Please add your voice to the Flash polls

[JonStamford]

One of the central strengths of patient led communities is their ability to tap into the patient voice. In many respects one of the greatest attractions of Parkinson's Movement (and one of the reasons I was proud to be a co-founder) is that we, the patients, speak for ourselves. Our voice is not paraphrased by healthcare workers, the pharmaceutical industry or academia. It is raw, honest and direct.

We don't speak FOR patients -- we ARE patients.

It goes without saying that the more people answer the flash poll questions, the more representative those answers will be of the community. Here at Health Unlocked, the Parkinson's Movement community is more than 4000 strong.

Wouldn't it be great if we could get a substantial part of this community to add their voice to the polls. After all, if you don't tell us what you think, we won't know what you think.

It's our community. It's our voice. Now let's be heard.

[beauxreflets]

Flash Poll 2 . Hi Jon,

The questions here are surely not very helpful to anyone, other than to determine some measure upon, 'how desperate and frustrated' patients may periodically feel as they struggle with PD.

Will it make me feel any better or more tempted to experiment; knowing others may be getting a high, possibly self harming and or breaking a Law ?

There must be quite a bit of data upon the damage or repair associated with using these type of drugs.

As a patient, all I would like to see is more information and openness in and from the medical and pharmacy arena..! Oh, and a cure coming out of the blue.

[JonStamford in reply to beauxreflets]

Hi Beauxreflets,

Thank you for your reply and directness.

I appreciate and understand your point of view on the polls, even if I don't necessarily agree with them. Certainly, desperation and frustration play a part in decision-making. I would be surprised if they were the only factor.

As for your question of whether you might be more inclined to experiment knowing that others may be getting high or breaking the law, I can't answer. Nor indeed do either of the polls so far mention getting a high. The emphasis has been on therapeutic value.

As for a cure -- you'll find no argument here!

Best regards,

Jon

[metacognito]

Either participate or stifle it. Other than the modest therapeutic benefits you may derive by venting, your cynicism serves no one.

[beauxreflets in reply to metacognito]

I have deleted my comment.

[fwes in reply to beauxreflets]

Your post was not deleted, and I for one enjoyed reading it. They are your thoughts, honest an well-expressed. No one has a right to bully you, intimidate you, or deny you your expression of your concerns.

[fwes in reply to metacognito]

metacognito

Your comment seems to follow a pattern:

1. Devoid of Content

2. Assume the right to dictate what others may write

3. Bully and intimidate

Theraputic is an interesting word. Should we read something into the regularity with which you direct your bullying and intimidation at women?

[metacognito in reply to fwes]

Really... I direct my "bullying" towards women?!? As one may note in your case, it's tough to tell from the name/photo what the sex of the person is. Prior to your present revelation, I thought my recent reply to your pedantic bloviations was to a guy (sorry missy)!

[fwes in reply to metacognito]

I do not recall your ever bullying me, just some who have written on my posts. For me it has always been childish name calling: "missy"? Is that intended to be derogatory?

Now, for your proclivity for non-sequitur responses. I have noticed that you have difficulty putting thoughts logically together. So, as in this case, you attempt to escape by a diversionary tactic. Is this intentional? See for example "Logical Fallacies and the Art of Debate" csun.edu/~dgw61315/fallacie... Or is there some sort of cognitive imparment? Perhaps if you dropped the bluster and tried to communicate, we could be more supportive.

As it stands now, all I see is your self-appointed role as thought-police, endeavouring to tell each of us what we may think or write. That must be quite a burden; there are so many of us and so many ways we can go astray.

[margie]

I enjoy the Flash Polls. It lets us know that we are not alone .

[Leilani23 in reply to margie]

I think the Flash Poll questions elicit useful information from us.

[minnietip]

I've had Parkinson's for about eight years I am taking one and a half five times a day I am sick all the time in the afternoon between two and sixmy stomach feels bloated like a balloon I can get anything down after 3 o'clock pill could it be the pills I can barely eat anything one to spoonful of makes me full and bloated

[Leilani23]

Hi, Jon,

I've just been part of this community for a few months. Could you please clarify for me what the "Parkinson's Movement" is? Is it another name for this online community?

Thanks a lot,

Leilani

[JonStamford in reply to Leilani23]

Take a look at parkinsonsmovement.com