You Can Do Parkinson’s

One of the difficulties that people with Parkinson’s tell me about is their sense of frustration at the realisation their diagnosis has changed them forever.  I know this feeling, myself.  I too am well aware of the limitations this disease has upon my life and of how I will never regain my former good health and ability.  That is tough to accept, yet accept we must.

Quote:

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow…” – Lao Tzu.

Letting Go of What Was:

What I believe I am witnessing, within those who sadly sink into depression, is a deep sense of grief and loss.  This is caused by an unwillingness to accept change.  Typically, depression is often exacerbated by introspective thinking.  The cycle of thinking about ‘our lot in life’ serves as both a cause and an effect of depression.  In fact, one could sometimes question which comes first, the depression or the thought?  Nonetheless, the two become enmeshed in a vicious cycle with seemingly no way out.  That is, the belief can be that there is no way out. No hope.  A belief that the person one used to be is lost forever.  Destroyed.  Well, that is merely a belief and it is a belief that I do not hold with!

The Continuum:

You see, although I must now live differently to how I lived before, I still consider myself to be me.  There is a continuum.  The onset, development and diagnosis of my symptoms were not the end of who I was.  They simply represent a new experience that the person I am has to face.  As with all experiences, I will be affected and even changed by what I go through; but that is what each significant experience in life has always done to each of us.  We develop.  We adapt.  We change.  We grow.  Even in the darkest of times, and I do have days when I feel down, we can learn how to do well, to be the best we can be and to enjoy something within each new day.

Certainly if I dwell on no longer being able to hike, ride a horse, go kayaking, decorate my house or even just move without pain and difficulty, I am going to feel sorrowful.  That is why I choose not to dwell on those things.  Dwelling on them will not change them.  It is what it is.  That is called acceptance.  I have to look at each new day and think ‘What can I do?’, rather than ‘What I can no longer do.’

Becoming Solutions Focused:

Let’s take a significant example.  My career as a Counsellor, Psychotherapist and Clinical Supervisor.  I have had an amazing career.  I received, and still receive,  much recognition for my work.

Parkinson’s will soon take away my ability to work in my current roles.  What will I do?  I will adapt.  I know that because I have already made many adaptations to my working life; necessity drove that.

I ask myself ‘What can I do?’  How can I continue to thrive and do what I love?  I considered that question.  Here is what I came up with:

  • My body may shake in a way I can no longer hide, at some point in the near future, and my speech difficulties may get so bad that I cannot counsel clients effectively.   So, I have to accept that counselling people will come to an end.  This may be just months away or it may be a year or two, but it has started.  What I can do, however, is offer people my skills through writing books, making podcasts online, making audio books and holding webinars online.  I get to continue helping people, but I can do it in a new way.  I can still make use of my knowledge.
  • As I already have a hobby, in writing, and a position with ‘Parkinson’s Road’ writing articles, then maybe I can build a career in writing?  I am thinking ahead…not by looking at more loss, illness and negatives (dwelling on what I cannot/will not be able to do) but by proactively building new foundations for a new direction and phase in life.  I chose to study for a Diploma in Creative Writing to earn myself some credentials, and develop my skills, in this field.  I am now half way through my fourteen month long home study course and loving it.

The Pay Off:

Where I could have focused my thoughts on how Parkinson’s has been continuously chipping away at my career that I worked so hard to build, and which I love deeply, I have instead focused on how to use what I know, enjoy and what I can learn to:

  • Enable me in my future.
  • Retain fulfilment by doing a different type of work but in the field that I love.
  • Have at least a potential to keep earning money.
  • Use my knowledge and skills.
  • Become skilled at something else I enjoy.
  • Develop my hobby into a craft.
  • Give me and my family a sense that I may still grow and thrive.
  • Provide myself with a new sense of hopefulness and positive mood.

The key is to adapt your mindset, first.  You have a new reality and so you must let go of expectations, of yourself, that were based upon what you used to be capable of.  You have to base your expectations reasonably upon what you are capable of today.  Also, don’t discount all the knowledge in your head, your skills and your hobbies.  These may be the key to living life in a new way, going forward and building on them.

Solutions as Outcomes:

For example, until last year it was reasonable to expect me to mow the lawn once per week in summer, before my disability worsened.  I cannot do this now.  It is reasonable that I still see getting the lawn mown as my responsibility.  Rather than nearly kill myself trying to mow the lawn and rather than become depressed that I can no longer mow the lawn, I focus on the fact that a solution is needed.  I arranged for a Gardener to take over mowing the lawn.  I get to feel good because the garden looks well tended and because I lived up to my responsibility.  Instead of getting stuck in a negative mind set, I can feel a sense of achievement and, even better, while our Gardener mows the lawn, I have extra time to write and study. A ‘win win’, as they say.

I have also employed a Window Cleaner once per month and a Cleaner for inside our house once per week.  These are solutions that still enable me to feel that I am taking responsibility for getting things done.  That gives me back my sense of achievement and self-worth.  I have recovered an important feeling, that I would otherwise risk losing.

This solution-focused approach is the key to recovering yourself from the depression that could otherwise engulf you.  ‘What can I do?’ rather than ‘What I cannot do’.

I’d Like to Report a Theft:

I witness people saying “Parkinson’s has stolen my future from me.”  I ask “Where was this alternative future you expected, written and pre-determined?  Is it not simply the fact that we just live our lives in the present and that we are simply living our stories?”

Ego vs Reality:

Do I believe that another future had been designed for me? No.  This is simply my life playing out.  I am currently forty-six years of age.  It was only ever my own ego that might believe a different type of future, one free of Parkinson’s, was awaiting me.  This is simply who I am at forty-six.  There is no other version of me waiting in the wings.  This is just who I am today.  It is just my story playing out.  It is only the ego speaking when people say “My future has been taken from me.”  No, you actually still have a future and you now just have to decide:

  • Will I focus on ‘What I can do?’
  • Will I focus on ‘What I cannot do?’

Answer carefully, for one answer leads to contentment and the other to sorrow.

 

(C) Dean Parsons.  March 2018.

Advertisements

  4 comments for “You Can Do Parkinson’s

  1. Jackie Unitt
    February 4, 2019 at 4:24 am

    Dean, I am considerably older than you, and diagnosed about 3 or 4 years. Inherited from my mother, who was not a good example to follow. My big regret is for my husband, who is 10 years younger. Now both retired we had so many plans. Now we can’t plan too far ahead, life is so spasmodic. Insomnia also a problem. I have to come downstairs so I don’t keep Paul awake!

    Like

    • Dean Parsons
      February 4, 2019 at 9:41 am

      Hi Jackie, Thanks for reading and commenting. It’s a very difficult disease to live with, isn’t it. Parkinson’s is in my family, too. My great-aunt had Parkinson’s. She was my mother’s, father’s twin sister.

      It is hard on any couple, for sure. There are so very many impacts and so much adaptation is required both to daily living but also to plans, aspirations and dreams. I also find that you might make a plan but that, until you awaken on any given day, you cannot know what you can do until you know which symptoms you will face at the time.

      Insomnia is my nemesis. I understand how that affects so much and so I too get up and will often write, at night and into the small hours.

      I started developing my symptoms, and my search for a diagnosis, in my early twenties. It was a long and frustrating journey to the diagnosis, just recently in 2017, at age 45.

      You will, I am certain, have learnt to be a resourceful and resilient person. You’ll know yourself in ways you may never have imagined possible and, despite the hardship for you and your husband, the opportunity to become so very close and to view and value life in unexpected ways can add deep meaning to your relationship. I hope that is the case, for you both.

      Big plans may no longer be possible, but the wealth of what we can enjoy, through appreciating the simple things in life, can still be hugely fulfilling.

      I’ve faced this view of things throughout my younger years and so much has been closed to me in life as a result of my illness and the limitations it imposes on me. Yet, I consider myself one of the happiest people.

      Keep going. Keep interested in new things. Savour the simple pleasures. Connect with people and with nature. Take up new hobbies. Evolve.

      I wish you well. Dean.

      Like

  2. Pat cullinan
    February 4, 2019 at 1:10 pm

    Thank you for this post Dean , it is good to read . I’m 58 now I was diagnosed at 55 . At this moment I sleep most nights right through but I do have the occasional evening where sleep just dosnt come and for me that will be the most difficult symptom . I hate it really. As you say our limitations can be turned around into other positive achievements but I really am scared of how I will react if insomnia hits me like it does others. My dad and his sister had Parkinson’s I saw what they went through my dad had my mum at his side I live alone . Thanks again

    Pat Cullinan

    Like

    • Dean Parsons
      February 4, 2019 at 1:43 pm

      Hi Pat,

      Thanks for reading and for your comment.

      I completely understand your anxiety about insomnia. It’s a very tough symptom. I have managed by moving my life around so that my mornings are largely clear. This gives me recovery time when insomnia strikes.

      There is good medication available from your Neurologist that can help aid sleep, resolve any REM sleep disorders and also resolve restlessness. Just inform your Neurologist or Parkinson’s Nurse, if the symptoms arise.

      Stay connected to others with Parkinson’s. It helps to know there are others who understand.

      You can do this. Best wishes. Dean.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: