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The lounge Relax, take a break from photo and camera talk - have a chat about something else for a change. Just keep it clean and polite!

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  #31  
Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

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Originally Posted by Phill D View Post
John this definitely a worthwhile task and one I'm sure you'll do justice too. The noise in that first image is great as it is I wouldn't rush to reshoot it. This is obviously going to be a very personal project and so it should be as it will be all the more powerful for that. However maybe you should link up with some other help groups to see how you could exploit your project and as you say help raise awareness. You may end up doing more than one version say one that is just personal to you and another that possibly includes other sufferers who are perhaps worse off than yourself. As was said earlier you do need to consider the conclusion carefully and it will need some lighter moments. To me this has the potential to be very significant for other Parkinson's sufferers as well and I wish you the very best with it. Hang on to the book and film rights though.
Phil, that's an excellent point about including other people or groups. I think I want this project to be mainly about me, for two reasons. Firstly, I don't know exactly how this project will go, there's a bit more to it than just going out snapping pretty landscapes like I've done in the past and if I fail to complete it to a high enough standard it will only be me that is disappointed. If I succeed, then I can consider a "Part Two," where I do involve other sufferers. It will be easier to explain what I hope to achieve with the evidence of an already completed project and will give those prepared to collaborate with me an idea of my style and capabilities as a photographer, to help them make their own suggestions and imput.

Secondly, it's about what I want to portray for this particular project. Most people know very little about Parkinson's, unless they are sufferers themselves or know someone who is. I certainly didn't, until I met someone through my outdoor pursuits club who was a long time sufferer, but even then my appreciation of the condition and the difficulties he faced only scratched the surface, as I now know. It's hard even for my own family to understand sometimes, so what chance do I have with officials and bureaucrats?

Perhaps what people are more aware of, and associate with the disease, are the later stages where victims become very seriously physically impaired and heavily reliant upon a carer. In fact it is a slow progressing disease in which symptoms worsen incrementally, often over a long period of time. There are many people like me who have quite mild symptoms, often to the extent that casual aquaintenences would not even notice any problems. Indeed, the symptoms are variable and often very much "on/off." A particularly difficult day may well be followed by one with hardly any problems, in fact the effects of the illness can fluctuate significantly within the course of a day.

The real problem for me is the cumulative and attritional effects of many, many small issues, which combined can become a powerful obstacle to leading a normal life. It is a complex, fluctuating disease with a wide range of possible symptoms. Serious and unpredicatable side effects of the medication also play a huge part, as do mental problems including depression, capacity to concentrate, mood swings, increased emotions, obsessive behaviour and altered personality. It's really at least some of these less obvious issues against a background of quite mild but nethertheless very debilitating symptoms for people like myself in the relatively early stages of the illness that I wish to communicate.

I think that's why, at least to start with, it needs to be my story and I'm sure you can appreciate my concern over my ability to deliver. Time will tell!
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  #32  
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Re: Day After Day - Living With Parkinson's

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Originally Posted by maccabeej View Post
John, I noticed on the occasions we've met that you have struggled with the manifestations of Parkinson's. I have no idea of what it's like to be in your shoes but this seems a brave thing to do and I wish you every success. It may be difficult to do and I don't have any direct suggestions but something showing the social and psychological impact not just the physical may be worth considering. More power to you. Jim.
Thanks Jim, it's the social and psychological impact that I anticipate being the hardest to portray. I'm sure it will require some creative thinking!
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

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We had a stiffening pad for our old black leather sofa which made it nearly new and firmer seating again

John, also square blocks of wood at each corner (and maybe midway if you have feet there too) if you have round feet the square blocks (of the height increased desired) should have recesses - so the existing feet slot in and the sofa does not wobble over.

If you cannot do that, do not have a friend who can - send me photos of the feet and, details of shape and diameter - I shall ask Nick to make these for you (he always has "just that bit of wood; is a magician with a router" and marvelklous
Thank you very much for such a kind offer, Chevvy. I think I'll try a booster cushion first so as not impact upon other users, but if that doesn't work I'll come back for more details.
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

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Some great responses so far guys and thanks for your encouragement for the project. Don't hold back on critisism or suggested improvements for the pictures themselves, though.
I can only echo what the other forumers have said John. Black & White looks good, and good on you for running with this great idea which I am sure will give you and others a lot of interest. During my tussle with the Big C, I found it very therapeutic to write my up and down moments on paper. Using the camera is a variation on the theme I would think.
One suggestion I thought of with the first photo - the shot of the hand is a strong and emotive one, but I wondered if having the hand outstretched, reaching more horizontally, may work better. Just a thought.
Good luck with it all.
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

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Originally Posted by jamie allan View Post
John,
I didn't know how to respond to your post initially - it made a real impact. After a night thinking about it what I really want to say is:-

What a project and what a strong image the first one is. Monochrome is perfect for the subject. Technically it may not be the perfect picture but emotionally it is. I could see that being used as a poster campaign for the Parkinson's UK. It really conveys a message.

I hope you will continue your project.
Thanks Jamie.

No worries about how to respond, I don't wish to put people in the situation of struggling to find the "right" words of comfort or sympathy! Comments about the logistics of the project or critisism of the photographs is jsut great. Ulfric has certainly made me think about the wisdom of publishing a shot of my flies!
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

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Originally Posted by Ulfric M Douglas View Post
I certainly don't mean go out and spend 900 on a new couch!
I just mean get another couch, a taller one, by any means that doesn't cost much money.

Friends, small-ads, reclaimed furniture shops. Maybe that's something you don't do ... I have no idea.
I do however think it is an important thing.

If you break your leg you don't 'make do' without a crutch. Same principle.
Haha, most of our furniture is secondhand, if only for the reason that my wife likes that sort of thing and enjoys finding a bargain. In fact, she has a particular knack of finding what she wants ........ but so far not a sofa bed - although plenty of couches that would have been perfect otherwise. I'm sure that one will turn up eventually; our present one was secondhand and it cost us.....nothing!

In the meantime I will definitely try the booster cushion for the elderly idea.
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Re: Day After Day - Living With Parkinson's

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Originally Posted by Chevvyf1 View Post
John, I feel sstrongly that you MUST convey how family laughing at you, makes you feel I know so many people whose illness is worsened because of this and low self esteem - its criminal mental bullying and wears people down, from the inside out. Because its family - one puts up and shuts up - but their voice should be heard

This book should be marketed to families of those with this crippling illness and include ways and means of helping YOU to a more fulfilling day
x hugs your so not alone
My family do laugh, but try to encourage me to laugh with them. They know by now when I'm starting to take my problems a little too seriously and need to lighten up. They've had to deal with some rather difficult moods from me previously and Debbie certainly wouldn't want me to slide back into depression. I suppose that strictly speaking I still have depression, but for the moment at least it is well controlled with a minimum of medication. I'm starting to realize that the only way to survive this without going mad is to learn to laugh at myself on occasions and try not to take things too seriously.
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Re: Day After Day - Living With Parkinson's

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A friend who lives a couple of doors away is a Parkinson's sufferer. He has the full range of visible symptoms - shuffling gait, hand tremors etc..

He's quite laid back and cheerful about it, I think partly because he goes to a support group of fellow sufferers. He always seems to have an amusing anecdote. Apparently Parkinson's sufferers have in common difficulties with going through doorways. The mind wills the body to go through the door, but the body becomes immobile. He said that a group of them at the centre wanted to take a lift. The doors opened but they all froze and none of them could get in. After a while, the lift doors closed and went to another floor without them!

Many years ago there was an excellent television programme by Jonathan Miller about a sufferer called Ivan, who wrote a book about his experiences. I see the book is still available:

http://www.amazon.co.uk/Ivan-Living-.../dp/0374178437


Jim
Thanks Jim, it look like the book is out of print new, but available secondhand. I've noted the details and will search later on AbeBooks, which is an excellent site for finding used books at bargain prices.

I've tended to shy away from support groups, partly I think through fear of seeing my future and partly, though somewhat illogically, because I don't want my life to become dominated by the disease - as if it isn't already! I visit a Parkinson's forum occasionally but I do find it rather sobering, whereas photography forums like this provide a degree of escapism....so what do I do? I bring my problems on here with me! However, this project might hopefully be a more positive reaction to my situation and provide an added impetus to my photography.

I don't tend to freeze going though doors, although my entrance or exit is often clumsy and far from graceful! However, I did have to visit a particular building several times last year which had a revolving door. I couldn't co-ordinate mind and body to enter it whilst still spinning and had to wait for it to stop. Trouble was, other people kept using it and sometimes I had to wait ages!

I haven't exactly developed a shuffle yet, but some days my legs, particularly the right one, are reluctant to walk, I cannot get into a rythm and my feet don't lift very far off the ground, making it more likely to trip or stumble. One tip I heard, which actually works, is to imagine there is a ball in front that you want to kick. With every stride of that lazy leg pretend you are trying to kick the ball!

Having said all this, I suprised myself last week by managing a 5 mile walk and I felt really good about it.
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Re: Day After Day - Living With Parkinson's

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Originally Posted by Floribunda View Post
I can only echo what the other forumers have said John. Black & White looks good, and good on you for running with this great idea which I am sure will give you and others a lot of interest. During my tussle with the Big C, I found it very therapeutic to write my up and down moments on paper. Using the camera is a variation on the theme I would think.
One suggestion I thought of with the first photo - the shot of the hand is a strong and emotive one, but I wondered if having the hand outstretched, reaching more horizontally, may work better. Just a thought.
Good luck with it all.
Thanks for the suggestion, Lyn, I think I do need to revisit that picture!

You are so right about the therapeutic nature of writing down your experiences and feelings during adversity. I was encourged to do the same by my mental health councellor during the worst of my depression and it definitely helped.
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

I don't think all the shots need to be in monochrome. Some shots may work better in colour, some a little desaturated, some over saturated maybe. Of course, maybe your couch is a hideous colour and you had to convert to monochrome for that shot.
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Re: Day After Day - Living With Parkinson's

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I don't think all the shots need to be in monochrome. Some shots may work better in colour, some a little desaturated, some over saturated maybe. Of course, maybe your couch is a hideous colour and you had to convert to monochrome for that shot.
Thanks David, got it in one about our green couch! I thought I'd at least start off in B&W for a more reportage, documentary style of image, but I'm sure you are right that some shots will work best in colour. I'll pay attention to that as I (hopefully) progress.
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Re: Day After Day - Living With Parkinson's

John great start I will follow this with interest have you considered going Powerpoint with possible video clips and making a CD/DVD as well as a book I think this also would help show your situation?
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Re: Day After Day - Living With Parkinson's

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John great start I will follow this with interest have you considered going Powerpoint with possible video clips and making a CD/DVD as well as a book I think this also would help show your situation?
Video is a great suggestion, Ed, but completely outside my shpere of experience! I've yet to even turn it on on my E-M5 and quickly assigned the designated button to another function instead!
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My hat goes off to you, John. This project is a gift, of sorts, to those of us who are lifted up by your courage. Thank you.
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Old 10th November 2012
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Re: Day After Day - Living With Parkinson's

The television programme about Ivan Vaughan showed him swimming. The Parkinson's symptoms completely disappeared in the pool and he powered up and down like an athlete.

I really think a support group could help!

Jim
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