Photography-Take a positive picture of 2016

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Silverlining in clouds
A couple of years ago after my wife left i tried internet dating. I don’t usually supply details but this story is a bit different. One of the ladies I spoke to had MS and was confined to a wheelchair.She couldn’t go out on her own and only had the regular company of a carer who came in most days of the week to help out. Her only other regular company was a Robin in her garden she watched form her conservatory.There were several disabled people on the dating site and even though we were all different we all shared the bond of having seen people disappear and block us at the first mention of a condition. There was no romantic link between us. One day she confided to me she was feeling down from lack of company and from lack of purpose. So i madea suggestion as we all do to lonely ladies on dating sites. I suggested that she took photographs of the  Robin.  The idea was simple just take the best photograph she could.

Photography is a hobby that can be done on many levels. It can be done without even a camera(you can use a phone) Camera’s are available that have settings that can cope with tremor. Simple camera’s need little photography knowledge. Photography can be done by those completely inactive at home with pictures of pets. It can also be used to encourage increasing activity by going for walks and photograhing the scenery. With digital camera’s you can take as many pictures as you like.and delete any you dont want.
I have on occasions when needing something to do just gone out and taken photographs. Taking pictures in the dark I found look very dfferent. Photographs of the sky and clouds produced some lovely pictures. I have in the past organised a photography competition that lead to the production of a fund raising calender but best of all led to a friend finding a new hobby.
Photography is a very accessible hobbyavailable to people with Parkinson’s at almost any stage of our condition. So I have a request. Can anyone donate to me a basic digital camera. Nothing too fancy just and ordinary digital but with the cable to link it to the computer and a memory card. I wioll then loan it to members of the Young People with Parkinson’s in Cornwall Group or members of the Young Parkinsons Network.If you can help contact me at jonbest13@gmail.com.
Photography could provide you with a new interest and could form part of your new year resolution why not give it a try?
I am no expert but a few of my snaps are below.
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View from my back yard
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Copper surveying his territory
 

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Trying closeup mode
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2016

Someone said to me recently “when one door closes another opens” Is it any wonder theres a draught? So close you doors and have a think.What would you like to change in 2016. I don’t do News Resolutions as I am crap at them. Maybe this is a time to change. .

So what am I suggesting?. Just that we can all do something to improve our lives. One thing I am considering is taking up some extra exercise. It is a while since I played badmintton but it is time I played again. It is possible that exercise can slow progression so there is every reason to do more  exercise.
Eat better is another possibility. I am not going to give dietary advice as i have no expertise but most people can improve their diet( but if any issues take medical advice).
Do something for you. Perhaps a new hobby or something you wanted to try. Give yourself an aim or something to feel good about.
Reach out to others in the Parkinson community. This is rewarding and sometimes a learning opportunity. I know that some people are uncomfortable in close contact with others but that is all part of the fear. No one else is a prophecy for us we are all individual. We are stronger together.
Participate in research. This could be something relating to new medicines or procedures or completing questionnaires
Fundraise- helping fund a cure is always rewarding particularly when you see how much support people want to give us.
Something else- Perhaps lobbying- writing letters in support Parkinson’s, recycling to raise money, creating awareness or anything you can doto help(you might have a better idea I missed)
Final suggestion -You could fundraise or supporta completely different cause. There is more in us than Parkinsons and so many worthy causes. Don’t feel restricted to just one.
I would like to wish everyone a great 2016 and hope it is a successful and happy year for us all

Parkinson’s and how to cope

I wondered what mynext blog would be about? I have no plans, just write them as they come to me. Some of them will provoke thought and that is my aim today but I realise I might also cause offence. I will say this blog is not aimed at any one person. If I have individual issues I address them privately with that person.

I am involved in more than one internet based support group and with fellow Parkinson’s people offline. We are all different and cope in different ways. For me it is necessary to confront and fight Parkinson’s.  I do not see Parkinson’s in others as a prediction for me. My approach was so hard on my wife(now separated) who wanted to deal with it by putting it aside. I am a positive person who remains that way by getting things “off my chest”. I write poetry and prose that gives me release. Some poetry optimistic but some intensely dark. I use the poems to let me confront something and move on. I have a network of friends and family I can talk to.  I have a girlfriend who I hope will in future become my wife. This is how I survive and flourish. My children are the three wonders of my life.
If my approach helps you then please feel free to try it. We are all different and our Parkinson’s take different forms?  We are people though not just people with Parkinson’s and our lives differ. We can be dealing with relationship breakups, loss of jobs illness of relatives etc. People with Parkinson’s can suffer with depression and unless you suffered from it it can be hard to fully understand. We are more prone to depression but some of us will have depression that is not triggered in any way by Parkinson’s. Someone suffering from depression cannot overcome it just by positive thinking. It can actuallly make them feel isolated and blame themselves for inadequacy and stop them reaching out. Depression is sometimes mainly caused by chermical imbalances or affected by the coctail of drugs we take. We must not stigmatise others .with our own positivity. Sometimes they just need us to listen. Sometimes they may need medical advice.
We need to be open in our support of others. It is much too easy to assume our own approach fits all. We should not assume anyone needing help is just affected by Parkinson’s. Parkinsons doesn’t define us it may be something else. The inspirational stories show us the way and help many of us but they need to be supplemented by other approaches. I am not trying to preach just asking everyone who reads this to think a little. There is strength in numbers even more strength in our diversity together we can offer so much. We must not allow our collective identity to have negative effects on individuals. We are each the sum total of our experiences a wealth of resource however we express ourselves. As always I welcome feedback and other points of view.

Parkinsons Marketing

Parkinson’s Awareness week on 18 to 24 April 2016 is only 4 months away and as usual it will have a theme. This theme represents us so I would like as many comments as possible because it will be interesting to hear views on our expectations of publicity. I don’t know this year’s slogan so we have the opportunity to debate our views without feeling we have to support the coming event.

“Up your friendly” was the Parkinson’s Uk slogan for 2015 Awareness week and my initial reaction was what does this mean. It came accompanied by pictures of  bears. We have seen  Pudsey as a successful mascot for Children In Need  so lets top that with a whole shed load of bears, but theres a problem. If I was to sum up our bears with one word it would be “Truculent”  I like that word. Means ready to argue defiant etc. If you asked Goldilocks I am sure she would have said to beware of  these bears. They done look like bears who would share their porridge or that would let you sit in their seat let alone allow you to lie on their bed. They just don’t look friendly. It is the body language the folded arms is closed and with so many it just looks menacing I tried to write a poem for awareness week but nothing came to me. The up your friendly slogan didn’t inspire. Instead I wrote “Dignity” Yes it does ask people to be nicer but does it with a hint of punk with some  angry sentiments,

Would you take away someone dignity. their confidence,  their independence?

A woman cant use cutlery properly  because Parkinson’s has impaired her manual dexterity and her hand shakes ,

She has difficulty eating and swallowing.

Would you laugh?, would you point? would you stare?,

Would you understand? ,No one likes public humiliation .

If you take their dignity they  will the ever eat in public again.

 

Would you damage someones confidence?

A man freezes at a ticket gate at a train station do you stay calm and wait?

Or do you push him? Do you heckle and berate?

Rushing him will make it worse.

Will you be the one too finally shatter his confidence.

 

A man walks into the supermarket.

He is unsteady on his feet and slurs his speech.

Would you shake your head and think him drunk?

Would you listen carefully enough to hear him explain he has Parkinsons?

Would this make him anxious about being in public

Would you shake his faith in his independence?

 

My poem dignity was hardly in the same spirit as up your friendly. So what is my problem wth “Up your Friendly? It came across to me like a Mission Statement of a large Corporation as bland. A slogan chosen to inoffensive rather than effective. I felt they were playing it safe. It is easy to ask people to be more friendly to those with Parkinson’s. but everyone should be more friendly to everyone.I have to say though it does fit with wanting people to understand and be patient with those struggling with Parkinson’s symptoms.

The Parkinson Society Canada took a different approach with the TV advert a struggle. For me they went too far their fight that the person with Parkinson is too sudden and brutal to represent Parkinsons accurately. It was certainly not bland but my problem is although eyecatching and  its shock value would be effective in raising money it might be very disturbing to anyone newly diagnosed. That in turn could lead them to disengage and isolate themselves.

What do I want? In recent years Parkinson’s UK themes Taking back control , Put yourself in my shoes, Find a cure have all had their merits but I prefer “find a cure” a positive message that people with or without Parkinson’s can join in with. It still had the flexibility on the need for a cure so that messages about the reality of Parkinson’s can be included.

An example of excellent marketing is the “Race for life”, A positive and easily understood title that is still reflecting the serious side of the charity. Three words that have become a brand.

Members of Parkinsons UK seem most comfortable with a positive message they can support. What do you want? Please use comments to add your thoughts. Suggestions for future slogans welcome. I will discuss our views with Parkinson’s UK and although too late to change whatever decisions made for the awareness week in April, as Parkinson’s is for life not just for awareness week it might provide us with direction for the future.

Your views please?

Collective Success

Collective Success

Do you ever feel like enough is enough? Do you ever wonder when it is time to give up?
I did today.
I spent about 3 hours with my boss a good caring man. I have been well catered for inrecent years by bosses that give support. Unfortunately my immediate thoughts after this support were not good. We listed all my life and work issues and i thought what hope have i got of dealing with all that? It felt like my act practised for Britains Got Talent of Juggling whilst bashing my head against the wall will not get through to the next round, Just too many issues and too many people around me struggling.
Thankfully moments like that dont last. I was snapped out of this by an unusual question? While my boss was chatting to a colleague our “sharing best practice” procedures came up. He turned around saying I was creative maybe i could think of a better name, Creative me, no not creative in the slightest. Well that is how it used to be. Other people had ideas I made them work. In one aside from my manager with no particular intent I had been reminded I do have talent and I am creative. So what did I come up with , I expect you have guessed. Collective Success is the answer I will give him tomorrow.
I don’t make New Year resolutions buti do have a New year message. 2016 is going to be the year of collective success. Friends, Family, Colleagues. People with Parkinsons, Everybody. We are stronger together. Share knowledge skills etc . Help each other  and we can have collective success, A better year for all. a better life for all. Not much to ask is it?
Ps I know it is not New Year so blame my boss, he reminded me of my creativity.

International Mens Day

Like everyone else I have wondered if this is necessary. Promoting mens health, well I just take a look around the office I work in, to see a bunch of the healthiest fittest men you could imagine. Looking around more closely I had a revelation”Oh my god. I need new glasses” So after having been to Specsavers I had another look and admit some of us are more prone to athletes foot than taking exercise. So I investigated further and found the aims of International Mens Day all worthy and as well as improving health there are promoting male role models and improving gender relations.

A message went out in my workplace that this year we would celebrate it. So I put aside my usual rule of not volunteering and offered my services. I was congratulated on being the first volunteer and as the cogs slowly aligned in my head I realised I was the only volunteer. After contributing ideas about a quiz sheet and nominating colleagues as role models I agreed to be one of the speakers or what would later become the only speaker.

I produced a wordsearch with words linking to Mens Health and provided a copy of the Michael J Fox book Lucky man as a prize. Chosen as he can be regarded as a role model and the book is inspiring. I also prepared my talk. So I wrote my story . I am not saying I had the answers for anyone else but if I accidentally include anything useful then that was a bonus.

I detailed the past twenty or so years where as well as my job and family reponsibilities I also had ten years as a school governor, twenty year serving the local Civil Service Sports and Leisure Committee, a spell as a Union Rep and plenty of fund raising. This done whilst at times life throwed challenges at me. Including my diagnosis of Parkinson’s and the breakup of my marriage.

In the next few years after my diagnosis I faced my condition and raised about £8000, placed a couple of dozen articles in the local papers, and ran activities for others with Parkinsons. I was even in contact with the marketing manager for Parkinsons UK and was able to get my voice heard when campaigns were in the formative stage.The keys to my success confidence, communication and co-operation. My apologies as that was not a planned 3 C moment but is pure coincidence. A different 3Cs being a management tool in my office.

My successes all had help and support from friends and colleagues but without my own self belief would not have happened.

As I have already said life throws challenges at you and in 2013 it became apparent something was wrong between Liz and I and we separated. I was unprepared for this but managed to cope but needed the support of friends. Rebecca and Mandy colleagues were particularly important. We both have new partners now but we separated with the children remaining loyal, understanding and loving to the both of us. I have discovered that society is biased against fathers during separation but have not suffered for it. This is largely due to Liz who accepts my love of the children is as important as hers. We truly share parenting and although society expects conflict we trust each other and the children benefit and trust us as well. We will divorce but we will work together to ensure the best overall outcome.

I am still here in my after 23 years and I have many bosses and colleagues that I owe thanks. I need to highlight one in particular. Avril who was my manager when I fell apart after the separation. She was very patient and allowed me time but when I needed it encouraged and pushed. Her faith in me made a difference and allowed me to recover. My managers since then Jackie, Paul and now Shaun have all been supportive.

So here I am writing for International Mens Day without a rhyme in sight. Everything I have achieved has benefited from others help, from listening and from my own self belief so I give you three words:-. Confidence, Comunication, Co-operation.

My talk was successful and gave me a boost. It showed I am still respected and I have experience and talents that are valued. I have Parkinson’s but I still have much to offer. International Mens Day won’t reach most that need it but will reach some. Addressing male issues is not a threat but just common sense.

Tips for People with Parkinsons

In my new blog i will be considering tips for people with Parkinson’s

1) Pee before cleaning bathroom. This is because of the need to wash your hands before handling personal sensitive bodyparts. Some of those with bladder urgency will know what happens when you run a tap.

2)Dont hold a conversation while walking with a cup of tea

3)When using a hammer dont hold the nail with your shaking hand you might hit your fingers. Actually don’t hold the hammer with your shaky hand you kmight hit your other hand not just the fingers. Forget that and just get a nail gun.

 4)Dont tell people you have a weak bladder they will never believe you spilt your tea.
5)Dont keep money in deep trouser pockets shop assistants will be suspicious of theindeccent amount of time taken toretreive it especially if you have lost manual dexterity