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?