that step. I must plan each and every movement; shoulders back, chest out, chin up, heel first, lift my dragging leg that feels like it has a sandbag attached to it, transfer my weight from side to side, and try to ignore the mounting anxiety. I move differently from some people, and rather than trying to hide my symptoms, I am trying to become comfortable with being noticed and stared at. By allowing myself to feel discomfort, the more discomfort I will be able to tolerate, and the more inclined I will be to continuously push myself out of my comfort zone.

Life doesn’t always give us what we want, and sometimes it seems to be one obstacle after another, but difficulties will cross most of our paths; relationships can end, financial hardship might strike, and serious illness may enter our lives. Then what? We can either allow ourselves to be stopped by setbacks, or chisel away at the problem day by day. We can listen to fearful thoughts, or flick them away, accept that it will be hard, and get comfortable with being uncomfortable.

It is important to stress that I am not looking at this through rose-coloured glasses; some of the obstacles that we face may be impossible to move, and some things are bigger than us. We have every right to get sad and even mad, but then we have no choice but to try to make the best of things, if we cannot solve the issue then we can at least try to make it better. I don’t have the luxury of ignoring my situation, I must keep going no matter what it takes; I need to put one foot in front of the other and keep on trying. I often think of the Friends’ episode where Phoebe runs in an unusual manner, Rachel is embarrassed that people are looking, but Phoebe doesn’t care as she feels so free; I walk in an unusual manner, but just like Phoebe, I can’t let that stop me.

‘The cave that you fear to enter holds the treasure that you seek’.

Joseph Campbell

To be good at something takes practice, patience, and persistence, and the same applies to overcoming obstacles that are both real and perceived. We cannot cross our fingers and hope that everything will sort itself out, we can act or else stand back and do nothing. Control what you can and let go of what you can’t. I am starting step by step; my 5-minute walk will become a 10-minute walk, some days it will be a limp and a hobble, but most importantly, I am working at it. I believe that it can be done, and I am determined to rise above my mental blocks and self-imposed limitations. I am throwing all that I have at my problem and breaking it down into small steps – literally. Can you do the same?

If there is no struggle, there is no growth, and I know that Parkinson’s has been the making of me. Some may say that walking well again is impossible, but their limitations are not my own. The power of placebo is notorious with Parkinson’s, and I am preparing for my finest hour. You too don’t know what you’re capable of until you try, don’t deny yourself the life that you deserve. It’s time to step up!

Are You Having a Laugh?

Nothing beats a good laugh, the sort of laugh where tears are streaming down your face and your stomach aches. It is often said that ‘Laughter is the best medicine’; and it really does do you the world of good, it is incredibly healing for the body, mind, and spirit. Whilst I don’t want to create false hope by suggesting that it is a miracle cure to illness, it is important to acknowledge that there is much scientific research to show that laughter has immense therapeutic value. Humour can provide reprieve, refuge, and much-needed hope for the weary soul.

Some of you may have read the wonderful best-selling book by Norman Cousins called Anatomy of an Illness; he was diagnosed with Ankylosing Spondylitis, a condition that was meant to be terminal and incurable, it caused him constant pain and he recounts that he felt like he had been run over by a truck. He found that after watching funny movies, the associated belly laughing acted as an anaesthetic and gave him relief from the pain. He decided to make laughter part of his daily routine; healing didn’t happen overnight, but he ended up living twenty years longer than predicted. The beautiful Robin Williams’ movie based on the life of Patch Adams also shows the importance of using humour in a programme of recovery.  If negative emotions damage our health, then surely positive emotions can help us to heal?

Laughter releases healing hormones such as serotonin, dopamine, and oxytocin, it also lowers blood pressure and cortisol levels. Laughing often encourages a more positive mental attitude and undoes the negative effects of stress. Most importantly it creates a positive environment that will optimise healing.

The brains of those with Parkinson’s lose the ability to produce dopamine; leading to loss of movement, anxiety, and depression, and so, many patients take dopaminergic medications. However, laughter causes an increase in the neurotransmitter dopamine, and it can increase dopamine concentrations by up to 50 times. Laughter is clearly one way to help us to manage our symptoms. Parkinson’s is hardly a barrel of laughs and there are days when you can barely raise a smile, but it is important to start making your own dopamine and to ensure that laughter does not disappear from your life completely. As soon as we relax and are out of fight or flight mode, our bodies have the right circumstances to heal.

So, whether you have Parkinson’s or not, it is important to reflect on how much laughter there is in your life. We certainly can’t be laughing all of the time, life is hard, but it is important to give yourself a break and just escape; never postpone sitting down and devoting some time to just having a laugh.

I think that it’s time that we all brought more laughter into our lives. Gelotology is the term given to the science of laughter, and research shows that it can’t be the odd chuckle here and there; sustained laughing out loud is needed to produce dopamine. A hearty belly laugh for about 20 minutes will ensure that you enjoy the health benefits mentioned.  It’s time to lighten up, take a little respite, and start scheduling in laughter breaks throughout the day, don’t leave laughter to chance, make time to laugh every single day. Search for things that make you laugh, be around people who make you laugh, have a playful approach to life, create an environment of joy and happiness, and seek pleasure in the simple things.

Change will not happen overnight, a return to happiness will take time, but trust that the positive steps that you are taking today are accumulating and are working. If you are under chronic stress, your body cannot heal itself, so make laughter into a daily habit, it’s free, and is just as important as any medicine or supplement that you may take. Laugh daily, not just for your health, but quite simply because it feels so good!  

When Did You Stop Dancing?

It’s a long time since I have felt graceful; Parkinson’s has left me feeling clumsy, heavy-footed, and awkward, but dancing has become my daily medicine. For the duration of a dance, I can forget that I have Parkinson’s; all symptoms are suspended. The music puts my brain into a relaxed state, something that those with Parkinson’s rarely experience; rigidity is transformed to fluidity, my body feels lighter and young again, and I am no longer self-conscious or lacking in coordination.

Dancing addresses many of the physical and emotional symptoms of Parkinson’s and indeed many other conditions. Chronic illnesses can chip away at your confidence as you deal with accelerated aging; the body experiences disability, but so too does the whole person. Loss of energy and joy are symptoms of Parkinson’s, but dancing is a natural antidepressant, and it is now essential to my wellbeing. I cried when I first started dancing again; for the first time in years, my body was able to move in ways that I thought it would never do again, energy was moving through every cell and negative emotions were released, I was able to dance with abandonment and like nobody was watching.

‘Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain’.

Vivian Greene

Dancing is open to all regardless of mobility or ability, and everyone can do it at their own level. There has been much research on the physical and psychological benefits of dance; it can be a fun cardio workout, feel good endorphins are released, the body relaxes, and it is a chance to escape and to clear away the mental clutter. Dancing is a shortcut to happiness. I dance to all types of music, but as a teenager of the 90s I always end up fist-pumping to my 90’s playlist; once a raver, always a raver😉!

Dancing can have a powerful impact on the wellbeing of those with Parkinson’s and other chronic illnesses, and it is an important part of my own programme of recovery and rehabilitation. Dance retrains my brain to release dopamine, it helps to slow down muscle wastage, I can unwind as my tense body loosens up, my feet no longer drag, muscle movement and motor control improve, my gait rebalances, and for the duration of that song I don’t have Parkinson’s. Those few precious moments can help to create new neural pathways as feelings of joy immerse every cell, and my body and soul are always left feeling refreshed.

If mobility is an issue, then dance the way that you can; there is no wrong way to dance, you don’t need to be able to pirouette or do the Argentine Tango. You could sit on a chair or on the floor, lie down on your bed, tap your toes, shimmy your shoulders, nod your head, just keep it simple and relax. Dancing is not beyond your reach; this is your dance and your own moving meditation.

Your body is asking you, ‘May I have this dance?’, just listen to it. Feeling lighter is just a few moments away, so give your body some peace, surrender to the flow of the music, and rebuild your confidence one step at a time. Dance can offer you a lifeline, and the more you do it, the more you will give your body, mind, and soul the therapy that they need. So, get your glowsticks at the ready! Once you start, you will wonder why you waited so long…

Spirituality and Healing

A health crisis can cause our lives to come crumbling down around us, and it will inevitably be a catalyst for change. Healing requires an excavation of our lives and getting rid of those things that do not aid our recovery; our new lives are often unrecognisable compared to the old ones that we left behind. However, as our world is ripped out from under our feet, we often find that we become more reflective and that our spiritual connection deepens as we try to seek meaning and purpose in what is happening to us.  

Spirituality can be a sensitive subject to talk about and it is with great delicacy that I will broach the possibility of a link to healing; I realise that some people may be triggered and will immediately switch off, whilst others may find solace in these words. I can only speak about my own experience and fully accept that this may not be the case for everyone. I do not believe that spirituality should replace conventional medicine, but I do believe in taking the best of both worlds and that all options should be used on the path to healing. I am open to trying everything and anything to heal, and I find that having an open mind is a real asset as I try to create the right environment for my recovery.

Spirituality is the part of me that is drawn to hope and miracles, it gives me peace of mind, it encourages me to reflect, it helps me to deal with life’s challenges, it reminds me to choose higher thoughts and to hope for the best prognosis rather than the worst.

I believe that there is more to healing than just dealing with the body, and so I have naturally gravitated towards using a holistic approach; I work with fantastic medical nurses, doctors, and consultants, but also with many amazing holistic practitioners. Good health requires us to address not just our physical bodies, but also our mental, emotional, and spiritual needs; and by doing so we can understand what active role we can play in our recovery.  

I am not suggesting that every illness will be cured, but I also recognise that incredible healings do take place. Our lives often change externally when we change internally, and we can use illness as a period of spiritual development; it can be a real eye-opener as we are forced to slow down and let go of what isn’t working for us. This doesn’t mean that you have to like what has happened to you or that you don’t want to get better, but you are accepting that you are on a path to change. In her book Radical Remission, Kelly Turner shows that spiritual belief complemented the healing journey of many of the cancer survivors that she worked with, they believed that things could turn around and that miracles were possible. The potential to heal was indeed a reality!

Spiritual activities are part of my daily routine, and I do them to varying degrees throughout the day. This can be done through prayer, yoga, meditation, spending time in nature, listening to music, inspirational reading, acts of kindness, and the list could go on; but what matters most is to quiet the mind and go inwards. These activities induce relaxation, slow the body and mind down, and help us to release healthy hormones such as melatonin, dopamine, serotonin; all of which give a welcome boost to our health.

Healing requires patience, and change will not happen overnight. What has healed others may not heal you, but at the very least you may feel better equipped to cope with your illness and the road ahead. Find what works for you, leave room for mystery, hold on to the belief that magical things can and do happen; you have nothing to lose, and it may even help more than you could ever have imagined…

A Helping Hand

Our greatest lessons often reveal themselves in times of despair, and the past few months have certainly been challenging in terms of my journey with Parkinson’s. My health steadily declined; I became less and less mobile, energy levels plummeted, my anxiety was out of control, and I was basically losing the ability to manage my own body and do even the simplest of tasks.  All of this left me feeling isolated, devastated and extremely vulnerable. I therefore segregated myself from others so that I could hide my imperfect body and the symptoms that were becoming more and more difficult to hide.  I had lost myself.

However, everything that happens to us has the potential to help us to grow, and this was not a wasted experience. I realised how deeply grateful I was for the support of those who love and care for me, they caught me when I fell. This very difficult time in my life reminded me how incredibly lucky I was to have these kind and loving people in my life.

I also learned that I needed to ask for help, I never want to be a burden to others and so I find it hard to accept help or to even ask for it. However, we all need help at times, to varying degrees depending on our circumstances, and needing help does not make you weak. I consider myself to be very resilient and have always been able to bounce back from life’s challenges but sometimes you just can’t deal with things on your own, and this was one such time. Life got better when I expressed how bad things were and got help. Others don’t know what you need unless you ask, and they can’t be expected to read your mind, so just ask for help.

I am surrounded by kind and caring people who are concerned about my wellbeing, they gladly gave up their time to help me and never made it feel like a chore or like they resented me. They wanted nothing from me, and despite their own commitments they just wanted to help.

People are often afraid to ask someone if they need help as it may not always be wanted. I would advise that you simply ask what support is needed, those with chronic illnesses are often trying to hold on to what independence they do have, and it is important not to disempower them.  The offer of practical support can be invaluable; things like taking the dog for a walk, going to the shop, or dropping over a cooked meal can be a great help. Just listening to someone and creating space to allow them to articulate what they are going through is equally important, this can provide a sanctuary where they don’t have to be pretend to be fine. Ask questions to understand, offer your time and presence, be patient, don’t judge, and just make the person feel recognised and encouraged.

Maya Angelou – ‘People will forget what you said, people will forget what you did, but they will never forget how you made them feel’.

Having been on the receiving end of such kindness, it is important for me to ‘pay it forward’. I will endeavour to help others more and to leave my little corner of the world better than it was. Service is a good way to take our minds off our own problems and gain some perspective, it lifts our mood, and it makes life more meaningful.  Some days this kind gesture might just be a text, phone call or a compliment, but it might have a huge impact on the recipient, and it may help them more than you can imagine.

The darkest time of the night is immediately before the dawn, and thankfully my health is starting to improve again. I will keep going, but I cannot do it alone. I am blessed with a great partner, family, and friends, and I truly treasure them. I never lose sight of how lucky I am. Hard times will come to me again, but so will my support team…   

Just a Limp

It took a while for me to accept that I had a recognised disability; I was defiant and determined to keep on going and to not let Parkinson’s define or hinder me. However, the reality is that I cannot do a lot of the things that I used to do, and every day brings challenges that I previously never had to contend with, just making it through each day is a lot of work. Parkinson’s has taken a lot of things from me that I used to take for granted.

Having a chronic illness is also very expensive; people with disabilities are twice as likely to live in poverty, and this is often a consequence of their disability. Parkinson’s costs me a lot of money; I had to employ a cleaner as I don’t have enough energy to do housework, I pay for healthy plant-based meals to be delivered during the working week as I am too tired to cook after a day at work, I gave up a management position in my job to try to reduce my workload, I spend a lot of money on holistic therapies that are not available on the NHS, and just last week I spent £300 on personalised insoles that will help me to walk more easily. As a teacher, I am on a good wage, but it has its limits, and so, I decided to apply for the PIP benefit. I have contributed a lot of tax over the years and hoped that now that I needed support, that I would get something back; but I was wrong! I have applied twice and been turned down both times. I am disabled but apparently not disabled enough; it was ’just a limp’. I felt like a fraud who did not have the right to claim for a disability. Whilst I am incredibly grateful for the things that I can still do, these words undermined what I go through each day.

I want to stress that this is not a blog about who deserves PIP, nor am I looking pity or praise, but it is an invitation to reflect on how we look at disability; it can be both apparent and non-apparent.

People might just see a limp but there is so much more going on beneath the surface, and I know that I speak for others with chronic illnesses. I am not discussing these symptoms in order to complain about my lot, I merely want to raise awareness of the ‘invisible’ side of disability. It takes so much for me to get out of the house each morning; due to fatigue and exhaustion I must take breaks as I get ready. I used to be extremely punctual, now I operate on ‘Parkinson’s time’, and I am often late. I need to budget energy and decide where to use it. I have balance issues, I am extremely sensitive to over-stimulation and crowds, I can’t make plans with certainty, I have brain-fog, I also have limited movement, extreme anxiety, low mood and insomnia. The list could go on… Those of us with chronic illnesses are often dealing with old age issues whilst we are still relatively young, I know that I often feel like I have the body of a much older lady.

Each person with a chronic illness will have their own complex needs but will often receive a sceptical response when explaining invisible symptoms. We are often made to feel like a hassle and a burden and that we are taking up space. I however, have stopped living apologetically and I now ask for what I need. I have gone from being someone who tried to hide her disability to someone who feels compelled to raise awareness and to be an advocate for the chronic illness community.

Remember that anyone can become disabled at any time, and we never know when we will be diagnosed with a serious illness. I will continue to confront the status quo and I would implore you to do the same…