For months, maybe years, after I was diagnosed with Parkinsons Disease I picked at my memories trying to determine how and when I developed it as if I could go back in time and change it. It is a completely pointless exercise since current research is unclear whether the cause is genetic or environmental.
I have mentally dismissed the genetics component so that I don't have to contemplate the implications for my children. That leaves me with plenty of scope for trawling through all the stupid things that I have done in my life that might have been the decisive environmental factor.
Could it have been the time when, after an all day drinking session I fell into a deep sleep while I was sat on a bar stool? I toppled backwards, still asleep and my fall was broken by the back of my head hitting the corner of the skirting board. Head injuries do seem to be quite a common factor in the development of PD so its possible. That was 20 years ago and I was diagnosed only five years ago so there is quite a gap. It's thought that by the time symptoms of Parkinsons have developed far enough to be diagnosed it's likely that 70-80% of dopamine producing cells have already been lost. My diagnosis was a milestone but I must have had Parkinsons for longer, maybe a lot longer. It is another one of the many unknowns associated with Parkinsons.
Is it pointless to keep replaying these memories over in my mind? Probably but obviously part of me thinks that it is important.
I started this blog as a way of sharing my Parkinsons stories but it occurred to me as I wrote it that if we could turn it into a collection of shared experiences of many people whose lives have been changed by Parkinsons, it could be so much more useful. A problem shared and all that. If contributors add keyword tags to their stories we may even be able to help build a picture of which are the most significant issues faced by people whose lives are affected by Parkinsons.
If you are reading this and you are interested in contributing your own story then I would love to hear from you.
I have had Parkinsons For 6 years very cruel disease.
ReplyDeleteHave to agree with you there Ted. It affects so much doesn't it?
DeleteIt changes your whole life.
ReplyDeleteThe disease and the medication in some ways.
DeleteHi m8 I was diagnosed with Parkinson's in 2013 but think I may have had it a lot longer than that,the reason being I used to go to the gym at least 3 times as week and this kept the synthoms at bay. Now if you saw me sitting hear you would not think I had Parkinson's I've got no tremor and look quite healthy my problem is falling repeatedly everyday 0n aggood day I'll maybe fall 5 to 10 times on a bad day it could be anything from 10 to 20 times I've bèen on various dosages of co _beneldopa but nothing seams to help most of my falls are indoors feet freezing when going through a narrow door way or passage and now with this lock down my walking has got a lot worse now take a rasagiline tablet once a day but nothing helps I've tried all the things I was told to do like count my steps when I'm walking stop and rock on my fèet plus other methods. Well hope this helps with your documentation
ReplyDeleteVery sorry to hear that your Parkinson's is giving you so much trouble. It sounds horrible. Thanks for sharing though, I can imagine it will help other people who are going through the same as you to find they're not alone. I guess the best we can do is support each other and hope that better treatments come soon. Best wishes.
DeleteI'd like to put your comment on a page of its own if you are interested. To make it easier to find amongst other things. What do you think?
DeleteI kept falling didn't know why people was picking me up in the street thinking I was Drunk then i was diagnosed that it was Parkinsons.
ReplyDeleteIt's a hammer blow isn't it? Would you be interested in writing a page for the blog?
DeleteThis comment has been removed by a blog administrator.
ReplyDelete