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#1 npfcommunications

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Posted 15 June 2010 - 01:08 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?

2_What would you like to see more of on www.parkinson.org?

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?

5_What resources does your local chapter/community organization provide that you find the most valuable?

#2 shakti

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Posted 21 June 2010 - 11:25 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?
i found the website easier to navigate before you fixed it. its too, too, too. passwords should not be more than 9 digits.
2_What would you like to see more of on www.parkinson.org?
findings like zinc with copper and a group to test it out. same with qigong practices, dance, etc.
3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?
that i would still be hopeful about my own challenges being met, and that i wanted to find ways to help myself and others, that were natural ways, like zinc with copper for tremors.
4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?
i think the whole celebrity, big money, big names in science is a lot of baloney. so far, we are all not able to get rid of this thing called parkinson's . money just gets money for those who know how to get money.
5_What resources does your local chapter/community organization provide that you find the most valuable?

dance therapy

#3 jnoland

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Posted 24 June 2010 - 07:36 AM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? ***Yes*** ***The Forums***

2_What would you like to see more of on www.parkinson.org? ***Perhaps a "Common Drugs Used To Treat PD" Section, with either the PDR info or the manufacturers info for physicians listed for each and every drug - especially side effects and INTERACTIONS. Just a thought***

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? ***Not being able to move*** ***How bad it really is. They say a progressive neurodegenerative disease. What does that mean when you hear it? When you LIVE IT, then it hits home.***

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? ***I certainly think it helps.*** ***Someone who is a great communicator. It would not have to be a current celebrity. Someone who could do the job for at least 5 years - you know with PSA's all over the place. So many people think that PD is about shaking. They need to know the whole story. I'm not joking here, but a "Chalres Kuralt" type of person or someone who is taken seriously - say General Colin Powell.***

5_What resources does your local chapter/community organization provide that you find the most valuable? ***Unknown at this time. I'd have to investigate.***



#4 MShep

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Posted 02 August 2010 - 11:01 AM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? It is at times a little difficult. Good example, trying to answer these questions. Had to really "play around" to get to this page. New format seems good however.

2_What would you like to see more of on www.parkinson.org? Perhaps a little more of the psycological changes that most have due to the lack of understanding by those that do not have the disease.

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?
Ties into question #2 a little. Most do not understand how this disease effects us in so many ways they cannot understand. Frustration not being able to "keep up" because of the slowness I now have. Not being able to explain to others how I am feeling both inside and outside when they say, "you seem to be doing fine" and they do not see me when the med's are wearing off and I need a little help moving or getting out of a chair.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? There are so few celebs involved with Parkinsons, it is hard to say. I think the "think pink" breast cancer campaign could be a really good example of how we could attack and make a difference in our exposure. I was and am involved in rodeo, and very impressed with the fantastic support of that community with support from organizations, public, and private. I think lack of information to the general community is a major problem. People will help if they fully understand and know that we are just people like them, not a menace.

5_What resources does your local chapter/community organization provide that you find the most valuable? The APDA with the VA support group I belong to is FANTASTIC. Finding others with Parkinsons is sometimes a challange.



#5 Silverfoxx

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Posted 03 August 2010 - 07:54 AM

Do you want the forum to be better, more relavent?

To make the Open forum more useful than it presently is would be to open up ALL of the archived Open Forum topics. There was a tremendous amount of information shared from years past that would be relavent and valuable to the nenbers of today!
I have tried to follow the difficult instructions to get into the archives in the past, but they were just too difficult! Why not just create a "new" section of the Open Forum that would include ALL of the open gotum before the format change of a few years ago!

PD hasn't changed one bit, and neither have the patients with PD!
"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

#6 Stumbles Stephen

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Posted 04 September 2010 - 07:03 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?
Very easy to navigate, reading the forum helps me feel less isolated, I'm working hard to educate myself, this site is invaluable.

2_What would you like to see more of on www.parkinson.org?
I don't know yet.

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?
I went through 3-4 years of sickness, falling and pain. Missed so much work I was let go because I wasn't diagnosed with Parkinson's Plus so I couldn't prove anything to my employer at the time.
As it worked out this was a blessing. I didn't anticipate peoples reaction, it's like they are going to catch it, his is after I do my best to explain.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?
Very important. There is very few folks that know about it.

5_What resources does your local chapter/community organization provide that you find the most valuable?
Emory University Hospital Movement Disorder Clinic has been great! My wife attends a group there, that has helped her a lot.





#7 netgypsy

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Posted 16 September 2010 - 11:32 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?
It's OK although it says answers to the ask the doctor etc. are anonymous when they aren't any more.

2_What would you like to see more of on www.parkinson.org?

How about a guest columnist or two or three willing to answer questions. could be an expert or a person with PD or the one thing that is missing is a research expert in drug development in particular and in PD research in animals and biochemists researching PD

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?

the lack of predictability in daily life due to the erratic nature of the drugs - functioning well or not functioning as they should. The nasty side effects of the agonists that I thought were just PD progressing.


4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?

A celebrity who is living well with PD is extremely helpful. People like Michael J Fox and Janet Reno gave me confidence from the beginning that I could deal with this problem because they did and still are. They don't minimize the problems but they still live their lives and do the things they want to do. This is GREAT for PWP. Other than those two I have no suggestions but I'd avoid people like Mohammad Ali. Yes he's a great guy but I don't think of an ex boxer as typical of PWP.

5_What resources does your local chapter/community organization provide that you find the most valuable?

Have no idea. the internet is by far the best resource for PD



#8 Stargazer

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Posted 17 September 2010 - 10:57 PM

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? No I don't feel all of it is that easy. To communicate to friends on the board you have made it so hard to
use. Either be it private and simple or open and simple but it is tooo complicated I feel
2_What would you like to see more of on www.parkinson.org? more about the different meds and what is best & why.

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? I had no idea it hits all of your organs and brain waves to tell your muscles what to do. I did not think ones emotions would be touched and different on different days.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? I think it needs to be some one with compassion & understanding of the disease. I think to take a few hints from Breast cancer awareness certainly can't hurt us they have so many big companys behind them, they are in the big bucks with their backings and so therefore they will get more and better help.

5_What resources does your local chapter/community organization provide that you find the most valuable?
We truly have none period. I would love to get a chapter going but I think it needs a younger person but I would do all with in my ability to help and get it going. I believe in knowledge about the disease to make it less painful and devastating it is pitiful how the people are diagnosed then sent out of the door see you in such and such a time. Here in WA I would hope every Dr. would hand out the book H.o.p.e. written by Hal Newsom w/ Bill Bell as The Northwest Parkinson Org. Prime worker, Executive director honestly he just changed titles but a very great person.
He was my lifesaver I was devastated and with him talking to me for about an hour, it seemed, he made me feel so much more at ease and less frightened.

#9 StrkL

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Posted 20 November 2010 - 12:56 PM

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? Yes, easy to navigate. Ask the Doctor Forum was very helpful - it helped me discover I was undermedicated, and changing my dosage gave me my life back. See http://forum.parkins...-to-parkinsons/

2_What would you like to see more of on www.parkinson.org? More discussion of the importance of exercise, especially forced exercise. And not just mild or moderate exercise, but strenuous like weightlifting and running.

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? The tremendous positive effect exercise could have, at least for me. If I miss more than two or three days of exercise, my medication essentially doesn't work. With exercise (and medication), I have close to a normal life.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? Probably pretty important, but I'm not sure who would be a good face. John Ball is probably not really a celebrity, but he's a good face to me.

5_What resources does your local chapter/community organization provide that you find the most valuable? I don't know. I've found the internet - NPF forum and Patients Like Me - to be most helpful.
StrkL

#10 shakti

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Posted 21 November 2010 - 12:07 AM

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? Yes, easy to navigate. Ask the Doctor Forum was very helpful - it helped me discover I was undermedicated, and changing my dosage gave me my life back. See http://forum.parkins...-to-parkinsons/
i can navigate better ,now, than before. i guess it takes awhile. i find the open forum helpful. other people's sharing and suggestions are helpful and i find very considerate to others.
2_What would you like to see more of on www.parkinson.org? More discussion of the importance of exercise, especially forced exercise. And not just mild or moderate exercise, but strenuous like weightlifting and running.
i would like to hear more on qigong and tai chi. i get a lot out of qigong. i need it as a every day practise for balance, ability to walk more easily, hip and leg sockets mobility. peace of mind. it is a moving meditation.
3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? The tremendous positive effect exercise could have, at least for me. If I miss more than two or three days of exercise, my medication essentially doesn't work. With exercise (and medication), I have close to a normal life.
my own emotional reactions. my husband's loving and intelligent support and helpfulness.
4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? Probably pretty important, but I'm not sure who would be a good face. John Ball is probably not really a celebrity, but he's a good face to me.
i have no clue.
5_What resources does your local chapter/community organization provide that you find the most valuable? I don't know. I've found the internet - NPF forum and Patients Like Me - to be most helpful.

dance therapy class for pd. the internet. my neurologist.

#11 gazelle66

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Posted 24 November 2010 - 06:02 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? yes, pretty much. Though the pm is neither public nor private which is a bit disconcerting at times. I use the forums and the Nutrition sections the most

2_What would you like to see more of on www.parkinson.org? Definitely an expert in physio / exercise. A whole section devoted to this would be fantastic. I have just seen a video posted in the Doctor section of this site - a brilliant idea, so that people can demonstrate things that help

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? The mental strain of knowing what may happen. And the tiredness and general confusion that sometimes reigns.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? Hmm...I guess it wouldn't hurt, celebrity brings in money for sure. I'm from the UK so don't know so much. In terms of getting people to part with their money generally, I would like to see fit able bodied people demonstating the debilitating effects of parkinsons. If you saw a strong young (ish) man dumped into a vat of thick treacle and made to try and wade / swim through it, would you then understand as an able bodied person what it is like? I think you would. or better still a race - in the sea. They would all start off together and slowly the water round him thickens and he starts to struggle. He has to keep going because he can't go back. That's what I feel like! Just a thought.

5_What resources does your local chapter/community organization provide that you find the most valuable? I have no experience of this.


Edited by gazelle66, 24 November 2010 - 06:41 PM.


#12 PeterMid

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Posted 03 April 2011 - 08:31 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?

Quite easy to navigate but I'm not looking to go sailing! The profiling by individuals is interesting and 'Ask the Doctor' is of great help (although the response time could be a little quicker)

2_What would you like to see more of on www.parkinson.org

Interaction from Doctors, Specialists, PD nurses etc with members on the Open forum

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?

The 'other' symptoms that the majority of people do not realise is a major factor for Parkies........Paranoia, Depression and of course OCD's!

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?

Very important! Janet Reno maybe?

5_What resources does your local chapter/community organization provide that you find the most valuable?

Tea and biscuits and free 10 pin bowling .....lol


Failing to prepare is preparing to fail!

#13 stitcher

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Posted 17 May 2011 - 09:51 AM

Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful?

I do find NPF website easy to navigate. The redesign is wonderful and has a refreshing appearance.


2_What would you like to see more of on www.parkinson.org?

I reference list of recommended books written by PWPs; e.g. - Monkeys in the Middle; Life with a battery-operated brain


3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD?

I am many years from dx, so this is a tough one. I guess the degree of difficulty in finding and maintaining a relatively good quality of life; not impossible, but a daily challenge.


4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF?

I feel that it does bring light to a disease that is not well understood by the majority. I do though feel that we have PWPs, and I can name a short list, who are "celebrities" in their own right by way of the advocacy work that they do and they too should be held on this type of pedestal. I do realize that MJFox has done a good bit to shed light on PD, but I don't feel that his approach is enough. Yes, the world knows he has PD, but to what degree has he brought life with PD to the public, other than the novelty of the disease that the general population may see. In the beginning of his life with PD, once he came out, but now it is TV shows and such. I would like to see a "real life" PWP on Oprah, for example, and there are several who would be good candidates (I am NOT one of them.) /indent]

5_What resources does your local chapter/community organization provide that you find the most valuable?
[indent=1]My support group finds that general Q&A among themselves, with a group leader who has or can get the answers, is the most helpful and desirable to them.


Courage is the power to let go of the familiar. ~~Raymond Lindquist
Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.
~~William Ellery Channing
Grief is the agony of an instant, the indulgence of grief the blunder of a life.~~Benjamin Disraeli

#14 martybee_98

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Posted 06 August 2011 - 11:19 PM

1. it's as easy as any other site to navigate, I wonder if it could benefit from some serious "information architecture" study though, the liquid layout is too wide in some cases (like now when I'm typing)
2. being a NEW case, MORE INFO!
3. how much stress has contributed to the worsening of symptoms
4. I am with many others, you don't need celebrity endorsements as much as awareness and branding (in the old days we called it corporate identity)
5. haven't found any support groups at present, I believe the online support groups are the way to go these days

#15 Luthersfaith

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Posted 07 August 2011 - 05:37 PM

Please answer these 5 questions for NPF--your answers will help us make improvements to our communications:

1_Do you find the NPF website, www.parkinson.org, easy to navigate? Which parts of the site do you find most helpful? YES, VERY NICE

2_What would you like to see more of on www.parkinson.org? ???

3_If you have been diagnosed with PD, please tell us what the most unexpected aspect of the disease was for you? What did you not anticipate—even after reading up on PD? THE REALITY OF BEING VERY SICK, WHILE AT THE SAME TIME NOT LOOKING SICK MOST OF THE TIME.

4_How important is a celebrity endorsement in raising awareness of Parkinson’s? Do you think NPF would benefit from a celebrity endorsement? If so, who would be a good “face” for NPF? ???

5_What resources does your local chapter/community organization provide that you find the most valuable? ???


"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#16 Beau's Mom

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Posted 01 December 2011 - 09:06 AM

Amen to your answer to # 2.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.




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