I was thinking, today, about the extra financial costs that come from being a person with a disability.  I had received a small catalogue of helpful mobility items and useful gadgets that help with tasks that were once so simple.  For example, battery powered jar openers, tin openers and bottle openers as well as gadgets that help with fastening and unfastening buttons and zips, in clothing.  There are so many very helpful items, a few of which I have been using for the past couple of years, already.

It occurred to me that I was building up a list of around twenty five more of these helpful aids and that I was getting excited about buying them, in a way that I used to get excited about buying new clothes or items for leisure and entertainment!  How did I become someone who would get excited about treating myself to a new walking stick?!  This is a surreal realisation but I regard it with humour and I respond to it with a knowing smile.  Not only did this realisation surprise me, but so did the almost £250 fee for these items, should I decide to buy them.  Thank goodness that, in the United Kingdom, we have Personal Independence Payments to support the cost of being disabled.

Brilliantly designed; everything from a special key holder that doubles as an aid to turning the key in the lock of my front door, a small key that opens cartons of fruit juice on days when I cannot twist the cap, a slider that goes on the outside of a tube of toothpaste and which squeezes the paste up the tube for me, a tea bag squeezer for the moments when I cannot do that myself, a holder for playing cards because holding cards can cause cramping and there can be grip problems, special grips that you can place around pens and pencils for days when my hands cannot maintain the precise guide needed for writing or drawing and even a clampable handle to go on the edge of the bath, to help me on days when I struggle getting out of the bath.  

I will purchase all of these over time for, unfortunately, I do have the need of them.  Not all of them every day, but some of them every day.  What I need varies from day to day or even hour to hour; depending on how my symptoms manifest.  Parkinson’s is one of these diseases where you do not truly know what difficulty you will face beyond as little as the next three hours.  Having helpful gadgets, aids and devices is, to me, good sense.

There are, of course, many stalwarts who like to ‘soldier on’ without buying any helpful tool to make their life easier.  Purchasing such a thing would, in their eyes, be an admission of defeat; an acceptance that they are disabled.  I love a good fighting spirit in anyone but, personally, I always like to choose my fights wisely.  Why make life harder for ones-self when that is unnecessary?  After all, ill health delivers the real fight; the battle for survival. 

No, for me, I would much rather conserve my energy where I can and, instead, use every bit of my energy to fight the bigger battle for maintaining my quality of life.  Why spend fifteen minutes struggling to open a jar or to get out of a bath when a helpful device enables you to achieve your objective nearly as quickly and efficiently, as you once could achieve yourself?

To any reader who may be disabled now, or in the future, I would recommend that you provide yourself with any helpful tools, aids, devices and gadgets that you can.  These will enable you to relatively swiftly carry on with your task, rather than for you to face burning up your valuable reserve of energy, and emotional resilience, as you fight to unscrew a lid!  Stubbornly refusing to accept your new reality is not, in my view, valiant.  It is not sensible use of your time or energy.  In fact, such resistance is not only futile, but it is almost always guaranteed to lead to some form of frustration.

While your ego battles with the label and the harsh reality of disability, your resistance is more likely to push you into denial and depression.  Think about how your disability affects your self-esteem and self-confidence.  You may need to talk about this with someone?

What are your views?  Are you, like me, someone who accepts the limitations that disability causes and, while I always push myself hard initially,  someone who proactively seeks a solution from disability gadgets?  Or, are you someone who ‘soldiers on’ in a struggle that causes you to feel wiped out and frustrated after fighting through every task but who sees using devices and aids as an admission of defeat?

I would find it hard to ever leave myself in a position where I may be in a low mood or frustrated state when there are solutions.  In fact, I simply do not.  I would find it unacceptable to act in a way that leaves me feeling any low mood, frustration or even depression due to not focusing on solutions.  That would also be unfair for those around me.  Accepting disability and ill health is not easy, but creating unnecessary difficulty when there are in fact solutions, and ending up depressed and frustrated, must surely be much harder to bear?  Something that is unnecessary.           

Perhaps the nature of Parkinson’s Disease is that, being largely a hidden illness, using devices and helpful aids becomes the visible evidence that we are disabled and for some, therefore, too uncomfortable to display?  Acceptance may be a step too far for some.  Perhaps the fact that I am so open about being a person with Parkinson’s has removed much of that potential discomfort and has enabled me to, instead, focus on solutions? 

If you meet me, you will simply meet a person who uses a walking stick.  Behind the scenes, I have all manner of helpful gadgets and gizmos!  These help me to be enabled, rather than disabled; for which I am grateful.  Gratitude beats depression, any day.

(C) Dean Parsons. 2018.




3 Responses

  1. Dean, I find your article very interesting, informative and very credible.  Although we have never met,  I had the feeling your article was focused on my younger days and the mistakes I had made.  I’m addressing your article because as a scientist, I believe when researching any topic, it is best to talk to the source or in this case one who has lived on both sides of your argument. 

    You see, I was a military helicopter pilot, had the world by the tail, and then was involved in an accident that left me with numerous fractures, multiple artificial joints, environmentally induced type two diabetes, atrial fibrillation with a single lead pacemaker because of external heart trauma to SA node and a TBI.  After many years in rehab, the US Army decided they had no longer any use for me since I couldn’t maintain flight status. 

    Well, to say the least, that was a blow to my ego, I was at least medically retired.  That made me more determined (angry) to show I was not disabled and was like everyone else, so back to college and became an engineer.  Prior to about 20 years ago, I would have vehemently disagreed with you as I was one of those “stalwarts” who would soldier along without any thought of using those specialized tools that would have made my life easier because using them would be an admission of defeat and an acceptance that I was disabled. 

    My attitude and personality would not admit any type of failure on my part, because, in my mind, I was not disabled.  Time goes by and I and my wife (also an engineer) were working for the US Navy traveling all over the world designing combat systems for the aircraft carriers.  As time went by, I found it harder and harder to do some of my work without adapting or tweaking how I did my job.  I eventually surrendered to that old colloquialism that says “time heals all wounds”.  Well, yes it does, and I started using some of the aids available and it is was a blessing.  I also decided to seek the advice of a counselor, something I have no regrets about.  That being said, I will never allow MY disabilities affect my self-esteem and self-confidence, though I can still hide most of my disability with the exception I must use a cane.

    As a newbie on the journey down the Parkinson Road, I am now faced with the minor aggravation and frustrations of leaking like an old Harley Motorcycle, right side tremors, balance, freezing, and pain, but I have a different attitude when it comes to this disease.  Although at this time, I have no need for helpful tools, aids, devices, and gadgets you use, when I do, I will obtain them.  You are absolutely correct when you recommend conserving one’s energy where we can and, instead, use every bit of our energy to fight the bigger battle for maintaining a good quality of life. I wished I had learned that years ago, but I have lived a good life and have no regrets. 

    Because of my strong attitude, I like you, would find it difficult to put myself in a situation where I am in an unhappy emotional mood or depressive/frustrated state when there are remedies just for the asking.  About a year ago, I was diagnosed with Parkinson’s and found myself in a frustrated state because very few knew anything about Parkinson’s symptoms.  I was subject to disparaging comments and I realized the only solution was to educate them about Parkinson’s as well as other disabilities.

    I was very fortunate as my area is rich with retired military veterans and I made good use of them.  We formed a veteran’s advisory group to address bullying, community self-awareness, and conduct.  Our group consisted of retired officers and enlisted.  We attended many community meetings, school assemblies and our message got through. 

    In closing, a profound thank you for writing this article because it needed to be said.  One day,  I hope to meet you and you to will simply meet another person that uses a walking stick.  I visit Europe about 4 times a year as my Son, Grandson and Daughter in law stay in Poland most of the time, my Great Aunty lives in Oslo I have a dear friend in Blokken. Pardon my grammar as it’s 2:30 in the morning and not sure if my brain is fully engaged.

    • Hi Phil, Thank you for your most considered reply. I appreciate the time you have taken to reflect on my article, to find meaning from it and to respond. As a writer, there is nothing more satisfying than hearing back from readers, whatever their views. Your experience of becoming disabled is shocking and I cannot begin to imagine how tough that all was for you and those close to you. You clearly have a strong fighting spirit, resilience and strength to endure. Like you, I too have ‘soldiered on’ in the past and that taught me that there comes a point at which, unless we employ help in some form, we can begin to suffer, needlessly. I decided that suffering unnecessarily made no sense. You pick up well on my point about conserving energy for where it really matters. The bigger battle is where that energy counts, I believe. My approach may be controversial to many and I welcome and respect all views on this subject. I am delighted that my message resonated with you and that you could see the value in what I communicated. Thanks for reading and if ever you are in the UK, do drop me a line. If you think anyone you know would be interested in my blog, please do feel free to share it with them. Kind regards, Dean.

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