Hello Ireland

Just heard about a girl not far from us had both hands done she was in and out of hospital in the one day.

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https://parkinsons.forumotion.com/viewtopic.forum?t=130

Thank you Lucy, doc says give it 2weeks if ok good, otherwise op.time will tell..

Really hope injection works well for you ems. God ems mabey jb is going to surprise us all must go and start cleaning just in case

Good morning all, sun is shining and in 20mins on my way to waterford regional hospital for injection fingers crossed..

I have been listening to the radio this morning and they were in kilkenny (hector) but guess what he gave a special hello to a group of people from Ontario yes jb..they are staying in a hotel in kilkenny.anyway catch up later guys..em

Hello to Jb and everybody..sun is shining here it's lovely..
Jb,Thank you from Seán it's his final year.

Take care all
Em

Wow! What is going on here? I have to lineup to post a hello to you guys, the board is busy, a flood of people and thoughts. Great!

But sad about your neighbour's son Clem
I will hold him in my thoughts.

Hi Anne. good to hear you.

I will come to Ireland one day and surprise you all.

Good luck at school Sean, well you tell him Emma.

Still suffering hot and dry here. Gardens are very dry and so no raspberries to speak of Clem. Maybe I can send you maple syrup in return for some Jam?

Aw, fake rubber or not, that guy shouldn't show up at an event with such security concerns wearing knives. Cops shouldn't grab guys for not smiling. Good publicity for PD masking though.

And that is about it for me tonight. Talk later..
jb

lucy wrote: I also picked up a book called My Mum has parkinsons, but to me it was just to scarey to show the children. The book seemed to say that once you got parkinsons you needed help with everything.

On reading the Granddad book - I agree totally - it is very negative.
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David Green is still in a coma. they had to remove his forehead to relieve pressure on his brain. His mother, father and two brothers are with him. pray

Yes Clem Iv'e been in there a few times. I also picked up a book called My Mum has parkinsons, but to me it was just to scarey to show the children. The book seemed to say that once you got parkinsons you needed help with everything. Thats my thoughts of it anyway. It's a shame about the drop in center but I am not surprised. Look no further.

I was at Neurological Institute yesterday. they must be vampires - seeking blood
There was a sign about a Parkinson drop-in center. Being curious, I inquired.
Sad to relate. There was a drop-in center. It was manned by volunteers, but no one showed up
so after a few weeks they closed.
Its a nice room - well stocked with literature - which you can take - such as "My Grandad has Parkinson's by Virginia Ironside"
seems a shame
but I never knew it was available
anyone else?

Good morning all..

So nice to hear from you Anne..sorry you haven't been well and thank you , Clem thoughts and prayers for David, family and all involved.

Lucy thank you soooo much for a refreshing and lovely few days in your home..Sean says 'wish i was still there',yea back to school today lol and great to see you looking so well.. jb, marie, patsy, and everybody..take care all..

Em x

MarieB wrote:Hi Everyone,
Just checked in to see if things were picking up and Im delighted to see that everyone is coming out of the woodwork (as Ann describes it). Perhaps there's a message there for me..........when I'm away.........!

Sorry to hear youve been so poorly Anne, thought you had been very quiet for some time. Would you know anything more about the speakers for the Weekend in Kilkenny by any chance? Still nothing from PAI. It would be good to know whats on the programme beforehand. Will be an opportunity for us all to meet up at last. You coming too Jb?

Marie I have heard nothing about who the speakers are but will ask, and get back to you. The usual lineup would include a neurologist, nurse specialist physiotherapist and the topics the medication and so on. Maybe it will be a bit different this time? For me the high point and the most poignant moment in the same event last year was at the dinner. Des Lynam was singing when one of the PALS committee members the same year joined another lady who dances using a walking frame, and Frances got up and the two skated around the room on their walking frames, and no one else got up to dance that dance but watched. To me it said Parkinson's was not going to win. Goodnight.

MarieB wrote:How sad Clem. Must be awful for his family and for anyone who knew him. The fact that it happened so far away doesnt help either. Will certainly remember him and his family in my prayers.

Anne, thanks for coming back so promptly but I'm still not convinced about MW''s version of events. He didnt seem to have any speech volume problems when he talked to local news reporters and the fact that he's smiling in the photo you mentioned sends mixed if not confusing messages to those who havent come across Parkinsons before. They probably think we all have facial masking and we can't smile!! In my view his overall profile did nothing positive for the cause of 'Raising Awareness' in the general public. As a family man, taekowondo expert, whatever........the fact that it was reported first in Private Eye says it all. Think he got off lightly being 'given words of advice' and think he know it too.
Think Ive said enough but has anyone else got any comments.?

At least we are responding to each other. We're bound to have different perspectives but thats a good thing, isnt it? Hope no offence taken Ann. It doesnt take much to get me on my soap box but as Ive pointed out many times before......its not too difficult to knock me off it......but you can guarantee, Ill be back!

Marie: No offence taken, and it is good to see honest debate. Sounds as though he behaved foolishly. You can consider yourself safe on your soap box!

MarieB wrote:How sad Clem. Must be awful for his family and for anyone who knew him. The fact that it happened so far away doesnt help either. Will certainly remember him and his family in my prayers.

thanks Marie, Ann and all
David is being operated on now, his brain had swelled 23%
The lads were backpacking around Australia, picking up casual work along the way
They were working on a building site, they had an early start the next morning.
They had a room in a boarding house, They awoke in the night to screams from the room below them
A girl had been thrown through a glass table. They bundled the man out and closed the front door
He returned with a hammer and smashed their skulls.
The man who did it then turned up at the hospital where he was arrested

How sad Clem. Must be awful for his family and for anyone who knew him. The fact that it happened so far away doesnt help either. Will certainly remember him and his family in my prayers.

Anne, thanks for coming back so promptly but I'm still not convinced about MW''s version of events. He didnt seem to have any speech volume problems when he talked to local news reporters and the fact that he's smiling in the photo you mentioned sends mixed if not confusing messages to those who havent come across Parkinsons before. They probably think we all have facial masking and we can't smile!! In my view his overall profile did nothing positive for the cause of 'Raising Awareness' in the general public. As a family man, taekowondo expert, whatever........the fact that it was reported first in Private Eye says it all. Think he got off lightly being 'given words of advice' and think he know it too.
Think Ive said enough but has anyone else got any comments.?

At least we are responding to each other. We're bound to have different perspectives but thats a good thing, isnt it? Hope no offence taken Ann. It doesnt take much to get me on my soap box but as Ive pointed out many times before......its not too difficult to knock me off it......but you can guarantee, Ill be back!

I was sitting minding my own business says the man the police arrested for not smiling. The police have more to do than search through the crowed for facial expressions. Much as he says different I believe what the police say ie he was arrrested for a public order offence. Sorry pd or no pd no sympathy for him from me.

ClemMcGann wrote:say a prayer for aiden green, a neighbour, went to school with my son, in a coma in australlia, father flying out now, victim of a hammer attack

Yes indeed. Harder again to take when so far from home.

MarieB: Part of the problem with Parkinson's is that speech volume is decreased often to the point of not being heard at all and especially when in crowd situations. Not condoning carrying of rubber knives but I would love to know if he was given a chance to speak and I rather think not, judging from what the police actually said. Some people are affected with speech problems from the start and some very little, and facial masking is also capricious in who it chooses to afflict. What bothered me was that it was negative and the report did not really deal with it very well. He was silly in the extreme to carry anything that might have looked suspicious, especially as the police would have been instructed to tackle and restrain first and ask questions later which is what they did. The props for a taekwondo demonstration he gave were the problem.

I expect we will never know, although the following may elucidate:"‘It could have been done better. I was arrested for not smiling. I have Parkinson’s.’
A spokesman added that the arrest was necessary to avoid a breach of the peace because he was standing near a group of protesters.

But Mr Worsfold, who was diagnosed with Parkinson’s in 2010, said that one of the symptoms of the disease is muscle rigidity, which can cause his face to become expressionless and mask-like.

Mr Worsfold, who had stopped to watch the men’s road race in Leatherhead, Surrey, after holding a Taekwondo demonstration nearby, said officers told him he was being arrested and taken to Reigate police station because he was not smiling.

'The police grabbed me off this seven-foot wall, threw me to the floor and cuffed me.'

Martin Worsfold

‘I was sitting minding my own business.... '

Mr Worsfold, who lives in an £800,000 three-bedroom house in the picturesque village of Ockham near Woking, has since asked for a letter of exoneration from police.

Surrey Police said he was initially arrested on suspicion of a public order offence but was ‘given words of advice’ before being ‘released with no further action’.

A spokesman added that he was found to be in possession of a legal folding knife and several rubber knives which had been used for his Taekwondo demonstration."

Seems a young man from the photo I saw, married with a young child....In the photo he was smiling, and the quotes used by the national papers were taken from a local one.

One good thing, Marie, some people will now know about facial masking that didn't already.

Read more: http://www.dailymail.co.uk/news/article-2185494/Olympics-2012-Parkinsons-sufferer-Mark-Worsfold-54-arrested-police-smiling-cycling-road-race.html#ixzz24kQIcLnO

say a prayer for David Green, a neighbour, went to school with my son, in a coma in Australia, Aiden, his father flying out now, victim of a hammer attack

Hi Everyone,
Just checked in to see if things were picking up and Im delighted to see that everyone is coming out of the woodwork (as Ann describes it). Perhaps there's a message there for me..........when I'm away.........!

Anyway. Its good to hear from you Clem. Dont think Ive come across you since I joined. A soul mate for Jb I hope who faithfully carries on posting when the rest of us go to ground. Your experience with the commentator sounds horrendous Jb. As much as I like to talk, I prefer it to be on my terms......bet you sounded great anyway.

Marks experience leaves me a little perplexed. My reading of the article Clem has so kindly posted, indicates that Mark was found to have a 'number od knives' on his person which turned out later to be made of rubber!. I have no time for rough handling by police officers and if as Ann says, he was thrown to the floor and handcuffed just for 'not smiling' then there is a serious case to answer. My reading of the aftermath is that Mark wants to play down the whole incident because he seems very placatory to the police after their apologies. My point, is that there is no excuse for police to so roughly treat an innocent bystander such as Mark turned out to be. The fact he has PD shouldnt enter into it. Mark should know that you dont go to high profile events, sit near 'protestors' and behave in a manner which gives police any excuse to remove you (presumably Mark could speak and say why he 'couldnt smile' if that was the real reason for removing him) and as for wearing a set of knives!, to such an event...he should know better!
I'll probably upset some of you for saying this ( and it wont be the first time!) but I do think there is more to this story and one needs to read between the lines before reacting to sensational headlines (Guardian or not) .

Sorry to hear youve been so poorly Anne, thought you had been very quiet for some time. Would you know anything more about the speakers for the Weekend in Kilkenny by any chance? Still nothing from PAI. It would be good to know whats on the programme beforehand. Will be an opportunity for us all to meet up at last. You coming too Jb?

Lucy, you dark Horse!!!! you know what Im talking about but great news. You should think about inviting Ems as well............but maybe not after the long weekend. Did Sean do as I suspected?
One last thing Yeeeeeeeeaaaaahhhhh UP DONEGAL!!

I was watching the tall ships sail out of Dublin bay - a truly awesome sight
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chalk up another 10 jars of blackberry jam
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I prefer Loganberries, but the crop was not great this year. Loganberries are low in pectin. difficult to get it to set. I leave the seeds in, no one has complained. (and no pears)
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bad story that: http://www.guardian.co.uk/uk/2012/aug/08/olympics-spectator-parkinsons-arrest-smiling?newsfeed=true

Olympics spectator with Parkinson's wants 'exoneration' after arrest

Mark Worsfold, 54, says he was handcuffed by Surrey police officers 'for not smiling' while watching men's cycling road race

"words of advice" implies that he was at fault:

Surrey police said: "There were a number of factors which led officers to make this arrest, including the fact that the race was rapidly approaching, the heightened level of security due to the high-profile nature of the event and the sheer number of spectators in attendance. These were fully explained to the individual concerned. He was given words of advice and released with no further action."

ClemMcGann wrote:your young man story is scary
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reasonable crop of blackberries - so its about time to make some jam -
23 jars done
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Clem, I am meeting you here also! Have had flu and shingles and am just about back on my feet.

JB it must be the loneliest outpost there is, having PD. Right now it feels that way, and I read of a man arrested in England while watching as a spectator the Olympic cycling, because... get this... he wasn't smiling!!!!!!!!!! So he got to see the cyclists' ankles as he was, after being dragged off a wall and thrown on to the ground, before being handcuffed and led away. He was in police custody for 5 hours. The police apologised, but how long do we have to tolerate the things that are assumed about us just because of ignorance? Should we wear a sign that says " I have Parkinson's so I am not smiling". Thoughts?

JB you have found this forum to be a second home if I interpret correctly as you are here most days. I never thought when I started this forum that good souls such as yourself and Ems and Lucy would come out of the woodwork. Ems in particular has been a lifesaver and is the rock on which this forum depends.

Having PD has forced a rethink on life. Them and us is now non-PD and PD people, and my originally unhappy ambivalent attitude to being a part of the PD community has slowly been replaced with pride. We are nice people and we support each other often well beyond all expectations.

Clem, I used to grow loganberries and would make loganberry and pear jam, freezing the berries until there were pears available, straining both to remove the seeds and pear stringy pith, and it WALKED out of the house, the jam I mean! Gooseberries and ginger, rhubarb, I was the jam maker for the extended family and anyone who asked, all grown in my garden.

For those with an interest, Folláin have jam available in Dunnes Stores made without sugar, 100% fruit. I have tasted the raspberry and it would grace the most discerning table! When my eldest was little we lived in the USA and her baby food was food, nothing added but water - plums were plums. peas were peas, no such thing as beef hotpot with hydrolysed this and that etc... Gerber was the maker. My second, born here, had the stodgy baby foods available here when I could not make my own.

Big gaelic match on today Donegal v Cork and we know who is going to win dont we

UP DONEGAL

Have Ems and Sean staying for a few days so it's been nice and even the weather's behaved

your young man story is scary
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reasonable crop of blackberries - so its about time to make some jam -
23 jars done
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Clem, I'm more at ease with a hoe in the garden than with a microphone in Town.
I bet you know what I mean.

We have a Walkathon fundraiser coming up on Sept 8. It is sorta fun to do that, it is about a mile stroll through a local park. It is part of a national program for raising funds and is the biggest initiative that happens each year.

Best wishes to all my friends in Ireland. It is good to be part of a network. Cause it can be lonely if one has PD and tries to hide.

Ah, and I just heard yesterday about a young man in town. I was asked about our pd group by a minister in town I know. «He wanted his parishioner to seek our group and I gave him the contact information. Meanwhile this young man decided he didn`t need any help and cut three fingers off using power tools, I sorta wished I had of tracked him down and brought him in first. Anyways, denial only goes so far.
So, be a friend to someone, stay in touch, be bold, brave and do your best. Pd sucks. My friend in San Francisco says it isn`t for wimps. and I agree. Keep up the fight everyone

Best wishes to all of you,

jb

Wish i was in Ireland today at a local pub and you all came in and we had a party!

It was broadcast this morning (wednesday 22nd)
I didn't know until I received phone calls afterwards
it can be seen at http://www.tv3.ie/3player/show/155/52154/1/The-Morning-Show
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jb - i bet you would will be much better next time

ClemMcGann wrote:
i don't know when the tv3 morning show will be broadcast, i didn't feel that happy with it, it was aisling o'loughlin asking me questions, if anyone sees it - please tell me.

Clem, I was at a Parky Function in town, the radio guy asked if I would talk live on the radio and I agreed. What will we talk about i asked and he said he would just ask some questions. A few minutes later he shoved the microphone in my face and asked me to tell him something about ParkinsonsDisease for 20 seconds. I just started blurting stuff. uugh, I wasn't happy with that either.

Good days to everyone,
Special hi to Patsy

jb