I don’t want to in any way diminish the praise and admiration heaped on MJF this week for he has done more for the long term benefits for Parkinson’s Disease than any one individual perhaps ever has.

BUT we also have many here in this forum that has done equally admirable feats that have changed the way WE are coping with the disease today. Their personal wealth and public image will never allow them to accomplish what MJF has done but within their limitations have been equally significant.

Some examples:

Steve our Welcome Wagon persona extraordinaire. He has welcomed each individual to the forum and is always there to answer any question or offer a shoulder to anyone who has need.

Paula our Information Specialist. She always has the new news events posted before any of the rest of us has had our first cup of coffee.

CTenaLouise, Todd, Carolyn, and others - our Early Onset heroes. They have shown us that early onset PD is not as a stone wall as we feel when diagnosed and there is hope for a long future.

Paula, Carolyn, Joan our Political Activists. You have presented the political issues and informed us how we can make our voices known and heard.

Chasmo our DBS expert. Charlie has the knowledge and expertise to answer nearly any question about DBS and the ability to answer them in a way to give the information but not influence the asker of the question in their decision to have the surgery or not.

CTenaLouise, Todd, Rd42 our video producers and information distributors. They have produced videos and created wonderful web pages to disseminate our story

ZucchiniFlower, GodFather, olsen our Medical Experts. You have answered the technical questions that needed answers and presented scientific information that we would never have known or even known to ask.

Olsen, reverrett, BEMM our Alternative Medicines information experts. You have given us ideas to explore that many of us would have not taken the time to research or to even have considered.

Gayle, Jean our Involuntary Advocates. They didn’t turn down opportunities to get the information out when they had the chance.

Aftermathman, Textra, EnglishCountryDancer our Foreign Contributors. You show us that this is a world wide battle and that it is not confined to our little corner of our little town.

MikeTFF and all those needing information. You have bravely requested information that has answered questions for those who lurk or are not outgoing enough to publicly ask for advice.

Harley our Artist. You have shown us that our artistic abilities need not be hampered by our disease.

Pegleg, Ashley, Thelma, GregW, LindaH, Lindylanka, Boann, Ol’cs, Yam1, rosebud, burkle. I didn’t know where to put you precisely but you are invaluable assets to this board and in this fight that we have been put into.

I feel humbled when I think of what everyone on this forum is doing and that I have not been doing as much as I could and/or should. Thank you for being there for those who have needed advice and encouragement. You have made as big a difference in the SHORT run that Michael has done in the LONG run.

Thanks Dale! i really appreciate your words. I just walked in from trick or treating with a 3 yr old Batman and I have to admit it was fun - people sit outside and really get into it and are so friendly in the neighborhood where we went.

Much gratitude Dale......
Paula

Dale, thank you for bringing this to the forefront. While we all value and admire deeply people like MJF in our lives to provide us a voice and an image that we as individuals may not be able to do. It is also important to be reminded from time to time that the grassroots are far more important than the famous who do bring our "plight" to the public eye. Once that happens, on our behalf, it is then time for us to remember that it is the accumulation of the "small stuff" that makes the biggest difference.

For me personally, this is representation of advocacy:

The Wire Fence

The wires are holding hands around the holes;
To avoid breaking the ring, they hold tight the neighboring wrist,
And it's thus that with holes they make a fence.

There are lots of holes in my life.
There are some in the lives of my neighbors.
But if you wish, we shall hold hands,
We shall hold very tight,
And together we shall make a fine roll of fence.

We are those the wire. We make the fence. That fence is advocacy
The latter may be a single phone call. It may be standing in front of a national forum. But the fence is incredibly important.

We all have this strength within us, we just need to reach in and find it.

My advocacy contribution to our community is found in the background. I am not a spotlight kind of person. All I do is manage two PD websites.

(Also, see the words below in my signature.)

Dear Dale,

we did what we could do - because we all have one thing in common,
PD patients want a cure, so I continue to pray for this hope.
all the YOPA's thank you!

If I may add my 2 cents ... Carolyn says "all she does is manage two pd websites..." as if that is a small accomplishment!! She does a LOT of work behind the scenes to keep those sites up and running smoothly with current info.

Cheers!

Jean

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Thanks Dale!..There are some really extraordinary people in our community..And dont forget to include yourself..You have contributed a great deal also in your experiences with pd, and DBS, as well as your knowledge of the disease

Right On, Steve!

Thanks for all the kind words.

I have always been able to talk in public about the things I know about professionally but have been reluctant on talking about personal things. In February I went back to Nebraska to meet an old classmate and met a friend of hers who had recently been engaged to a man living within 50 miles of where I live. My friend came back with me to experience the Alaska winter and to attend the wedding of this friend. I became good friends of this couple and within three months of marriage he was diagnosed with terminal cancer. Three weeks ago she invited me out for Sunday dinner, along with many of their friends. I had been fortunate in not having to experience death up close. I was scared to go for fear of not knowing what to say or do but went anyway, What a blessing it was. Talk was easy and we all had a great time. He was not expected to make it through last week but is hanging in there although mostly unconscious. What I am attempting to say is I feel I can now talk much easier about my feelings so you may have to shut me up if I go overboard!!

Thanks, Dale. I am humbled. Did you know that 6 years ago I had experimental brain surgery? Yep, so you might say that I have put my heart and head into finding a cure!


lol

Peg

thanks, Dale, I am frequently reluctant to post , feeling I post too much stuff already. thanks for your affirming post. madelyn