Further to my question about raising the awareness of Parkinsons

Imbanni has suggested that we all arrange a walk on the same day. Read this reply for full details.

Would anyone be interested in trying to help pull this together? It would take a lot of organisation and may be impossible to do.

I am sure there are people in our community with the necessary skills to have a go at this. Unfortunately, I do not possess them.

35 Replies

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  • Do not let your ability to preform such a project but rather try. I am attempting such a walk on the 1st of September at Badlands National Park. I started planning about two months ago. It is thru Team Fox that I am planing it . I can guarantee of only ONE who will be there but I will not let that stop me. I am only one but I will not let that stop me I will concentrate one what I can do rather than what I cannot do

  • It is not the actual walk that I find daunting, but rather the co-ordinating with other countries. I think the idea is that all the walks should take place as near to the same time as possible. Need someone with good organisational skills to co-ordinate this.

  • Sue I think we could only do it on the same day but due to all the different time zones we could not do it at the same time. We need to contact all local PD organizations in our communities. I really think they would love to help co-ordinate also. Team Fox and National Parkinson Foundation are ones I think would really help. Have you looked at their web sites? They are always looking for ideas to raise awareness and and money.

  • I quite agree that it would not be possible to arrange anything for the same time, because of the different time zones.Unfortunately, I would not have a clue about arranging something on this scale. I know you have had some previous experience, but it would need contacts from other countries to stand a chance of working.

    I did not realise feelings ran so high when I posted this question. It seems a lot of people feel the same way. I know other Parkinsons sites give details of events taking place, but these are not seen by the majority of people.

    Am wondering whether to chain myself to some railings. Only joking!!

    It would be great if others could come up with ideas to raise the profile of Parkinsons. The more the merrier.

    Will get my thinking cap on.

    Sue

  • I have attended a couple of events like this now, and the problem as I see it is that the people who show up and participate are already educated and aware of what Parkinsons is and what it does to those who suffer with it. It appears that unlike cancer, people with Parkinsons and those who love them, are an encapsulated community unto themselves.

    Though the public observes the Parkinsons Walk, fund raiser etc, they are no closer to understanding the devastation of this disease...all they think of is a bunch of shaking people walking! I would love to see a television spot that shows how bad Parkinsons can be, and what a huge number of people are affected by it. Although Micheal J Fox has shed some light on the subject, most still view it as a disease of the old...and in our society, health care and research for the elderly are very low on the priority list.

    Maybe we need to publish a collection of pictures and stories of those who have developed PD...a Chicken Soup for the Parkie kind of book?

  • Sue, I agree that a walk is a good idea and an "inter-continental" walk would be most challenging, but I feel strongly that it should accomplish more than raising awareness, in people who are already aware, of the existence of PD. I believe the term is "Preaching to the choir". We need something to attract the attention of people who sit at home and watch the evening news. We need to let them know of our problems. I don't know if you have this problem in the UK and other countries but, in the U.S., we can't convince our doctors that people die from Parkinson's. People die from Cancer and from Alzheimer's, but a Parkie dies from "Pneumonia", which is just a term for the body shutting down.. The average citizen believes that PD is just an ailment that makes you shake..

    How about a walk in which each walker wears a T shirt on which is imprinted the name, and posssibly a picture, of a deceased PD victim, with date of death and "Died of Parkinson's Disease". That should make the evening news.. We also have a TV program, ("The Doctors") originating out of Los Angeles, which is hungry for interesting medical issues. They might consider us newsworthy.

    You asked for ideas!!!

  • Hi Ronn

    Did I open a can of worms? In the UK we have the same problems as you. Mention you have Parkinsons and the response is tepid to say the least. People are not unkind, just uneducated.

    I know that people die from Parkinsons, having had experience of this myself. In the end the body just shuts down, how can anyone say this is not caused by Parkinsons?

    I wish I had the expertise to get media attention, but surely somebody has. A programme shown on prime time TV would be great. Now I have got the ball rolling lets not let it get forgotten.

    Sue

  • AARP Convention is held every year. Maybe they would let the local PD organization purchase booth space and handout literature.

  • I completely agree with your comments. Parkinsons is viewed as a condition of the elderly - I never think of it as a disease - and a bunch of shaking elderly people are not important. If only the media and TV would get interested. A programme such as you suggested seems to be the way forward. There are a lot of famous people, some in this country, affected by this monster. It really gets to me how we are the forgotten people.

    I have found many answers to my questions on this site. Surely there is someone in our community with connections to the media? Or a publishing company?

  • National Parkinson's Foundation has an event called Moving Day. Could be a walk, swim, aerobics, yoga, dance, etc. There is a download for a handbook - might be informative.

  • Hi Court et al, On 1st and 2nd June, we are having open days in conjunction with our neighbours around our lakes and conservation woodland in order to raise funds for Parkinson's Research and Macmillan Nurses. An important part of these days is to educate the general public about Parkinson's in particular. I am hoping that I may have your permission to post up some of this dialogue for our visitors to read. Last year, we had well over 300, and this year, hopefully,weather being as kind, we will have a lot more. At the moment, we are busy making and freezing scones for cream teas, and cakes. It may be only a drop in the ocean, but, who knows, it could result in a "tsunami"!

  • There are a lot of people in The Uk who feel very strongly about the low profile PD has in the media. This came to light a few years ago when many members felt that Parkinsons UK missed a massive opportunity to raise the profile of PD when it 're-launched', changing its name from The Parkinsons Society to Parkinsons UK. Feelings ran very high and much was promised but in the end nothing was delivered. On the other hand PD UK directs a lot of money into funding research and has a good support network for PwP. I suppose it can't be all things to all people. This does, however, leave us in the UK with a bit of a void on the awareness raising front - particularly YOung Onset. Recent media exposure and campaigns by cancer charities, heart disease, Alzheimers etc have been very effective and it would be fantastic if something similar could happen for PD. I think we have to be very clear about the aim of such campaigns though - raising awareness requires a slightly different approach from raising money.

    I read with dismay one recent poster's comments that he'd entered a sponsored walk on behalf of PDUK and, unlike all the other charities represented, they hadn't even given him fliers, or any publicity material to hand out, let alone come along on the day to raise the profile. We've had similar problems in trying to work to raise awareness locally. I have never seen a collecting box, a leaflet about PD in my GPs waiting room, an 'ad'' in any paper. .All missed opportunities and not for want of trying - believe me, I've tried!.

    I always find myself in a dilemma when I read about walks/ marathons etc completed by PwP. I am deeply grateful to the brave souls who commit to such demanding undertakings; but on the other hand my PD means I can't walk - believe me I would if I could and have considered a mile 'crawl' (and been forbidden by my neurologist!). I have to admit that at times I feel the more physically demanding the tasks these noble people push themselves to complete, the more we are, in a strange way, encouraging people to think that PD is not as serious and limiting as many of us find it. I don't know the answer to that one .

    I think we need a big, organised media hit. Either local or national. Local would be easier for starters. I'm sticking my neck out here - and may live to regret it ! I have quite a few contacts here in the East Midlands/ S Yorkshire area. Is anyone out there interested in trying to get something off the ground?

  • hi my name is diane and i posted re the 10k with no support from pd uk. i have emailed to try and find out where to send the money raised to, i have offered to help at events to show that at 47 i have pd but am fortunate and can function almost normaly so far.

    i am thankful i found this site not long after being dxd in jan, i am still learning about pd and sometimes it scares me, i was told this was not fatal but from this site i have heard both the negative and the positive, i am with any campaign to higlight our condition. thankfully when i did take a turn as i discribe it i knew i would be ok as i had read it here, im lucky i have great friends and familly to give me a kick when i feel down.

  • How about finding a celebrity to do a telethon fundraiser.Something like Jerry Lewis did for MD.

  • I like the idea of the book! The other idea of a segment on TV is great too. Most people are too lazy to read unless it affects them. As someone said we already know about the disease, we need to make the rest of the people aware of it!! We have public awarness shows here in the US and they might do a segment on PD. Also some of our local channels do informative shows/talk shows,Great Day SA is one. Maybe they would be interested in bringing this out into the public's attention. I think the the show The Doctors is also national and that would be a great way to get information out on TV about PD.But how do we get in contact with any of them to ask them to air something like that?

  • This is where I am no help at all. I do not have any contacts in the media. Maybe someone in our community has some ideas, Any help would be appreciated, Please. There are a lot of good ideas we just need someone to co-ordinate them and ideas on how to put them into practice.

  • i have sent this email to one of our tv stations here in San Antonio, TX. Let's hope they respond! I copied my letter for all to see. ( I did not post all my info on this page for my privacy, thus the question marks)

    An idea for a story Wednesday May 16,2012

    View contact detailsTo: NewsTips@kens5.com

    Hello,

    My name is Mary ?????? and my husband is ???? ??????. He is suffering from Parkinson's Disease and has been now for 8 years. We have recently joined a support group on-line and have found that so many of us "Parkies" feel that the general public does not understand or are knowledgeable of Parkinson's. Most people say this is just what happens to some when they get "old". A lot of shaking and hard to walk is their explanation of the disease.

    We would like to make people aware of the fact that this disease does not only affect "old" people. So many young people in their 50's; as my husband; have suffered with this. The problem is there is so much more to Parkinson's than shaking! There are so many other things it affects. Problems with memory, speech, digestion, eyesight, balance, and almost all muscles are affected. It becomes very debilitating!! This disease also kills people!! We always hear that someone who dies of Parkinson's died of complications of Parkinson's. This is not the whole truth! Most people die from Pneumonia because the body starts to shut down and organs cannot function properly anymore.

    We hope to get awareness out there so that more people are understanding of how horrible of a disease this really is and that anyone can get this. When a young person in there 20's, 30's, 40's and 50's gets this disease they call it Early Onset Parkinson's Disease. They still do not know what causes Parkinson's nor is there a cure yet. Only medications to help ease the symptoms.

    We need more financial support for research to find a cure!! We hear so much about Alzheimer's and Cancer on the news and talk shows. We are hoping to get the same attention for Parkinson's.

    Would you please consider doing a segment on this subject? Thank you for your time and consideration.

    Sincerely,

    Mary ?????

  • Hi Mary

    What a really good letter. Hope it brings in a good response. You have explained things so well.

    Maybe we should do something along these lines in the UK.? I really admire your enthusiasm. Please stay in touch.

    Best wishes

    Sue

  • Hi Sue!

    Thank you so much!! I am praying that they answer me soon. I just feel soooooo strongly about this and want badly to DO something!!! I HAVE to do something!!! I feel I have no control over this horrible monster that has my husband's and my life in it's grasp!! I know I must trust my Lord that He has the control and only HIM!! But I HAVE to do something!!! If this does not work I will do something else and I hope you and the others will help to come up with more ideas!!!

  • Hi Mary

    I am away until after the weekend but one person in particular has shown interest in this and has more expertise than I have so she is leading the way with ideas and action. I am really glad she has more knowledge than I have and can't thank her enough for her help. I won't name her, but she knows who she is.

    I hope your husband gets some respite from this horrible monster which never manifests itself the same way in two people. It always seems to be one step ahead of me.

  • Thank you Sue for your well wishes for my husband! I am happy you have found someone who will help!! That's wonderful!!!

    Have a wonderful weekend!! :-)

    I hope the "monster" is not bad on you this weekend and you can enjoy it!!! May "it" sleep all weekend and leave you alone to live!!! :-)

  • Hi sue

    A great idea

    Lol Jill

    :-)

  • Brilliant letter, Imbanni. All the very best of success to you.

  • Thank you esrob!!! I am checking every hour to see if I get a response! I will post it no matter what the answer is so we can all share in the happiness or disappointment......Let's pray it's happiness!!! :-)

  • Hi Mary

    I am back from what should have been a refeshing weekend, but Parkies had other ideas.

    Have you had any reply yet after your wonderful letter? Why are these people not interested in promoting awareness? Maybe we all need to chain ourselves to railings. Only joking, although it worked for Mrs Pankhurst!!

    There have been a number of interesting suggestions, but we would need more offers of help to put them into practice I think I am a follower, maybe not a leader, but I am still in the race.

    Best Wishes

    Sue.

  • Imbaanni,

    'll be praying with you for a positive response. I think the public has too see what a day is like in the life of a PD person. Somebody on this site must have a connection with some TV network. Let's pray in agreement that they'll get involved too.

  • i am not good at organizing others, but am researching doing a podcast of light jazz once a week for two hours with music interspersed with psa type snippets on Parkinsons awareness issues. Will do a walk but can't organize it.

  • These are all wonderful ideas, but you will work yourself to death. You need a good committee and lots of volunteers. Oh yea and funding, If you are able to attend NPF Moving Day, it is a great event and you can learn a lot from them.

    There are so many ways to raise awareness, Imbanni has already started. If the TV station doesn't contact you, send it to the health reporter and editor of your local newspaper, i send it to all in a 50 mile radius, everybody has email now.

    Tulips are the floral symbol of Hope for PD, sell tulips, design a t-shirt, get local

    VIPs to participate in Dancin WIth The Stars fund raiser, a woman less pageant, Peanuts for PD, Pancakes for PD, Have a pie throwing, ask the mayor, chief of police, school principle, your boss to volunteer to take a pie for PD.

    It is our responsibility to make a change, See right there is an idea for a fundraiser, Make A Change, ask people for their spare change, you will be surprise how much you can collect,

    OK getting off my soap box or high horse pick as you wish ;o)

  • Hi Kaylee

    Please,please stay on our soapbox. How many good ideas you have. You are right about one thing, a lot of people are needed to put something like this into practice. Unfortunately, at the moment my off days are occurring more often than my on days. This changes day by day and am hoping to be back on form, whatever that is, before too long.

    You have obviously got a fund of wonderful ideas. Have you been involved in something along these lines in the past? I am a newcomer and do not have a clue where or how to start the ball rolling. Only that it needs to roll to get awareness raised.

    Please keep in touch and thanks again for your ideas.

    Best Wishes

    Sue

  • Hi Sue

    I use to have a live butterfly release in honor and memory of those touched by Parkinson's. It was breath taking. I did a walk for 7 yrs..the last one we released balloons (bio degradable, tied by hand. no clips or strings) It was awesome because you could see the balloons for a long time.

    We discussed trying to have a mass balloon release, having one or two people representing their state, getting people to attend, then releasing at a set time.

    Sorta like the domino affect across the nation every 10 minutes balloons go up.

    LOL my brain is in over drive.

  • Now that sounds very interesting. If we could tie in a balloon release on the same day in different countries, it would be awesome.

    My brain is in meltdown at the moment. Glad yours is in overdrive. You have so many ideas. All we need now are ORGANISERS AND HELPERS and we could have one event and more in the pipeline.

    Thanks

    Sue

  • Hi Kaylee, I think I may know you from elsewhere :-) If not, no problem.

    I posted on Courts additional thread about the many ways that people can get involved in advocacy wherever they are. I personally think something like the Unity walks would transfer well to places other than the US, and could link countries and even cities together, and within that there could be individual efforts as well as opportunties for media coverage, your description of the balloon and butterfly release reminded me that an event could be multilayered, and bring national groups together, as well as bring people who would like to get involved in advocacy together to learn and get to know each other....

  • I get regular posts from a site called Get Healthy or Die Trying. They cover a lot of health subjects. Today's was MS.

    I approached them to see if they could feature Parkinson's. They said they would and asked for some idea of what we wanted them to say. However, I have just been on Facebook to reply and they have already featured an article.

    If you would like to see the site just enter Get Healthy etc. on Facebook or Google them.

    Lets hope it is a case of large oaks from little acorns grow. At any rate it is a start. Help is needed to pursue many of the excellent ideas put forward. My organisational skills are not what they used to be.

    Sue

  • Hi Sue! Sorry you are having more off days than good.

    All the ideas Kaylee has are wonderful!!! I hope to do the one of collecting change for PD. I have two friends who have hair dressing shops and I am going to ask them if I can set up collection jars!!!

    I am soooo happy you got a response from Get Healthy Of Die Trying site!!! That is wonderful!!! You had better luck than I did. I have still not heard anything from my email. :-( I'm still hoping and praying. I will send another one if I don't get an answer this week.

    I hope some of the other folks on this site will start to do some of the ideas that have been mentioned!! We all can do something! If anyone can not due to "the monster" than maybe their families can!! We can always ask and maybe they will surprise us!! Maybe they want to do something and this just didn't cross their minds..... maybe it will be what they need to help them understand just how misunderstood this disease is and wake some of them up too!!!

  • Not to worry. Off days go with the territory, I will bounce back. So many people with so many good ideas but what really is needed is some help in pulling them altogether. A lot of people are needed in a lot of different places for any of these ideas to work. I think a sort of Committee would be great, but how do you get people interested? I am not a leader myself, only a follower and I just don't want all these good ideas to fall by the wayside.

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