We're looking for participants in a potential TV documentary about life with Parkinson's


#1

Hello,

Parkinson's UK are looking for participants in a potential TV documentary about life with Parkinson's that we're working on with the production company Flashing Lights Media. 

Are you maybe starting a new job, re-entering the dating game, or expecting a baby? Or have you recently been diagnosed with Parkinson's and are struggling with how to tell people?

If you’re interested in sharing your story please contact Camilla, the director of the project, at camilla@flashinglights.co.uk or 020 7269 2623

Thanks!
Alethea
Digital Team
 


#2

Obviously aimed at working, young, PWP. 

Life with Parkinsons after,10, 15 or 20 years would be more appropriate if this is to  increase awareness and raise funds for research or do you not want the general public to see the REAL   nature of P?


#3

I imagine the programme is to increase awareness ? If it isn't it needs to be . 

I think we need to see a varied group of people on this programme living with PD. That group should include people with juvenile onset ,young onset , middle aged ,elderly etc. Generally speaking most people seem to think that the elderly are the only group to suffer with it . Indeed someone said to me " you're a bit young for that aren't you " . My GP was astounded when I told him the youngest person in the UK has been a boy of 8. 

I would like to see pwp from all age groups from the newly diagnosed to the not so newly diagnosed and how they cope or not as the case may be with the challenges PD brings . The issues pwp face on a daily basis . 

I would like to see the positive stories as well as the negative ( obviously) . i know some people seem to fare better than others with this illness. I don't know how I will be myself but I remind myself that there are people on this forum who are living well with PD although it has been life changing . I have to or I would lose hope .


#4

Although any opportunity for us to get information about Parkinson's Disease across to the public is good, surely it is more important for them be introduced to all aspects of this illness so a better understanding of how many people in this country are suffering


#5

I am putting in for this,

 

BB xx


#6

Hello,

Thanks for sharing your thoughts on this. Flashing Lights Media are looking for people at key stages of life with Parkinson’s.

If you are interested in participating or have questions about the project, do contact Camilla on camilla@flashinglights.co.uk or 020 7269 2623


Thanks,
Alethea
Digital Team


#7

I have been in touch and have had a response from Camilla. 

Will keep you posted 


#8

Bethankit

It's great to hear that you've been in touch. It would be brilliant if someone from the forum could be one of the people who feature in the documentary. 

Ezinda


#9

Hi Ezinda & Bethankit

i have had a long chat with them if it goes ahead, I think they are quite interested in me.

we need to educate the public this is so important. Will keep you posted. 

 

BB x


#10

That's great news bettyblue. Please do keep us posted.

 

Ezinda


#11

Due to my work commitments I will be chatting to Camilla in a couple of  weeks. 

Bettyblue, are they looking for folk at all stages? 


#12

Yes Hun Lucy who I spoke to did not even realised it developed in stages, I explained how it all work's as 12345, I am stage 2.5. 

 

Let me know how you get it it would be great to meet you if we both do take part.

 

Take Care xx BB (Karen)


#13

I am lost for words

"did not even realise it developed in stages." Clueless comes to mind.

 

 


#14

Lots of Dr's don't like to give pwp to much info you have to ask you know saying you don't ask you don't get.

Sorry to be bearer of this news.

 

BB xx


#15

 

Sorry for butting in, but , who tells you what stage your at?, only i'm clueless too cos its the first mention i have heard of it?. & where do i read about it?.

thanking you kindly & looking forward too seeing something on the tv.

P.S the only info i got at diagnosis was, "here's a card, you'll find all the info you'll need here".


#16

This info is available via your PD specialist or your Neuro but again some are dubious of providing pwp with to much info. You can Google this just type stages of Parkinson.

Stage 1 Mild symptoms first appear, not generally bad enough to make you worry

Stage 2 established symptoms general dx

Stage 2.5 to 3 Midstage (no know way to predict how slow or quick pd will develop)

Stage 4 to 5 Advance pd 

Personally if Dr's are not informative if and when pwp or their loved ones ask I would ring help line of PUK 

and arrange to speak to PD nurse.

Hope this clarifies.

 

BB xx


#17

I have always been aware of the   stages. Just gobsmacked that PUK did not advise the programme makers of this OR that the  programme makers have not done adequate research. I repeat............clueless,  not me BTW!


#18

Sorry Benji,

Did not want my post to seem as thought I thought it was you who was unaware knowing others will read post I just thought i would do a general reply that is why it was not addressed hi benji.

I am so focused on getting the info out there maybe the tone of my words was a bit sharp, hope you accept my apology.

XX BB

 


#19

No need to apologise bb. My post was not aimed at your post on stages of P, but, more  worryingly that the programme makers had no idea that P  progressed in stages and that PUK had not advised them on this beforehand.

Hope you are selected for this venture and tell them, as it is after many years post diagnosis.

 

 


#20

http://www.parkinsons.org.uk/professionals/resources/professionals-qa-managing-stages-parkinsons

Don't worry I am well know for my straight talking nature Lucy who i spoke with knows exactly what they will get my nick name is feisty after all.

The above link is on the professional section of this Website not the most comfortable read I will say but anyone who want's info this answers quite a lot.

 

BB xx