Living With Parkinson's

Off the Rails?

“People who don’t see you every day have a hard time understanding how on some days–good days–you can run three miles, but can barely walk across the parking lot on other days,’ [my mom] said quietly.”  Jennifer Starzec.

     This weekend has involved thinking about the bad days.  Parkinson’s has a habit of giving you days when you question your disabled status; because you feel stronger and more able, only to then knock at your door and hit you with a big fat reminder that you are vulnerable and that you have to fight to get through your day.

     It is vital that your home caters for all of your types of days.  Some days are better and you do feel more able.  Nonetheless, there is never a day that goes by without some of the forty, or so, symptoms affecting things.  When mobility difficulties increase, life becomes rather difficult.  Yes, that is an understatement.  This may be because the usual sense of balance changes, causing untold challenge just to get about at home.  It may be that mobility itself is just difficult.  From getting out of bed and up and down stairs, through to walking, using your hands and arms and just generally moving.  Parkinson’s is like a ‘pick n mix’ department in a sweet shop; you never quite know what you are going to get.

     Why have I been focused on the difficult days, this weekend?  Well, I have had several recent incidents in  which I have almost fallen again.  This was happening so much that I sought a referral to an Occupational Therapist.  A few months after seeking my referral, I was contacted by a thoroughly delightful woman by the name of Jennifer; an Occupational Therapist in Suffolk.  Jennifer came to our cottage and assessed me.

     The assessment was thorough and detailed.  I felt for Jennifer, for she had to attend during the early part of the Covid-19 lockdown.  We all adhered to social distancing measures and Jennifer made her way around our home, assessing how I move about the place.  As it turned out, she determined that both internal and external support railings were needed for my bad days.

     The work to install the railings that will help me from our driveway to our front door will begin tomorrow.  For that reason, I have had to prepare for this, over the course of the weekend. I have spent time trimming back some of the plant life that lines the pathway.  It was not easy for me.  What would once have taken me an hour took more like three hours and I almost fell over several times.


     The plants that had grown too close to, and even over, the path have now been cut back and so the workmen will be able to gain easy access to the space, tomorrow.  I will write another post that shows the railings being installed and the end result, for I hope that other people will be inspired to consider their mobility support needs for outside their homes.  It seems to me that people so often focus on support aids, indoors, and forget that outside can be a hazard and a difficulty, too.

     I also have found that many people are defiant about never having something that makes them appear disabled.  Ego gets in the way of common sense, in my opinion.  Far better to make life easier and manageable, and prevent the many injuries that happen each year, than to let ego get in the way and hold on to a false sense of self, based upon who we used to be.  Disability is nothing to be ashamed of.  Perhaps we ought to be ashamed of stupidity (bit harsh?); falling and sustaining unnecessary injury, for example, simply so that we can pretend we are not disabled.  Catering for the bad days does not mean anyone is giving in and no longer fighting their illness.

     Have you got an illness, disease or disability that causes you mobility difficulty?  How do you cater for the difficulties you experience?  Are you someone who refuses to do anything that might suggest a hint that you have a disability?  Do you feel that people who install mobility aids are giving in, somehow?  Are you someone who has been thankful and benefited from the installation of mobility aids?  Do feel free to comment below and share your experience.  Doing so will be of interest to others who also face such difficulties.

(C) Dean G. Parsons. 2020.

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