Another blog about raising the Awareness of Parkinsons

Unfortunately, some would even say fortunately, due to family commitments over the next couple of months, I am not going to be able to take as active a role as I had hoped in getting this off the ground.

However, I know that there are a number of people more experienced than I am and with more expertise who could help.

To this end Pen1, who has been working very hard behind the scenes, has very kindly agreed to be the first point of contact for anyone who may be interested in helping, in whatever capacity they feel they are able.

If you feel you have the time and are willing to maybe join a Committee, please contact her.

PLEASE, PLEASE THINK CAREFULLY ABOUT THIS. SO MANY PEOPLE HAVE SUPPORTED AND GIVEN IDEAS THAT IT WOULD BE A SHAME TO LET THIS OPPORTUNITY GO TO WASTE. IF YOU FEEL STRONGLY, PLEASE CONTACT PEN1 EVEN IF YOU ONLY HAVE LIMITED TIME TO SPARE. YOUR COMMUNITY NEEDS YOU.

You won't get rid of me that easily, it is just that I really won't have time to use my laptop regularly Thanks to everyone for their support. Which is much appreciated.

Sue

15 Replies

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  • Hinsue

    R u having a "holiday"

    Lol Jill

    :-)

  • Hi Jill

    If only! My brother in law from New York has invited himself to stay with us for 3 weeks. Followed immediately by a visit to Surrey to attend my cousin's 75th birthday. We also have a new grandson due at the end of July. We are involved almost daily with our grandchildren and I really hope that I will be of some help with this new baby. My husband is hands on otherwise I could not manage.

    I know that I will not be able to give as much time as the awareness project deserves so after a lot of thought I have reluctantly bowed out for a little while.

    Enough about me. Sorry I missed your party. Are you settled into your new home yet? I need a bathroom just as you described as I find taking a bath really difficult now. However, as I rather foolishly booked a holiday for September, this will have to wait a while. Hope your falls are not as frequent as you last said.

    Do take care and I will be in touch before long. I may even have my own party for you this weekend!!

  • Do you know their e-mail address?

    Thanks

    Andy xx

  • Hiya

    If you want I will e-mail them my personal story about being dismissed from my job and how I`m hopefully taking my ex employers to a tribunal for discrimination and unfair dismissal

    Further to that I`m calling my lawyer tomorrow (Thurs) about it and I`m also gonna give BBC Look North TV a call too to keep em updated as I think they may run the story.....Watch this space!!!!

    Take care

    Andy xx

  • Hi Andy

    No, I don't know their email address, but I will ask for it. Since I made contact with them yesterday, there have been 3 posts about Parkinsons.

    The last one explained the problems with Parkinsons in some detail.

    Hope you get things sorted before too long. Will keep a watch for your story on Look North.

    I think your story would be of interest to Get Healthy so will give you their email address if and when I get it. By the way Pen1 is taking the reins from me as I have a few hectic weeks coming up with family.

    Good luck.

    Sue:-)

  • Hi Sue,

    I am disappointed a little that you won't be able to work on this as much as you seemed to wish too but I truly understand that your family commitments come first!!

    I am going to think about joining Pen1 but I am not sure how much we can do together since we are in completely different parts of the world!! LOL!! We could possibly duplicate projects!! Make it a contest to see who raises the most money!! LOL!!! We ALL WIN that way!!! :-)

    I am still going to do some of the ideas that were mentioned. Especially the raise change idea. I really liked that one because that doesn't take much time at all away from any one!! Just put up the collection jars or boxes and check on them once a week!! Hopefully people donate their loose change!!

    Kids here are always needing to do public service to write this down in their applications for collage. It looks good on their applications. We can give them the idea to raise money and awareness for PD!! Wouldn't that be great!! I think I might make a page on FaceBook too. My neice just made one about her passion which is eatting healthy... I would love for her to help me make one for awareness of PD!!! We could even encourage people to donate to several PD organizations. Michael's, APDA, National Parkinson's Fountation.

    Well I could go on and on....I wish you the best Sue with your new grandbaby and your family visiting with you. I hope you enjoy every minute!!

    I will look forward to your posts about all of it!!

    :-) Mary

  • Hi Mary.

    Please don't be disappointed with me. I am certainly not taking the easy way out and WILL continue the fight, just not as Organiser.

    However,the response from people offering to be involved in any way has been disappointing to say the least. A lot of great ideas, but no firm offers.

    If people do not come forward I do not want Pen1 to put her health at risk by trying to do this on her own.

    There is a very real possibility that this may not continue, at least in the UK. However, I will do whatever I can to support you. You are an inspiration to us all. I hope we can continue to be friends.

    Thanks for all your ideas and comments.

    Sue

  • Sue of course we can still continue to be friends!!! I hope I did not upset you or offend you when I said I was a little dissappointed!!! I only meant that I like talking to you and you made me happy that you want to do something to raise awarness!! I know you will continue to do what you can!!

    I'm sorry about the news that there aren't many folks getting involved. I have seen this very often here too. People are funny cause they want something done but when it comes to doing it they all want someone else to!! Everyone thinks there is supposed to be people who do those things. They don't seem to realise they are the people!! It is the people who are involved in the situation that have to make things happen. I know when someone is sick though how can anyone expect them to do something!! It is a crazy circle!! I think the family of those sick need to step up and do it!!

    Sue you take care and enjoy your new grandbaby and those other grandbabies!! They grow up too fast!! I hope you also enjoy your family on their visit to your home and the wedding anniversary coming up!!

    Mary :-)

  • Hi Mary

    Thanks for your good wishes and kind comments. As far as I am aware, no one has come forward to help Pen1 with Parkinsons awareness, and as she can't possibly manage on her own, it looks as if this is a no go. I suppose we could downscale but after the number of ideas put forward, I had hoped for a better response from the community.

    How are you getting on with things at your end? You have so many good ideas I only hope you get a better response then we did.

    Only wish my meds could be sorted out as I have so much I wish to do. As they say ... the spirit is willing, but the body is weak. Am not really looking forward to the next few weeks, just hope I can cope, but can't wait for the arrival of our first, and probably only grandson.

    Do take care of yourself and don't be tempted to overdo things. Your health must, and should, come first.

    Sue :-)

  • Hi

    Pen1 here.

    I hope that we can harness some of the energy and enthusiasm on this site and really get some action going on raising awareness of PD.

    It strikes me that we have two main ways forward. Local action and national action.

    Locally we can all work on our own projects and do as much as we can to get local media involved. Local radio stations are always keen to have material and interview people involved with ''interesting' projects. I am currently trying to get some 'fun' activities toegther that will show people a little of what it feels like to have PD. This will involve having a stall at local fetes etc where people are invited to strap sandbags to their legs and try to run, put on huge gardening gloves and then try to eat using a knife and fork etc. A particularly good one is to have an incredibily heavy suitcase and invite people to try and lift it. When their arm is shaking with the effort you explian that's what a tremor feels like. I know it's not exactly the same but it starts people thinking and asking questions. My own emphasis is on raising awareness rather than raising money but the second often will follow naturally from the first.

    National action is much more tricky. I would love to see a properly organised high profile campaign here in the UK. Recently there have been some excellent examples - various cancer charities, Alzheimer's, Heart Disease etc. Obviously a lot of thought needs to go into preceisely what the aims of such a campaign should be. Ideally TV exposure would be the way to go and the above charities have used advert slots rather than just one event on one programmed. It's expensive but not beyond the means of a national charity.

    We have a year before the next Parkinsons Awareness week so that's a decent amount of time to get planning. I'm sure there are masses of fantastic ideas out there. I think what is needed is some sort of Steering Group maybe to pitch a few ideas to Parkinsons UK.. It would be necessary to be very clear-headed about it.

    I'm not sure what I could contribute but I'd like to help. Ideally a few people with relevant professional backgrounds in PR would be very useful as part of a Steering group. If anyone interested in being part of such a group wanted to message me that would be a start and maybe I could put people in touch with each other?

    I have limited time available but let's see what happens!

    Pen1

  • Hi Pen1 :-)

    I sent an e-mail to "Get Healthy or Die Trying" hilighting my personal story of being laid off from my job because...as I firmly believe....of my having Parkinsons. I`m in conversation with an employment lawyer hoping I can take my ex employers to a tribunal for unfair dismissal and discrimination. Also I have been on conversation with BBC Look North who might run with my story, also BBC Radio Sheffield may run it too....Watch this space

    Anything else I can do just let me know

    Take care

    Andy :-)

  • further to my last post....I have also sent an e-mail to Advocacy for Patients with Chronic Ilness Inc and to the Michael J Fox Organisation.

    If anyone wants to see a copy of it I can e-mail it to you, if you message me on here I`ll give you my e-mail address.

    Andy :-)

  • HI ANDY I FOR ONE WOULD BE V INTERESTED TO READ THEM #

    MY EMAIL IS SHARON.BYSOUTH@GMAIL.COM

    LOVE SHA X

  • Hi Sha

    Its on its way :-)

    Andy xx

  • Hi, I am not on here that often though I read all the posts.

    I have followed Courts two blogs on raising awareness with interest. The idea of a walk is not a new one, though it has a lot of potential - in America they have a huge one in Central Park in April each year, and maybe be one also on the west coast (?) and I think there is also a large one in Sydney, Australia.

    I wonder if it would be a good idea to spread this idea and build on it, especially as people are connecting so well internationally. There are people here who have good experience with the Central Park event which is called the Parkinsons Unity Walk, and brings together many of the US organisations and patient groups, and draws thousands of people. Apart from raising awareness it also gives PwP a chance to catch up with each other and reconnect each year.

    Here in the UK perhaps such an event could be organised in somewhere like Regents Park, which also has a great bandstand, and maybe some of the great PD musicians and singers could help support it and make it a good event. In other countries this could also possibly be coordinated with the US and Australian events. They also raise a lot of money for research. The best bit is that it could bring us out in all our diversity! April is the month, so there is plenty of time.

    I have to add to this that there are many people who are already raising awareness of PD in s huge variety of ways, from climbing Kilimanjaro to long distance cycling. End to End is a cycling event in the UK, that has happened for several years, some amazing people. There are several PDers in the torch relay, also raising awareness. In the US look for the Davis Phinney Foundation for an inspirational person and organisation, one among so many. Cure Parkinsons Trust, of which this site is a part, has many supporters, lots of whom have PD themselves, currently raising money and awareness of the new promising GDNF trials.

    This kind of awareness raising has been happening for a long time, especially since the internet opened windows and doors and let some light in so that we could find each other. A lot of it has been in just a handful of countries though, and it is hoped that as we connect better globally we will be able to become a lot more visible.

    There are also lots of different ways to raise awareness, so there is room for different approaches, no matter where your skills and interests are.

    Getting involved like this can also be good medicine!

    Finally for those who do not know, and are either relatively close or do not mind travelling, there is the World Parkinson Congress in Montreal in 2013. The last congress was in Glasgow a couple of years ago, and it was unusual in that it welcomed patients, not just doctors and scientists etc. Everywhere patients played a big role, and were present at all the scientific sessions too, and it was great to see patients and doctors come together in question and answer discussions. People with PD came from around the world.... it really was inspiring.

    Court, hope this gives people inspiration to keep going, or even find out what is happening in their part of the world. There is already a lot of experience in the PD community which can be shared to help make things happen, so nobody has to start from absolute scratch to do this. Nearly all the best awareness raising has been done by PwP, and they all started like this...

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