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Topic Spearheading a Quest for Information! Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.08.28 18:18
Interested? If so, I would be happy to compile suggestions, requests, etc...Here's the idea...

We ALL know that although there is a great deal of information out there, a great deal of it is technical and of little concrete use in our daily lives. Several of us have suggested that we need a course or class in what to expect, how to be prepared, etc..."taught" for lack of a better word by those of us at different stages (sorry for that word, Al) about this..

Are you willig to sit down and share either here or through email things you want/need to know, suggest resources that work, suggest daily and often mundane problems that come up and for which you weren't prepared?

I suggest that we do this, because after being here for sometime now, I FEEL the heartbreak and tension and the lack of answers to day to day questions. I also suggest we all read the final product, comment on it, and then sign. We cannot be anonymous posters and expect to get professional, well constructed responses if we aren't willing to put a voice to this.

Then, after the document/s are finalized, I suggest sending them to several organizations for THEM to make it happen...THEY have the money and staff, after all!...and to get action,..I don't know about the rest of you, but we donate to several PD foundations and it would be wonderful if some of that money funded the true interplay we need..and, I would include PWP, too...most are NOT given day to day the board here...confusion and sadness abound...

This board would be, and is, a great sounding board and needs to be a lifeline, too. But, how about all of us pulling together for a positive and much needed change?

Throwing it out there, and I am truly willing to work diligently on this, but need others' experiences..what do you say?

CAN this be done? You bet! One thing I have never mentioned...Fifteen years ago, I started an online reading experience called THE READ IN! Which started out one school to another online, for free. I worked hard and built it to over one million kids, started a non profit literacy foundation, and developed an online 12 hour event with authors like Judy Blume, RL Stine, Jack Prelutsky, Bruce Coville, and kids all over the world. All this while working fulltime as a computer tech for an elementary school. Why am I telling you this? People said I would not attract funding or support, but I did!I KNOW from experience that people WILL and DO listen to a well thought out idea. It can be done for PD caregivers and patients who need to be heard. The one thing I learned was that AYONE can have a good idea, but it takes SOMEONE to act on it!

Anyone interested? Let me know...WE want answers, let's get them! Jane

By parkinit On 2013.08.28 19:54
Yes! Good idea, Jane.

By dans316 On 2013.08.28 20:35

I wholeheartedly agree with the concept.

Hey I did put June's lipstick on before we went out for supper tonight, at least she approved, my triumph for the day:)


By makrivah On 2013.08.28 20:54
What a wonderful idea! I'll certainly contribute to the project.

By blue2 On 2013.08.28 21:24
I'm in!

By jcoff012 On 2013.08.28 22:46
Enjoying the enthusiasm!

Dan, that's great. To tell you the truth, I have never worn much makeup, so the fact that you put on lipstick makes me smile...and laugh...I can't do it myself! lol Jane :)

By sharonj On 2013.08.29 00:19
I think this is a wonderful idea! My PWP sister is having problems neither of us expected. Her neurologist, at her last visit with him, told her she would "be walking in 3 months." We hoped for this; instead, she has fallen several times and must use a walker to get around. She also has apathy about so many things now; this was totally unexpected and hard to deal with for me, on a personal level. So I support this idea whole-heartedly!

By mylove On 2013.08.29 00:26
I love it. And shout if you need more help. :)

By LOHENGR1N On 2013.08.29 01:01
I'm wondering if We're the number one site, why would we want to consult the number two or three? If we can make peace forgive each other and continue on as we have done before?

Just some problems I can see in asking other org's I asked the A.P.D.A. how come the cards they give out to carry in our wallets say Parkinson's Disease isn't fatal? They responded "We don'T want to worry Patients, it's scary enough to be diagnosed with it" . The NPF used to have a section titled How Parkinson's Disease Kills Us. For a few years now they haven't had it, they took it off their site. Parkinson's Disease is listed in the top 15 causes of death in the United States and our foundations and organizations won't tell us that or even seem to admit that to Us. At least We're honest here. We don't have medical companies and insurance companies writing big checks to support Us then telling us what to tone down or which procedures to push.

We can make lists and research, and learn the answers here ourselves, You, me, everyone. I'm not trying to rain on any idea We're all free to do what we want but to me when others are coming here because those org's aren't giving answers they need? That's just my two cents worth of opinion. Take care, best of luck and hang in there

By mylove On 2013.08.29 09:16
Because the most successful organizations realize that partnerships work better than solo efforts. When you work within a partnership, you realize that each member brings an entirely different skill set to the table. If you want to be successful, you utilize those members for their particular skill set and don't try to make them what they're not. No one group or person can possibly have all the answers. You pull from all of them, develop your product, and then use the partner with the best network to get your message out. I'm an outreach coordinator in 'real life'. I came from an organization prior to this that took the 'Lone Ranger' approach. Guess which one is more successful? Unfortunately to do it means setting old prejudices and the desire for insulation aside in pursuit of something larger. The question is, can we do it?

By jcoff012 On 2013.08.29 09:44
Al, please reread what I offer to do...I do NOT plan on consulting them...I am offering to compile OUR needs, and yours and other PWP and take the information TO them...TELL them what we NEED...not what they want to give us, but what we NEED...Sorry if I didn't make that clear...

I also said that in no way do I think this site should be on the back is needed and a valuable resource, too.

The information we would be presenting to PD groups would offer insights, would show needs, and hopefully would encourage them to understand that we won't go away, that PD isn't going away.

We all want a cure, but until then, they (doctors, foundations) need to man up and tell the facts about this disease. We need to get the information out that what they are doing ISN'T working for us...and they need to make change.

As I said, when I started my literacy idea, I had a LOT of people, including teachers, educators, and parents tell me it could NOT be done, teachers wouldn't buy in, I couldn't get funding, NO ONE has ever had salary funded...Well, I did...I had backing from Apple, Microsoft, RGK Foundation for two years' salary, an assistant's salary funded for two years, and signups from all 50 states and 15 countries...all with zero startup money and only a high school education. Result? I was named one of the Top 25 Technology People of the Future, on a list with Bill Gates; the project was honored with countless awards, NPR coverage...and on and on...Again, why say this? Because it worked and would still be working if I hadn't retired!

If there isn't enough interest, it will not come to pass. I certainly do NOT negate this me, it is a lifesaver and much needed...You KNOW how I feel about your contributions, Al...I just want us to be heard...perhaps drive people here for validation...wouldn't it be grand to have people KNOW to come here for frontline information? Think it over...Hugs, Jane

By jcoff012 On 2013.08.29 09:46
And, at 65, I certainly do not want to start up another organization...NOT my ALL! Just try to make change...let THEM make the changes...worth a try?

By LOHENGR1N On 2013.08.29 16:26
Okay Jane Got ya! Sure it's worth giving a try.

By jcoff012 On 2013.08.29 17:41
LOL...Phew! I figured you hadn't reread what I posted, yet! Thanks for thinking it over, Al..."What we had was a failure to communicate">>>lolol

I have had several letters (emails) asking very important questions, so before we go any further with this...Let me give you what I simply as I can...

First, I think we need to gather together as a group and present this documentation as a group, no "stars" ;) I certainly have had more than my 15 minutes of fame and have no desire to do so again...As I said, there needs to be one person as the information funnel/gatherer, and I will take that on while Carl and Nigel nap!

Secondly, we need to not be totally anonymous, but be willing to sign our names so that the forces that be will know we are serious and are REAL people. ***Note: even though we need to have identities, we NEVER need to give out personal information, including the name of our spouse/PWP. No one ever needs to give out an address, phone number, email...EVER...We need to tell our stories and experiences, but with anonymity.

Thirdly, as I stated...this is NOT a request for is a DEMAND for accountability. We are here, in this life and on this board because there is a need...We need to be heard!

Fourthly, we want this to be presented to a variety of sources, including news media, AMA, NIH, PD Foundations and Societies, etc...We no longer want to be responsible for doing all the research. We want to be able to help each other with the day to day caregiving/PWP, and that can be done here...HOWEVER, IF they listen and take up our suggestions, we WILL insist that this board was the beginning of this project and deserves to be recognized and given as a resource for daily struggles for both PWP and caregivers.

Fifth(ly?), (not sure about that! lol), we all must agree that healthy discussion is vital, but we cannot be mired in constant disagreement. The sooner we get moving on this, the faster someone just may listen.

And, I have learned from experience, the answers and assistance one needs rarely come quickly. When I applied for funding, I spent months in the public library and then the entire Thanksgiving holiday drafting 25 grant proposals, and only heard from six...and only had three funded...So, be prepared to be told "No" or "Not interested"'s part of life.

Lastly, we must agree that we don't work in a vacuum and we are not the resident PD experts. We just want answers to our questions...and we want some excellent dialogue with the powers that be. One thing that must be made clear is that Jim is responsible for this board and none of us would have met without him. He, too, needs to be kept in the loop of what we plan to do because if we are successful, it could easily mean a great deal more traffic to this site. A good thing, but he needs our support and thanks.**Jim: I had a Microsoft webmaster help create a website for me for the second READ IN! It was so successful that it attracted a Disney illustrator who redrew my Webster B(for Book) Worm and introduced me to others, who introduced me to Apple Execs, who sent me a laptop and desktop computer and $4,000 cash, helped train me to manage and create resources and pages for my website! It was a snowball effect and I didn't spend a dime...everything was donated and there were no restrictions placed on me or the project. So, I understand all you do and appreciate that you take the time to do this. Perhaps YOU have a behind the scenes story, too?? I know we would all be interested, if you are willing to share at some point.

So, please take a few days to digest all of this and if you all think it is a good idea after more discussion, I would be happy to start formulating some ideas for a draft...

One we want to use email instead of this website? If we opt for email discussion, we need to recognize that we need to occasionally update here, with Jim's permission. That's it for me...let me know here...Jane

I think I answered everyone's questions...except one...can I handle all the mail? That is almost it's Hey Day, I averaged 400-700 emails a day! lol Hugs

By Marilyn-NJ On 2013.08.30 11:49
I've read anything and everything I could get my hands on - including medical books. Interesting enough, the neurologist (a clinical doctor) would just shrug his shoulders with any questions I had. Experiences in the hospital (both ER and regular staff) were even worse. I am the caregiver, advocate and spouse - all the time. If they are fogged in about PD it's understandable that the general public is, as well....I was before it knocked on our door. Now I know when in's the PD.

What do we have to lose. If it raises awareness - it's about time. I'm in!

By gap2010 On 2013.09.03 14:10
I'm totally on board with this!! Let me know what I can do!!

By jcoff012 On 2013.09.03 16:25
Looks like I need to start formulating some ideas and questions! Thank you everyone! Due to an unforseen family emergency, I have to ask patience for a short time. This may involve travel to help our son through a difficult time. He seems much better than before this weekend, so I promise I will begin offering input asap. Hang in there...I guess first things first...

If you are interested, please send me an email with your email address and full name. I will start up a database...How about this, to start:

Login name on this board (will be confidential)
PWP name (will be confidential)
Are YOU the PWP or is he/she a spouse or relative * relationship
How long since dx
Approx. no, of years prior to dx
How dx (by family dr or neuro)
Does the PWP have tremors
If yes, location of tremors
Other symptoms
Negative reactions to meds
Positive reactions to meds

Simple statements here...we will go into more depth at a later time:

Did any medical personnel offer any training on what to expect with PD?

Did you ask for any training? If so, what were you told?

Any literature.or websites referrals?

if you visited these websites, did they offer good information?

Do you feel you need more assistance in living with PD? Such as better information, training?

List some questions you had that were never addressed,

Llist some questions you now understand that SHOULD be part of a training program.

Do you feel your insurance company understands and supports your struggles and daily life with PD?

Do you feel Medicare offers assistance?

More soon...that should get you started!

Remember, everything will be confidential. As I said, this is not for self gratification, but to help ALL of us get the training we need. Jane

My email is jane_coffey at comcast dot net

For those of you new to the board, I cannot list my email is of course @ and dot of course is a period

By jcoff012 On 2013.09.03 17:41
Part Two

First, if you have anything else you think should be asked, feel free to send them to me and I will be happy to include them. Secondly, I want to STRESS no one will ever have your personal information. I promise. Only when and if we include a few personal stories with our documentation will anyone's name be included, and ONLY with express permission...NO ONE will have any contact information, only I will and that's because of using email to disseminate information to the group.

Here goes...

This should have been included with the personal information...

Your age and your PWP age
Location: City, State, Country (do NOT include an address; no need)
NO phone numbers, please

Family history of the disease:
Relationship to PWP
At what age was the relative dx
At what age did the relative pass on, if so
Any relatives currently exhibiting PD signs or recently dx?

Here we go:

Does your dr/neuro answer your questions and spend as much time as necessary to fully explain all that is happening, the course of the disease/treatments? If not, what would you suggest would make the process better for you and the PWP?

Are you confident your PWP is getting the best care? If not, why not?

Do you understand what each med is? How it works? What is considered an overdose? When to call a doctor for help? When to head for the ER?

What was YOUR biggest surprise as a caregiver?

Daily, what is your most difficult task to face? Were you prepared to handle this?

Do you know WHERE to look for support? Were you given a list of places/organizations/websites/persons to go to for information on PD?

Is there support in your area? In your state?

Do you feel you are capable of handling any emergency? Do you know what to do? Where to go?

Do you know what is/isn't covered by your insurance? By Medicare? Do you understand/have insurance assistance with medications? Do you know if you must ask for/receive generics in order to be covered?

How far would you/your PWP travel to get the best care?

Have you had explained the difference between the care of the family physician, a neurologist, a movement disorder specialist?

Are you ever frustrated? Why? If so, it is because of lack of information offered at dx? Do you think you would feel more confident in the role of caregiver if you had training at dx, then even later as the disease progresses?

Do you understand that PD is chronic and exactly what that means? Are you ready to handle the daily chores and responsibilities of caregiving?

What is the worst part of being a caregiver?

Do you feel needed? Do you feel you are doing the best you can? Does anyone make you feel that you are needed and that your life has great purpose for your PWP?

Do you understand that should no one tell you, you are amazing and that you are doing the best you can with the information onhand? Would more information, even if that information saddens you, be appreciated? Would more information empower you and your PWP?

Were you expecting the changes and all that is happening in your lives? What information would have helped you face this journey?

Do you want more publicity about PD? With an aging population, do you feel that more information is better? Or, do you think there is sufficient information available, but you don't know where to turn?

Would you now, or would you at the first dx, attend a class or classes on PD?

What can anyone or any organization do to help you and your PWP lead a more fulfilling life?

What can anyone or any organization do to help you and your PWP face the future?

What rejuvenates you?

What do you do to ease the tension?

What resources would you like to see be offered to those dealing with PD?

....See? Told you all I have been drafting this and thinking about this since Carl's dx...I felt, and still do, at a loss for information...and, if WE have had PD in our family for 22+ years and still have questions, imagine others facing this alone.

One other question that needs answering...

How has this board been of value to you?

Jane ;) Next, I will sort through your email responses, add other questions you offer, and then see if we are in agreement with proceeding with the results of this query. No need to answer here. For those not participating, I will gladly update as warranted. As always, hugs! JC

By jcoff012 On 2013.09.04 12:20
Hi, All...let me catch my breath here! I just got back from getting Nigel and my daily walk...worn out...

I need to address a point that was brought up, and thank you for asking...

Confidentiality is EXTREMELY important here and in life. I will in NO way link your real name and your login name to any documentation that is distributed. It is for record keeping only...and, just in case someone or some organization should question the validity of the comments and needs we present, I would be quickly able to send you a note for clarification.

Trust me, if over 150 well known children's authors, frrom RL Stine to Judy Blume trust me with their information, and in ten years NO ONE, not even the Board Members of my foundation had access, NO ONE will have yours. I DO fully understand concerns, but all I really would ask is that we all be willing to document that we do indeed exist!

Again, NOTHING will leave my office without everyone involved's full understanding, having read the final product. Remember, we are simply gathering our personal information to show the need and our willingness to show that need to those who can DO something to help us and others.

Seems like a lot of information, but we need to show commonality and dedication to purpose. One voice is heard, but many heard as one is more powerful. Hugs, Jane

On a personal note, I seriously doubt if anyone's husband, PWP, could be MORE protective of his privacy than mine! ;)

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