Topic: The National Lyme Disease Memorial Park Project...Update 12-19
Melanie Reber
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Dear friends,
With the passing of another victim...and the addition of his name as the 100th to a long list of names of those who succumbed to this dreadful illness...
I feel compelled to carry out Billy's wishes for a Memorial to all who have been taken too soon.
I would like to work on designing a place where the memories of those who have passed can be appreciated by those of us who remain.
If any of you would like to work on this project with me, please feel free to reply here, or to email me privately. PLEASE write ``Memorial'' in the subject line.
Thank you in advance, Melanie
[ 19. December 2006, 09:08 AM: Message edited by: Melanie Reber ]
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Somewhere, in storage, there is a Lyme memorial quilt, quite a lot of it, I heard several years ago. Not sure where it is. I could ask around if anyone is interested. Also, someone in CA was keeping a webpage for lyme fatalities. Don't think she is still doing this though
Guess we will have to remember and keep track of these people ourselves, since our wonderful CDC doesn't admit Lyme can kill people.
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Melanie Reber
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Good morning Lou,
yes, if you will, please ask around about the quilt.
Did you read Phyllis' comments on the other thread...not sure if the memorial page is still active, but it would be good to find out for sure.
I am going to start a website this weekend to get the ball rolling. I KNOW this is doable...it will just take time...but I feel we have wasted so much already.
Thank you for any help you can provide.
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Please read my post in the other thread of obituary listings. If there is going to be a national memorial we might consider planting the 7 Iowa trees there instead, but the challenge would be that family members would not likely be able to attend. I think that this has already been planned out so we'll have to see.
I think some kind of memorial is definitely in order and trees are the perfect metaphore to represent us.
Sadly, this could end up to be a forest.
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Melanie Reber
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Hello IMA,
I have added in Dorris. I'm so very sorry.
As far as the tree planting...I don't see why this can't be a state and national endeavor.
One echoing the other. This does effect families on a local and national level...so let the memorial represent that.
I am open to all ideas at this point. Thank you for adding your voice.
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posted
Sending you info by pm, melanie.
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trueblue
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quote:Originally posted by lou: Somewhere, in storage, there is a Lyme memorial quilt, quite a lot of it, I heard several years ago. Not sure where it is. I could ask around if anyone is interested.
Lou, I remember there was a quilt started somewhere around 93 or 94 supposedly on it's way to Washington. I'm not sure it was a memorial one at that time just squares to represent each person/family suffering.
It seems to me it could be incorporated if it's available, somehow.
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sizzled
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Maybe New H aven or Valha lla etc would be an appropriate site for the Lyme memorial garden? I suppose real estate there would be terribly expensive.
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Tincup
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What about in Old Lyme? I think Conneticut is a good idea too!
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trueblue
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up
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
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Dear Friends,
The LD memorial park project is well underway!
Here are few updates...
* We are at this time going through the process of establishing non-profit status and developing a Board of Directors (all LD patients)
* We are developing a website as an informational hub (friendly to LD patients)
* We are verifying the growing list of TBD fatalities, contacting families, and researching obituaries
* We have begun contacting state support group leaders to ask for additional names and state specific information
* We are researching appropriate site locations
* We are researching existing memorial proposals, site development issues, and design criteria
* We are developing our Mission Statement and Bylaws
* We are gathering ideas and brainstorming Facilities concepts
* And, we are developing the preliminary conceptual design
I am very excited about this project...and very pleased that Billy's family has embraced it. The design concept is slowly making its way from my head onto paper, and I hope to share that with you all very soon!
This will be an ongoing project; a living Memorial. My greatest wish would be for each of us to obtain a sense of ownership by participating in its developmental stages and in its continual growth.
If any of you are in the position to offer help with the researching, brainstorming, or any other suggestions...we are all ears! Also, I would like to take this opportunity to thank each of you who have already offered your help...it is appreciated beyond words.
Sincerely, Melanie Reber
``I too tend to plant trees in honor of those I love that pass away! Something symbolic to me about trees I guess, whether it be the trees branches reaching toward heaven, or just the growth year after year - signifying strength throughout all kinds of weather!'' - Billy Boesch�
"The roads are different, but the goal is one. When people reach the goal, all those who yelled at each other along the road, 'You are wrong!' or 'You are a blasphemer!' forget all possible differences. There, all hearts sing in unison." Rumi
(thanks lightfoot )
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posted
Thanks for getting this going Melanie. Count me in, I'd like to help. hatsnscarfs
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Melanie Reber
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Dear friends,
If you are looking for some way to help- these are areas in which we could use some additional research at the moment:
1. data collection- National we are needing data on all National TBDs reported. I will provide you the CDC tables and links for National info...you will need to extrapolate that into TBD data only.
2. data collection- State same as above
Please contact me with "memorial" in the subject line.
Thanks so much! Melanie
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bettyg
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Melanie, what is "extrapolate that into TBD data only." that leaves me out... don't understand the words used.
Melanie, great idea for your project, and I applaud you for taking it on with other lymies assistance.
Just remember my good online friend, Melanie, many of us are so sick, that user-friendly words are so much appreciated vs. technical terms.
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Melanie Reber
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Hello Betty,
Forgive me...by extrapolate, I mean to take existing general information and narrow that down to specific information...and then use educated estimates to come up with data.
For example...the CDC tables contain existing information for all reportable diseases...we need to narrow that down to only TBD (tick borne disease) information...and then use their own estimations of 10 fold the actual reported cases to derive a value more consistent to actual numbers.
*In the year 2004, the CDC claims that in the United States, there were 537 cases of Human granulocytic Ehrlichiosis reported. Now if we apply the 10 fold estimate...we come up with a more accurate number of 5,370 actual cases.
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Melanie Reber
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Also needed: someone who is profecient in Excel, who would be willing to import Word data, and set up reference tables.
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trueblue
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Melanie, If you send me a link to the CDC tables I can see if I'm any good at extrapolating.
I'm, for sure, good at multiplying by 10's.
I wouldn't know if I can do it without seeing what it entails but am more than willing to have a look.
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Tincup
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"..by extrapolate, I mean to take existing general information and narrow that down to specific information...and then use educated estimates to come up with data."
Is that kinda like picking tomatoes... tossing the bad ones to the pigs... putting the little ones aside to make sauces and jellies... and leaving the big, fat, juicy ones to slice and put on a sandwich?
Well... my dear Mountana.. I'm sorry. I can't help you right now. I just made myself hungry talking about those tomatoes.. so I'm going to go eat!
Basically sort of math stuff I see that you are needing. I KNOW we have folks here who can "do math". They have helped me in the past.
Anyone out there willing to assist with this request?
Melanie Reber
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Good morning all,
I would like to share with you what has been happening with the Memorial Park Project...and ask for your help.
We have been working on the website, and are currently trying to get it up and running within one month's time.
Realizing that this project is and will remain a work in progress...I am not focusing on a ``finished product''...but rather, my focus is on providing information that is available NOW concerning TBD associated fatalities.
With that in mind, I would like the site to open with...
* as accurate a list as possible on TBD associated fatalities * information on TBD associated fatalities via articles, links, etc. * state statistics including data on fatalities, TBDs and support * national statistics including data on fatalities, TBDs and support * educational and informational links on all TBDs * an inspirational page to offer hope of recovery and a sense of acceptance * an introduction to the proposed Memorial park, including the Conceptual design * a written description of the Park and an explanation of it's proposed Programming * and a description and information on the proposed Park Facility
What can you do to help? I am so glad you asked that question!
1. If you are aware of any TBD associated fatalities that are currently not on our list...now would be a great time to add them in. Please go here to post a reply:
2. If you would like to take on your state statistics, I would be thrilled to have your help! I will provide you with links, and all you will need to do is basically ``fill in the blanks'', contact a couple of local people to make sure they are still wanting to be a state contact, and make sure the listed Support group(s) is/are still active.
3. If your thing is research- * a compilation of links that point to TBD associated fatalities would be very helpful. * a compilation of educational materials including books, DVDs, brochures, pamphlets, etc. would be grand. * a compilation of inspirational links including short stories, poetry, etc. would add a very needed source of hope. * a compilation of vectors besides ticks with citations would be useful. * a compilation of types of ticks, where they are found and what they carry as far as TBDs would be amazing.
4. And if none of the above suits you, but you do have your own ideas of what you would like to see included on this site...by all means...lets hear it!
Please, let us know what you are working on so we do not duplicate efforts!
I thank each of you in advance for any and all help that you are willing to provide to us, and I also thank those who have already been working with us on the Memorial Park Project!
All my best, Melanie
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can help with the excel stuff experience with clinical research and data collection
have a few contacts with the ca dph live near a few medical field people who have children that have passed away let me know 2 mag
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posted
The LDA of Iowa had their tree memorial planting on Saturday. I regret not being able to attend.
Melanie,
Is there a specific frame of time you want these obituaries from? How far back are we going? Just curious if that matters.
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Melanie Reber
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Hello 2mag, Yes, it does seem as if your expertise would be most helpful. Would you mind emailing me, so we can come up with a plan for your input?
Thank you so much!
Hey Ima, I was just speaking with the Open Eye crew yesterday about that event. I too am sorry that you had to miss it; I know how much it meant to you. No, there are no specific time frames, so we can go back as far as this takes us!
Thank you for your continued help!
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Melanie Reber
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UP
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trueblue
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^up^
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bettyg
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quoting Melanie Reber:
What can you do to help? I am so glad you asked that question!
* a compilation of educational materials including books, DVDs, brochures, pamphlets, etc. would be grand. * a compilation of inspirational links including short stories, poetry, etc. would add a very needed source of hope.
what you would like to see included on this site...by all means...lets hear it!
I thank each of you in advance for any and all help that you are willing to provide to us, and I also thank those who have already been working with us on the Memorial Park Project! All my best, Melanie
Melanie,
I've done this work earlier:
. list of most current lyme books; . lyme/CO-INFECTIONS symptoms/dx/treatments for each; . detailed summary of ALL LDA brochures, etc.
1. Betty Gordon's LYME/TICK BROCHURE with LDA info plus other stuff from Betty including: lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
2. ``SYMPATHY'' POEM COLLECTION by Betty Gordon since this is a MEMORIAL site; sympathy poems will provide them comfort. There is a pet poem at the end of those poems I have up online...
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
]Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
DRUGS ASSOCIATED WITH LIGHT SENSITIVITY by Minoucat
Tincup posted March 8, 2005, Lyme Disease Survey Responses , FINAL RESULTS shown below! February 27, 2005 - March 9, 2005
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25 ********************
Tincup showed Pat Smith, the LDA PRESIDENT's email address, send her a note asking for 50 or 100 of their brochures:
Lyme Disease Asociation. That can be done by calling .. toll free.. 1-888366-6611 Or by [email protected]
TALKS ABOUT ALL CO-INFECTIONS, & about educational materials ... lists them all and the cost to buy each/quantity involved.
Materials include and $$ amounts you pay:
lymelight newsletter; tick wallet cards; poster guide to LD; everything you need to know about LD; LD what you should know 60 MIN. VIDEO; LD what you ahould know 30 min. VIDEO; community education slide show; what LD is .. prevention poster; faces of LD 27 min. VIDEO; LD & pets; many faces of LD book of stories of patient experiences;
comm. education programs: the works .. multi-piece display; comm. ed slide show;
KID/SCHOOLS LD facts for kids.. 4-18 min. videos; LD scientific investigator program, video, etc. LDwhat you should know 28 min. VIDEO school distribution program;
WORKPLACE ed programs 28 min.VIDEO
SCIENTIFIC/MEDICAL self-help program . 30 min. VIDEO satellite medican conference; 3 hr. VIDEO; journal of spirochetal & tickborne diseases; TB disorder packet LD scientific packet; LD chronic packet; conference compendium; LD scientific slide show;
IGENEX DIAGNOSTIC LAB has their blue LD brochure. I also asked for their CURRENT PRICE LIST to go with EACH of their brochures!
Discusses: hiw lyme is transmitted; if I suspect exposure; what are the symptoms; how is LD diagnosed; can ticks be tested; are there other TB diseass;
what tests are available: ELISA, WESTERN BLOT IGM/IGG, lyme dot blot assay, and PCR, polymerase chain reaction,
what test is best & names all; what is the treatment; can LD be prevented, & how to remove a tick.
www.igenex.com IGENEX, Inc. 797 San Antonia Road Palo Alto, CA 94303
Bettyg's recent LYME BROCHURE from LDA and Betty's addition of books, etc., and EDITED by Ann - Ohio. You could forward this to anyone you meet and online to family, friends, etc ... you've got the picture now, right?
I've had a table set up 3-4 times now, and was ready to write down anyone's EMAIL ADDRESS to send them the most recent info I had vs. something I had printed 100 copies of 3 months ago with some mistakes in it.
I hope this helps you/others who read this! Thanks for asking this important question!
Melanie, I'd like to see the above added to your memorial web site please. Thank you. Bettyg
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Melanie Reber
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Good morning Betty,
Thank you so much for your contributions to the information aspect for the Memorial website.
It is very much appreciated
Melanie
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bettyg
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Melanie, you are welcome for the project on behalf of ALL LYME patients who have lost their lives to this devastating disease!
Good job on what you outlined and what has been done to date. Bettyg
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trueblue
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Please take a look at Melanie's post a few up and see if there's something you can do to help.
Thank you!
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Melanie Reber
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Dear Friends,
As we grow nearer to the approximate launch date of The National Lyme Disease Memorial Park Project website...
it is with great enthusiasm that we would like to update you on what has been accomplished so far.
First, let me offer my most heartfelt gratitude to all who have been working so diligently toward this goal. I realize that this subject is difficult at best to spend time working on...but I also know that the importance of the overall project helps to ease some of that burden. I thank each one of you for your tireless efforts.
The website is coming together, and will consist of many pages; including, but not limited to:
* Information on the proposed Park * Information for each state * Our growing list of TBD associated fatalities * Fatality citations * Relevant Articles * Educational Links * A Physician dedication page * and other pertinent information
The Memorial website will remain a work in progress. We firmly believe that we are only scratching the surface of information available, so as new or newly uncovered information comes to light, it will be added in.
This `virtual' memorial in memory of our loved ones will continue growing with time much as the `actual' memorial will once it has broken ground.
I would like to devote the next few weeks to completing the conceptual drawings for the `actual' Memorial Park, but, I would like to include YOUR ideas in this phase as well.
Coming from the perspective of a TBD infected patient...there are many aspects of parks in general that I can no longer take advantage of. This saddens me of course, because it was a very integral part of my nature and my profession.
But, we do what we must to protect ourselves, and with time and healing, I hope to be able to enjoy the parks that I knew and loved once more.
Having said that, I am also aware that many thoughtful methods can be incorporated into the designing and building of landscapes. These methods will make parks safer for all those with not only TBDs, but with other limiting conditions.
It is my goal to incorporate as many methods as possible to make this Memorial Park a safe place for us all.
If you are willing to add your thoughts or suggestions as to what would make a `safe' landscape for YOU, please feel free to share those ideas here! I will try to utilize as many as possible to create a place that we all will feel comfortable spending time in.
Do not be afraid to think outside of the box! The more creative the better! Also, feel free to list the obvious! Sometimes, the obvious is one of the best solutions.
We thank you in advance...
My best, Melanie
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bettyg
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Thanks Melanie for the nice, detailed update on our project which you've been working so hard on!
1. Will there be any photos of lyme victims who have passed? I know their obituaries will be there. An after thought...
2. Please get all DEER RESISTANT flowers/plants so they do NOT come into the park to eat. Lists are available from any master gardener, etc.
3. Having some type of WATER garden where you hear the soothing water and can relax. Perhaps a MASTER GARDENER would take on this project where they have to do so many hours yearly on COMMUNITY INVOLVEMENT projects/education!
4. Will the names be on bricks, etc. and placed WHERE ....on a WALL ?
Local veterans are building a memorial, and they were going to put bricks on ground to step on. NO, will be placed on a wall now was the last I heard...people were upset to STEP ON LOVED ONES gone due to the war.
That's what came to mind when I read your update now; perhaps more later. Bettyg
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trueblue
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Melanie ~ I thought I'd start by stating the obvious.
For me the thing that is most challenging is being able to walk and stand long enough to see and take in what I came for.
So, Lots and lots of places to sit! Both for introspection and for resting. Everything fully disabled/handicapped (not sure the proper term right now) accessable The possibility of using, borrowing or renting scooters or wheelchairs for those that can not walk or not very far.
(That last is unless you want to have a little train. )
I don't know how to make no bugs but I would like to sit in the grass under trees.
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bettyg
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l. Also, all paths be cement so wheelchairs, etc. can have a SMOOTH SURFACE vs. trying to over those large pepple surfaces, etc.
2. Where there are benches, a large umbrella over it for us SUPER SENSITIVE TO LIGHT lyme patients! BG
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Melanie Reber
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Hey Betty, Yes, most definitely...there will be NO deer allowed in this park! Deer fencing will be incorporated. Having gardened myself in deer country, I know what plants are less desirable to their tastes, but I also know that when hungry enough, they will eat most anything. But, hopefully, we will not have to worry about that issue at our park
Yes, water is an integral part of the overall design. Not only to irrigate the trees, but to add life to the park by incorporating fountains, pools, cascades, rills, amelioration, etc. The sound of water is most soothing, and I don't know about you, but I can never resist the draw of the sound and the spray.
No, there will be no walking upon named bricks. Signage design is still being worked out, but we may incorporate `Memorial Park Project Member' tiles within the facility.
Yes, the pathways will be wide and smooth. I love textured stone, but recently had an epiphany when I visited Trails in the hospital, and we tried to roll her in a wheelchair over a brick surface...NOT good!
I too am on meds where I can not be in the sun. I sure miss it terribly, but that is our reality for many. There will be plenty of covered areas for walking and seating, and I think `loaner' umbrellas at the entry would also be a great idea.
Thank you for all the thoughtful suggestions!
Hey Bluebird, Yes, stamina is a big issue for many...I know it is for me right now anyway. For those less ambulatory, I think `loaner' red shiny scooters would be great. That way, you would not be stuck on a shuttle or trolley and would be able to pause as you liked.
Yes, everything will be completely ADA regulatory accessible. (red shiny scooters should have priority with a fast lane, don't you think:)
Yes, the bug issue is a real challenge. Deer are not the only host reservoirs for TBD carrying vectors. it would be impossible to keep the birds out, or the squirrels, or the mice, etc...but we will do our very best to eliminate what draws them in, and to try to keep them at bay.
I was thinking a small brood of guinea fowl could roam the grounds each morning to much away I miss sitting on the grass as well, and I don't know how to fix that issue. I suppose a good application of seven would help if applied consistently. But who wants to roll around in chemicals? Not me.
I have a few ideas but they haven't been researched enough yet. Sooo much left to do! As always, thank you for your insights!
***
Anyone else???
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Melanie Reber
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Good morning All,
I am bringing this post back up to let you know the launch date is approaching! Finally!
We are set for a New Year launch which will be in conjunction with an article coming out in The Public Health Alert.
We have been working diligently on trying to gather all information possible relating to associated TBD fatalities...
So, if you have been holding back, or are just now finding out about this Project...please feel free to contact me or post here.
Again, my most sincere thanks go to those who have been helping in many ways- I could NOT have done this alone.
I applaud your dedication and willingness to work on such an important, yet sobering, project with me.
All my best, Melanie
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bettyg
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melanie, thanks so much for the wonderful update that things will be happening soon with your big project! can't wait to read about it in the public health alert paper.
thanks for ALL you have done on this project with all the behind the scenes happenings going on for you/family! it kept your mind occupied, but the heart still hurts and grieves for your grandma, etc. who have passed on!
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Melanie -- thank you for your work on this tribute. I went to a cemetary recently. I had the privilege of witnessing a small wall dedicated to a young man, maybe 21 years old, with his picture, and memorabilia from his life. It gave me more of a sense of who he was, vs just a name to read. I think it would be cool to create personalized memorials. With a picture, and something about the person.
I for one really resent this disease taking me over, when I've always been someone else to myself, my family and others who've known me. I'd want some kind of a statement about who we are apart from this disease, as in this is who the disease has taken.
And it wouldn't take so many people (and animals)if there was better publicity about it and more respect given to the need to diagnose and treat, and figure out how to prevent.
[ 22. December 2006, 02:00 AM: Message edited by: Robin123 ]
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Melanie Reber
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Thanks so much Betty,
Yes, life has been anything but boring for me recently, but things are beginning to get settled one by one, and I am grateful that the Memorial Project has come together as well as it has thus far.
It will remain a work in progress, but most of what we were after is well documented now. We will just continue to search for additions to the information aspect and sadly, to the fatality list.
I actually just heard from an old friend this evening telling me of the news of her son's death to LD...so very sad.
I have always believed that information is power, and hopefully with the amount of information that we have now gathered in one place, NO ONE will be able to deny the seriousness of TBD associated fatalities ever again.
That was my goal, and I pray that Billy somehow knows that his wishes are now coming to fruition.
Hello Robin,
You are most welcome, and I surely can not claim to have accomplished ANY of this by myself! We have gathered many who have put their hearts into this and for them, I am so very grateful.
Yes, I do know what you mean by wanting a more personal tribute to those who have succumbed...they were so much more than the diseases. The Memorial site has an Additional Information page with condensed obituaries that speak to who these people were and what they did.
In the future, at the actual memorial Park, I hope to also have places set aside that celebrate their lives, instead of only mourning their deaths.
Thank you for your input.
Posts: 7052 | From Colorado | Registered: Mar 2003
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bettyg
Unregistered
posted
melanie, i meant to ask; was it you or who created the long list of names on that long roll we saw photos of on the hill for the protest recently?
it was impressive; touching of those who once walked in our shoes without success. thanks!
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Betty,
The long list of fatalities was taken from the Memorial site...unfortunately, that list has grown since then.
Tincup took the list and had the scroll made for the rally. She knew that I really wanted to be there, but could not.
So she took my heart and all the names of the others who were not able to go with her.
It was a very powerful statement, and I am so grateful that she made the time and found the extra energy to make it happen for all of us.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Also, I would like to take this opportunity to thank each of you who have already offered your help...it is appreciated beyond words.
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