In 2013 I went home and looked after my elderly father until he died whilst it was harrowing I learnt a huge amount about being a carer. I watched as slowly his body stopped him from doing everyday things. Towards the end of his life he was in effect dependent on other people to do everything for him. I am starting to find lots of similarities with regard to loss of movement. Struggling to put my clothes on struggling to get out of the chair difficulty turning in bed and a whole host of everyday dexterity just fading away.
I am analysing my emotions about this trying to reconcile with myself so that I don't slide into the trap of moaning complaining and feeling sorry.
I am fast coming to the conclusion that I need to separate completely the idea that independence is governed by the amount of dependency you have on people and things. It seems a rather crazy notion but I think there is some merit in my thinking. So I may not be able to pull up my trousers on my own or easily but the choice to wear trousers and the colour and style of them is mine. Not be able to pull them up is simply an action I can no longer perform but is that really a slur on my independence. If independence is expressed as the control of the chain of decisions you make and their relative importance or significance in any given action then it becomes easier to see that actually a lot of Independence is retained.
I have been guilty of likening my physical situation as that of returning to a childlike state. This really is not the case as the key and important decisions remain in tact it is simply the movement or lack of that has regressed.
if we think of Independence as being defined by movement I can see how one could feel that independence is lost.
So I am not thinking in that way because I cant and wont value movement over and above freedom of choice, expression, communication, desire.
it's a bit like saying that Nelson Mandela had no freedom when he was a prisoner when freedom can be simply a state of mind.
This post has really made me think outside the box. After thinking I could outwit Parkinsons, I am starting to understand that I can and will fight this obnoxious disease, but I can never beat it. Gradually, at the moment quite gradually, it is leaving its mark on me. I am finding this harder to accept than when I was given the original diagnosis. I think that I shall have to work on the idea that when I lose one of my goals, I shall have to replace it with another.
Sorry, the above was all about me and it should be about you. You are handling things in such a positive way. You are an inspiration to us all. You never grumble, you find another way of doing things Thank you so much for your posts, they really are a bonus.
Sue : it is not easy it is not easy for me. I just keep trying to use my brain and find ways of balancing myself. If I didn't do that do that I think I would find it twice as hard and it's hard enough. That combined with cake of course 🍰
as usual you make me think about my approach to managing my life with Parkinsons . I know it isn't easy but find your posts very positive but with recognition of some of the realities of life. How you approach these difficulties and draw out what is important in life for you is inspiring.
My husband was diagnosed almost a year ago, though I think it had been coming for some time. I had diagnosed it myself about 2 years before. Nevertheless, I find I have spent the past year in denial & am only now facing his ( & my ) reality. Your beautifully written piece is so lovely & profoundly inspired. Thank you so much for sharing your perception. - SuSan
My daughter had a traumatic 10 years from 17 years of age. Some of her seemingly uncontrolled thrashing through those years took its toll on me. To survive myself I learned to separate my love for her from her actions. It was an enormous help. This separating Iv used in other situations too when I'm feeling overwhelmed.
I was the 'personal assistant' (caregiver) to both my parents for many years, while working full time. I watched my father help my mother (who had severe RA) as I grew up. When he was dx with PD, it was a time of denial and some frustration, then a realization that we had to do what he always said about our situation -- play the cards we are dealt as best we could.
You have done a great job expressing ways to do what we called 'changing the channel' (as if our thoughts are a radio or TV). When overwhelming negative thoughts entered our minds, we'd tell ourselves we needed to tune them out and focus on something else. It wasn't always easy to do. Looking back, I can say that a lot of what we worried about never happened anyway.
I wish I had found this site over a year ago to help Dad. You are all very inspiring, and offer great tips and information (far beyond a 10 minute visit with a neurologist).
Thank you for writing about what is happening to you. I am so sorry really to read about it but comforted to know that "we" may be able to manage the disease by making our own decisions about color or fabric in our clothing as a way of having some control. We will always have some choices I guess. We will probably always have some choice about what to eat too. I hope so. Maybe we can write out menus now that include enough fiber for example that can be used by a carer in the future.
I am of the opinion that any tiny snippet of information insight awareness from us all as a place for someone. We simply just need to keep talking about things don't you think!
I agree. We can learn so much from others who are going through the same things and those who anticipate it. We can brainstorm ideas and give each other courage.
Yes, I do agree with that also. I learn so much from everyone's posts. More so then reading through massive amounts of info. Sometimes I just get sick of it and want to eat cake.
Beautifully put! Yes indeed, very true. In fact, as we travel this PD journey -- or even the aging journey -- we gather depth, insight, and wisdom even as we lose the kinds of control and dexterity we always took for granted. And you, dear Colleen, are the quintessential example. As long as our minds are lively, we in fact serve each other as supporters, companions and teachers.
Colleen, Viktor Frankl, who was an Austrian neurologist, psychiatrist, and Holocaust survivor and who spent 3 years in Nazi concentration camps, would have agreed with you that "freedom can simply be a state mind". In writing of what he had observed about human nature in those camps, he said, "Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom".
Thanks. As I lie here feeling sorry for myself I needed that insight. I also looked after an ailing parent in 2013. The most important lesson that I learned from that is the independence we can gain from continually being open to adapting to new ideas and new ways of doing things. As long as we have our minds we have the ability to still contribute even when our bodies seem to be letting us down. However we do need to continually remind ourselves of this especially when the going gets tough. Thanks for the reminder.
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my first ever poem…..
How do you know when to go to emergency when PD symptoms are beyond erratic? 
Reprogram your brain to destroy laziness and improve focus
Genetic testing - nutrigenomics? Nutrahacker, Genetic genie, etc.
