Everybody’s journey with Parkinson’s is different, although without exception we all experience the same thoughts and emotions at some point.
By reaching out to gather information and by seeking support we are collecting the tools we need to embrace the challenge before us. By building this community @Parkinsons.me we want to help those affected by the ripples of uncertainty created when someone is diagnosed with PD. I am sharing my journey with the hope of reassuring just someone that they are not alone with their thoughts. I’m a talker, and I think the talking has helped me process the changes that PD has brought to our family’s lives. I’m also an incredibly lucky person who has always been able to reach out to those close and take them into my confidence. Even at the first sign of Ewan’s symptoms I had enlisted my family and close friends as my army. I needed them at that time as much as Ewan needed me. At first he couldn’t understand my openness but latterly he gets it. However you deal with your challenges is the right way for you. Mine is just one way. I would however advise you to find someone you can trust, someone who will listen and allow you to voice your fears and frustrations. If nothing else they can look back with you and see how far you’ve come. I gathered so much information in the early days that I had a diagnosis before the consultant did! It was the wrong one as it happens but when I was researching I was busy and doing something constructive. Ewan on the contrary never typed his symptoms into “Google”. He dealt with things by trying to ignore them, almost as though they might disappear. It was actually quite nice to pretend with him sometimes that everything was normal. His symptoms became much more noticeable around the time of his diagnosis. For two years he’d carried on as “normal” to the outside world. It sounds silly but it was almost a relief when we knew what we were facing. He was no different walking out of the hospital than he had been when we walked in that day but something felt very final. I guess it was the end of the wondering. We were lucky to have a consultant who delivered the details of the condition without drama. She offered huge support and gave us lots of information. Strangely though those brochures on Parkinson’s sat in the car for months and finally went into recycling! Ewan was still unable to discuss or acknowledge what he had been told with anyone but me. I think in early days I bullied him a little into telling people in certain circumstances. I find people are less curious if they know what’s going on. I hate it when people stare or come up and ask me what’s wrong with him… And they have! I do however understand how hard it is to disclose such personal information when you are still processing it yourself and have always supported his choices. And so our journey began…a mountain to climb with no map! I’m hoping to regularly contribute and welcome you to get in touch with me through the website contact page if you have anything you would like to share or discuss.
A significant non-motor symptom for me is something that I think can be classified as a form of “obsessive behavior.” Although these involve wholesome behaviors, the obsessive nature of the “activity-of-the-week” is so strong and compelling that it quickly becomes my singular focus for that time period, to the exclusion of some important responsibilities and relationships, especially our marriage relationship. For example, this week it might be a videography project; next week, it might be singing. Whatever it is, it does not include my wife. It’s only because she cares deeply and she has a very strong personality that she is able finally to drag me out of one of these states of mind and restore some sense of balance in my life and in our relationship. It’s not a very pretty process. It requires a significant amount of commitment and discipline on my part, as well, to snap out of these temporary “addictions.” I use that word because the attraction is so strong. I don’t know whether this is caused by PD or the meds or both. Have you had a similar experience and if so, I would be interested in how you have dealt with it.