Parkinson's Awareness ... really?


#1

I’ll try and keep it short … but this makes my blood boil:

Where oh where does Parkinson’s Awareness exist? … My employers have no knowledge, my co workers have no knowledge, my students (16+ yrs old) have no knowledge whatsoever (some have never heard of it!!!).

The last two year I have had to tell my employers about Parkinson’s Awareness month … and they did absolutely nothing about it. They have recently released details of ‘events/happenings’ for next year and, you guessed it … nothing about Parkinson’s again!!!

Now, when I watch TV, I can regularly see ‘adverts’ about Cancer, Strokes, Dementia, Mental Illness and and a few others but, why oh why is there no public awareness of what Parkinson’s is exactly …most people say that it’s ‘the shakes’ and if you don’t ‘shake’ then there’s no issue and it’s all under control :rage:

Why is there complete apathy about ‘our’ condition(s) and why does the public assume that it’s ‘just’ one symptom …awareness would make my life much easier.

In hope xxx


#2

It seems most people think of PD as a elderly person with trembling hands or a younger person like Michael J Fox who moves around a little funny. I have decoded it’s up to me to educate anyone who would like to listen. Most people have no idea how complex PD is and the life changing impact it has on the individual. It’s up to all of us to help draw attention to this neurological disease, even if it takes one person at a time. If you have a local support group they can help you by giving you educational materials or help with a local fundraiser.


#3

Perhaps one route into this problem would be for the Forum members to engage with Parkinsons UK on developing recommendations to the current Government Review of Social Care. Social Care is hopelessly inadequate as we all know and part of that is the widespread ignorance of the various conditions, including Parkinsons, that reduce people to absolute dependence on Social Care.


#4

@Hippy admittedly until my husband was diagnosed I only knew of the PD stereotypes. Imagine my surprise when not only was my husband diagnosed at 51, but I read about young people being diagnosed. Maybe it takes one of the soap operas to bring that into a storyline and start the conversation that way… until then we have to keep beating the PD awareness drum.


#5

Hi Hippy, Chris, Queenie & Ladybird - We at Hinckley Parkinsons UK group, acquired some literature from Parkinsons Uk to hand out at most of the functions we have, and we also asked at the GP surgeries in the area about putting up a poster about the disease, they took the poster from me but I have yet to see this particular one on display at the surgery, or any other surgery for that matter. So what problem have they got in displaying them for goodness sake - answers on a postcard!
Perhaps if you could contact the helpline they can steer you in the right direction for acquiring
some literature and see if you have a better response from your area GP surgeries, all the best

sheffy


#6

Hi Hippy,

I appreciate your frustration about the lack of awareness of Parkinson’s which is why we work hard to change people’s attitudes and perception of Parkinson’s. Hence our recent #UniteforParkinson’s campaign and why we are continuing to raise awareness through future campaigns.

To answer your question @Chris215, we do have a plan for engaging with members about the forthcoming green paper on social care. The difficulty we have is the timing of it – the government have pushed it the launch of it back so we’re waiting to see what the green paper says before we consult with members. We want to make sure we ask members the questions that the government are consulting on rather than asking random questions then have to go back to them.

I hope this information is helpful. :slightly_smiling_face:

Best wishes,
Reah


#7

Yes, helpful and encouraging, thank you.


#8

Thanks for all your views everyone, any publicity is good publicity but it still bugs me why there is no Parkinson’s ‘advert’ on national TV … it would help awareness and funding too, surely?

Hippy


#9

If it were made a storyline in one of the soaps as I think somebody else as suggested would go a long way. It’s certainly made a difference with other issues.


#10

Couldn’t agree more Wildrover … let’s hope.


#11

The lack of awareness around Parkinson’s is worrying. Here in Ireland Patients are lucky to see a neurologist twice a year at most, and only 17% are seen by a nurse who specialists in Parkinson’s

Martina Smith


#12

Here in England in the north west it’s only twice a year and you have about 10 minutes max.


#13

All sounding rather familiar to me. I’ve reached the point where I have almost accepted that I am doing all this alone … and I’m not knocking anyone in particular but the ‘medical help’ is almost beyond a joke. I have had that many changes of medication that I now have my own pharmacy almost … and I take whatever medication suits me at given times.
It seems to be a case of ‘there’s no cure so lets brush it under the carpet until we can announce a cure’


#14

Hi Hippy,

Yes I have come to the conclusion that PD is the poor relation when it comes to charities, research, funding etc. It’s outdone by the cancer and heart type charities. My cynical view on it is that:

1 In comparison to other conditions there are not a vast amount of people with the condition, although i believe its rising and 2 most people with PD are not of working age and for the government its not commercially viable. Hope I am wrong but nothing surprises me anymore.

I can remember in the 80s and 90s when there was a big stink about HIV/AIDS. They threw millions at it and today its nothing to fear


#15

Yes I believe the lack of funding has an awful lot to do with the lack of knowledge of PD getting out to everyone, and I am in complete agreement with you Wildrover over the situation in saying it is mostly those of a certain age it effects, so there is no importance or priority in research funding, but ‘they’ the government do not realise that more and more are being diagnosed with young onset of PD

sheffy


#16

When my husband was diagnosed he was told he needn’t see the Neurologist again but just go to his doctor when he felt the need to start taking medication so he has not had any further help or information from the medical profession. If they are not particularly interested in someone with Parkinson’s how can we expect anyone not affected by it to be interested.


#17

Thats astonishing, your neurologist needs to hang his head in shame. I can’t believe somebody in the medical profession would treat people like that…Can you not put some sort of complaint in. The average GP knows next to nothing about PD. In fact i dont think they are even authorised to prescribe Parkinsons medication


#18

K800mer, I too am absolutely more than disgusted as to what you have been told regarding the Neurologist, the GP’s know very little about PD and the medication! Contact the Helpline number to see if they can put you in touch with another Neurologist in your area, because if you do not have a Neurologist the I’m sure you will not be able to have access to a Parkinsons Nurse. The Moderation team will be able to point you in the right direction I’m sure and give you some advice.

My good wishes - sheffy


#19

Hi K800mer,

As Sheffy has suggested, the best thing would be to give the helpline a call on 0808 800 0303. They’ll be able to answer any questions you have, and can also try and help you find more support in your local area.

Best wishes,

Tom


#20

Words fail me k800mer … beyond shocking. :grimacing: