Parkinson’s fear and shame…

I have started listening to a Podcast today titled “Fear and Shame in Parkinson’s”. They had a panel of people with Parkinson’s talking about the topic and what it means to them.

I have to say, it is very easy to see the fear part of the Podcast topic. Let’s face it, if you focus enough on it there is plenty to be fearful of. However, I try my best not to focus on the fearful future that might befall me, because who knows, it might not come to pass. There may be – it could be possible – that there is a cure or a treatment that comes along that may stop me from having the dire outcome that may await me at present. I may just pass peacefully in my sleep without any of the things that might cause me to be fearful actually happening. For the most part, I try not to think too far ahead as fear of the future could easily rob me of a happy present. I am not prepared to let that happen.

The shame part of the discussion didn’t resonate with me. I get that at some point people may feel some embarrassment if they have very visible signs of Parkinson’s. My Dad used to thrash about wildly when his meds weren’t working property and I’m sure he found that difficult when he was in the company of strangers who might look at him strangely and wonder what was going on. One person spoke about the shame of not being as good a mother as she could have been. I find that very sad. Rather than feeling shame, I would like to say to her “celebrate what a great mother you are despite your Parkinson’s. You probably have to try so much harder to do what other Mums take for granted.”

Others spoke about other sources of shame for them. I know each of us has our own personal journeys and viewpoints, but I honestly can’t say I would ever think that I would feel shame. Some spoke about impulsive behaviours caused by medications and the shame they felt because of them. Again, hyper sexuality, gambling, pornography addictions or what ever impulsive or compulsive behaviours may be caused are not something they would choose to do, so to feel shame seems unfair. It is important to seek help for any of these things if they are at the point where they become problematic, rather than sitting in shame to the extent that you are too embarrassed to seek help to remedy the situation.

My husband was with me when the Neurologist advised me that my Sinemet might cause impulsive or compulsive behaviours. I got a bit ‘spendy’ last year in the leadup to Christmas and he commented that it might be an impulse control issue. I pointed out to him that I was always a bit of an impulsive shopper, especially around Christmas so really there was no real difference. The fact that the specialist forewarned us about the possibility made him more conscious of a behaviour that was already very much pre-existing.

I hope that the people in that panel can find a place of peace where they can learn to live in the here and now and not in fear of the future.

I also hope that they can find a way to move from shame to an acknowledgement that the things that they struggle with are not necessarily their fault. That rather than feeling shame at things they have little control over, they seek help where it is available.

I hope also that they can learn to celebrate the positive things in life and live and love in the moment without internalizing future fears.