The Parkinson sufferer and their family and friends can all feel guilty about the presence of the disease. I believe this arises out of feelings of helplessness. The sufferer may feel guilty about unintentionally burdening their family and friends with the difficulty of the disease. Family and friends may feel guilty about being unable to help their loved one. I am sure all involved wish that the disease hadn’t touched their lives. But, given the chronic nature of Parkinson’s, this wish, although very understandable, misses the reality of the situation.
What can be done to counter the feelings of helplessness? Heidegger’s idea of thrownness can be useful here. Thrownness describes the state in which you exist. Examples of thrownness include whether you are male or female, have dark or light skin or are susceptible to Parkinson’s. These things were laid down before you were born as part of the process that threw you into the world. No one could have changed these characteristics. Thrownness is blameless. No one should carry the guilt of blame. The state in which you exist just is.
It may seem strange but the major part of what you are was created without any conscious control (yours or anybody else’s). This seems to increase the helplessness! However, there is a crucial aspect of our thrownness the feelings of helplessness ignores. We can react in the right way to the situation; this is where real control resides. Thrownness, because it includes this ability, is not a rigid life sentence. There is space for individuality within your thrownness. You can’t control what you are but you can control who you are.
With this in mind, maybe the sufferer and their family and friends can empower themselves by learning about Parkinson’s, approaching the challenges with openness, honesty and mutual support, showing each other that the disease is manageable and can be adapted to, that life continues after a diagnosis. Therefore, all involved can feel empowered when walking on Parkinson’s terrain, ready to react to what is encountered along the way!
I don't feel guilty, nothing to feel guilty about.
Just drawn a short straw at an early age, (OH),and now, 15 years later at just 61, our hopes and dreams have been shattered by this condition as it progressses on its inevitable course.
I am now waiting for the cure all post,seen it before,the preamble,then in for the hit. Hope I'm proved wrong but my instinct has proved correct in the past.
Definition of 'guilty' from the Oxford dictionary
'culpable of or responsible for a specified wrongdoing'
any one here fit this criteria with regard to their PD. Can't imagine anyone going out of their way to get this !!?
Hi dr jonny,
Whilst I believe your posts are intended to offer a very positive view of "acceptance" being the answer to living with Pd, I feel that there may have been an element of "this is how I did it, so you should too." I find that, as a carer, being told that my husband and I should be "approaching the challenges with openness, honesty and mutual support, showing each other that the disease is manageable and can be adapted to, that life continues after a diagnosis." is a little galling.
Yes, this is the ideal to aim for, but in reality it bears no relation to our situation and the way we have to live our lives because of Pd. We are suffering as a couple with the effects of DA's and my partner's confusion because of his memory loss. There is no "openness" or "honesty" on his part because of the effects of his medication, which makes him secretive and deceitful. The "mutual support" only goes one way. Having said that, he never complains about the numerous physical sypmtoms he has and is mostly happy in himself (on his good days he goes around singing.) We are just doing our best as each difficult situation arises.
So,I applaud your positive outlook and wanting to share that with others, but please understand that not everyone with Pd is capable of what you feel you have achieved, and never will be. Each person will take their own route with the Pd that THEY have.
I genuinely hope your positivity continues through the years and that you go on to feel in charge of your condition.
Kind regards to you and your family,
I certainly do not feel guilty by having pd. I think frustrated is the term I would use. Frustrated that this incurable disease is stopping me doing things that I love doing and for the extra strain it puts on my other half. Always remember though that if you look around, you will see someone worse off than you. Without wishing to appear morbid, I am thankful that at 76 years of age, I know that I have few years of life left to suffer the effects of pd - unlike those who are diagnosed at an early age. Feel guilty - NO - just be thankful that things could always be worse'
Thanks for the replies.
There is a difference between being guilty and feeling guilty.
I was thinking more of the situation where I was the unaffected person and a loved one of mine had Parkinson's. I would desperately want to free them from the PD chains and feel so helpless because I couldn't. I would feel, rightly or wrong, guilty that I couldn't. Sometimes as a sufferer I feel helpless dealing with my disease. i was attempting to understand the helplessness and describe a positive (yes that word again!) way through it in my post.
Here is another word for you to consider -
'Empathy is the ability to identify with [u]someone else's[/u] feelings or beliefs'.
Try empathising with us instead of issuing judgements on us all. We would like to get to know the real you and not the 'party line' on guilt and acceptance.
You have misunderstood what I wrote but you are free to choose (even when you have Parkinson's) any interpretation you want.
(Hint - the key to understanding me is included in this post)
I wish you and your family a Happy Christmas
I thought I felt guilt when told I had been accepted for the Duodopa OP but its
not guilt, its regret that more of us cant benefit from this device , at over
£30 000 a pop it would bankrupt the NHS, we are all travelling the same road,
some of us will reach the end of that road sooner or later depending on your age
but I cannot allow guilt to add to my burden. Through this forum we can see the suffering of our kin, we are very special we have been(WHETHER WE LIKE IT OR NOT)
Invaded by a monstrosity ,so if you like we are all part of the giant experiment
and its because of the effort and struggles,of turnip Blue Angel worrals Valerie
ecinda dr jonny and countless others, millions of fellow PD victims that at some time in the future, some very special day , some very special person wil
find a cure. Soon please Fed
Hi Fed, I actually have the inherited form of Pd, and although the progression is a lot slower it begins at a much earlier age. I reckon I had vague symptoms in my mid to late teens..but I don't feel guilty about it, I still did all the usual teenage things and I got married (twice!) I had 2 children, both of which have been offered a test to determine wether or not they are likely to develop PD, both have declined. I inherited it from my lovely fraternal Grandmother.a Dales woman who came from truly beautiful, tiny village in the Yorkshire Dales , called Dent. It has missed an entire generation, and, so far, I am the only one to have developed it in my generation. But I would never call myself , the unlucky one, nor would I blame my Grandmother. I believe, "What shall be shall be." Love BA x