Man With Down Syndrome Doing His Part to Find the Cure for Alzheimer’s | The Mighty

https://themighty.com/2016/11/man-with-down-syndrome-doing-his-part-to-find-the-cure-for-alzheimers/?utm_source=DownSyndrome_Page&utm_medium=Facebook

Article from the past – Georgia man to run across country to benefit Alzheimer’s research

https://www.ajc.com/news/local/georgia-man-run-across-country-benefit-alzheimer-research/EpXMbvgfIt3iT3WFPM8rVI/

I have never worked that hard before . . .

As a 64 year old, going up the 604 stairs at Amicalola Falls State Park would take me about 7 minutes.

One Saturday, at the bottom there was a man, maybe a little younger than me telling a lady he would walk to the top. She spoke against it and referenced the pain he felt in his knees and hips. He took the first step. His face backed up what she said . . . “pain,” maybe lots of it.

To make a long story short, he reached the top about 2 hours later.

I realized later that night that I had never tried as hard to do anything, as he did to climb those stairs . . .

I have friends that were born with different abilities and some that have suffered injuries, some that have gotten old, like me, but they do stuff anyway, no matter how long it takes . . .

World Down Syndrome Day . a day to think about inclusion and acceptance

Someone told me that people born with Down syndrome need help.

Thinking about that made me realize something.

Looking back over my life it’s easy to see that help, from others, has always been a necessity. It began with doctors and nurses on October 8th, 1950 and continues on to this day.

Parents, siblings, aunts, uncles, neighbors, friends, teachers, to name a few, have provided help to me.

I was ran over, had pneumonia four times, broke an arm, had chicken pox at age 37, was in ICU four days and anemic most of my life. Someone helped me through those times, and it was costly.

Then something else occurred to me. I sat and thought of the lives of several friends and saw the same requirement for help in their lives as was needed for mine.

If I was in the same situation as friends of mine that were asked if they wanted to abort their baby that would be born with Down syndrome, my answer would be what their answer was . . . “No”, and that answer would come quickly.

the Starfish story again

A young girl was walking along a beach upon which thousands of starfish had been washed up during a terrible storm. When she came to each starfish, she would pick it up, and throw it back into the ocean. People watched her with amusement.

She had been doing this for some time when a man approached her and said, “Little girl, why are you doing this? Look at this beach! You can’t save all these starfish. You can’t begin to make a difference!”

The girl seemed crushed, suddenly deflated. But after a few moments, she bent down, picked up another starfish, and hurled it as far as she could into the ocean. Then she looked up at the man and replied, “Well, I made a difference to that one!”

The old man looked at the girl inquisitively and thought about what she had done and said. Inspired, he joined the little girl in throwing starfish back into the sea. Soon others joined, and all the starfish were saved. Adapted from a story by Loren Eisley

Results of full time advocacy for the Alzheimer’s Association

Putting so much detail down here is a little uncomfortable, feels like boasting, but so many talented people made this happen, and it feels good acknowledging some of their work. One of the most important aspects of the Epic Journey Across America, the 3500 Miles in the Park, the Running/Driving trip and everything else done was for giving out of the helpline phone number for the Alzheimer’s Association. We did that at every opportunity.

Dad passing away with Alzheimer’s disease, my ICU stay, subsequent weight loss, and a few Goals later, Across the Land started. The official start date was January 12 2013 and the full-time part ended January 24th 2016. The mission was to raise awareness concerning alzheimer’s disease.

The full time Running, Jogging, Walking, driving and talking for Alzheimer’s lasted for a little over three years. Each meeting, visit and mile had a clear cut objective, raising awareness. These results are for the full time part of Across the Land.

The history is here so the Milestones will be remembered. Some of the numbers are precise, the ones that could not be, are estimated on the low side.

From January 12 2013 until January 24, 2016 I ran, jogged, walked, drove and talked to raise awareness concerning Alzheimer’s disease.

Here is some of what we accomplished.

  • over 14,000 miles on foot
  • over 25,000 miles in a car
  • in 16 states
  • over 50 television interviews
  • over 100 newspaper interviews
  • over 20 radio interviews
  • 6 magazine interviews
  • spent the night in over 40 senior care facilities
  • met hundreds of senior care facility professionals
  • gave out over 3000 cards and bracelets
  • 29 meet and greets
  • visited 4 research facilities
  • visited over 20 Alzheimer’s Association Chapters
  • met over 100 Alzheimer’s Association staff members
  • attended 9 Walk to End Alzheimer’s events
  • met 4 Governors, 2 Lt. Governors, 2 Secretary of States, 1 State Senator and 4 Mayors
  • met 5 world class runners, 1 professional football player and one actress
  • met over 4000 caregivers
  • over $40,000.00 raised for the Alzheimer’s Association
  • use social media . . . Facebook, WordPress, Twitter, Charity Miles and Instagram

– – – – – – – – – – – – – – – – – – – –

The Bobomobile is a 1996 Chevrolet Lumina

Wilson is a Bob Revolution SE Jogging Stroller. Wilson was out on the road with me for approximately 4000 miles.

Met John O. Agwunobi, MD, MBA, MPH served as the 12th Assistant Secretary for Health from December 17, 2005 to September 4, 2007.

Met Georgia’s Governor Nathan Deal.

Met Arkansas’s Governor Mike Beebe

Met Oklahoma’s Governor Mary Fallin

Met New Mexico’s Governor Susana Martinez

Met South Carolina Lt. Governor Nick Theodore

Met Arkansas Lt. Governor Mark Darr

Met Oklahoma Secretary of State Larry Parman

Met Arkansas Secretary of State Mark Martin

Met Oklahoma State Senator Brian Crain

Interviewed by Mariashriver.com and featured on their website.

Was invited to stand and be acknowledged in the Senate Chamber of the Great State of Oklahoma for raising awareness concerning alzheimers disease

Presented with the Arkansas Traveler by the Secretary of State Mark Martin

Met Steve W. Barger Ph.D at the University of Arkansas Medical School

Met Michael Zuwada Ph.D at the University of Arkansas Medical School

Met Sue S. Griffin Ph.D at the University of Arkansas Medical School

Met Jordan J.N.Tang Ph.D at the Oklahoma Medical Research Foundation

Met Huntington Potter Ph.D at the University of Colorado Denver

Presented with a proclamation from Mayor Richard J. Berry stating July 2, 2013 as Jack Fussell Alzheimer’s Awareness Day in Albuquerque, NM

Presented with the Points of Light Award for November 6, 2013. It was signed by Tracy Hoover, the President, Points of Light and signed by President George H.W. Bush, Honorary Chairman, Points of Light

Presented with a proclamation from Mayor Teresa Pike Tomlinson stating June 17th, 2015 as Jack Fussell Day in Columbus, GA.

Presented with the Key to the City of Tifton , GA by Mayor Jamie Cater.

Ran with Jordan Turner and his dad and met the men’s and women’s cross country team at Reinhardt University in Waleska, GA. Jordan is the coach. Some of the team ran with me also.

Ran with Jeff Turcotte and the cross country team from St. Pius High School in Albuquerque, NM

Ran with Jennifer and Derek Warren in Albuquerque NM

Received a formal invitation to tour St. Judes Children’s Research Hospital in Memphis, TN. I lost two cousins to leukemia years ago when the treatment was nothing like it is today.

Another very very special thing that happened were the invitations to visit over 60 senior care facilities. I was invited to rest at around 40 of those. What an honor that was for me. I never turned down even one invitation.

Here is a partial list of media coverage .

Mariashriver.com – internet news

HLN – CNN – Atlanta, GA

Health News Florida

Marietta Daily Journal – Marietta, Ga – newspaper

Cherokee Tribune – Canton, GA – newspaper (1)

Cherokee Tribune – Canton, GA – newspaper (2)

Georgia News Network – John Clark – radio (1)

Georgia News Network – John Clark – radio (2)

Georgia News Network – John Clark – radio (3)

Georgia News Network – John Clark – radio (4)

Georgia News Network – John Clark – radio (5)

The Walton Tribune – Loganville, GA – newspaper

Times Courier – Ellijay, GA – newspaper (1)

Times Courier – Ellijay, GA – newspaper (2)

Pickens County Progress – Jasper, GA – newspaper (1)

Pickens County Progress – Jasper, GA – newspaper (2)

My West Canton Monthly – Canton, GA – magazine

My East Canton Monthly – Canton, GA – magazine

Sixes Living – Canton, GA – magazine

Atlanta Best Self – Atlanta, GA – magazine

Atlanta Journal – Atlanta, GA – newspaper (1)

Atlanta Journal – Atlanta, GA – newspaper (2)

Fox 5 Road Warrior – Atlanta, GA – TV

DNR – Atlanta, GA – TV

WXIA – NBC – Atlanta, GA – TV (1)

WXIA – NBC – Atlanta, GA – TV (2)

Fox 5 – Fox – Atlanta, GA -TV

104.7 – the FISH – radio

Dawsonville News – Dawsonville, GA – newspaper

Living Healthy – Dawsonville, GA – magazine

WFXG – Fox – Augusta, GA – TV

The Tybee Times – Tybee Island, GA – newspaper

WJCL – Fox – Savannah, GA – TV (1)

WJCL – Fox – Savannah, GA – TV (2)

WTOC – CBS – Savannah, GA – TV

Statesboro Herald – Statesboro, GA – newspaper

WGXA – Fox – Macon, GA – TV

Macon Telegraph – Macon GA – newspaper (1)

Macon Telegraph – Macon GA – newspaper (2)

13WMAZ – CBS – Macon, GA – TV

Sirius-XM – Phlash Phelps Phunny Pharm – radio

Times Courier – Ellijay,GA – newspaper

Tifton Gazette – Tifton, GA – newspaper

WLTZ – NBC – Colombus, GA – TV

WRBL – CBS – Columbus, GA – TV

Walker County Messenger – newspaper

Daily Citizen News – Dalton, GA – newspaper

WBLJ – Dalton, GA – radio

WLAQ – Rome, GA – radio

CBS46 – CBS – Albany, GA – TV

WALB – ABC – Albany, GA – TV

Fox31 News – Albany, GA – TV

WJCL – ABC – Savannah GA – TV

Times Courier – Ellijay, GA – newspaper

Wade Caldwell Interview 1, 2 , 3 , & 4

North Jackson Progress – Stevenson, AL – newspaper

Hartselle Enquirer – Hartselle, AL – newspaper

The Moulton Advertiser – Moulton, Al – newspaper

Huntsville Times – Huntsville, Al – newspaper

WAFF – NBC – Huntsville, AL – TV

WHNT – CBS – Huntsville, AL – TV

WAAY – ABC – Huntsville, AL – TV

AL.Com – Huntsville, AL – web newspaper

ABC3340 – Birmingham, AL – TV

Daily Corinthian – Corinth, MS – newspaper

WLOV – Fox – Tupelo, MS – TV

WTVM – ABC – Memphis, TN – TV

WREG – CBS – Memphis, TN – TV

Fox 13 News – Fox – Memphis – TV

KWAM 990 – Memphis TN – radio

WMC5 – NBC Memphis, TN – TV

Memphis Flyer.com – Memphis TN – magazine

The Best Times – Memphis,TN – internet news

The Echo at UCA – Conway, AR – newspaper

Times Record – Fort Smith, AK – newspaper

Heritage High School News – Bentonville, AK – newspaper

University of Arkansas – Fayetteville, AK – TV

KUAF 91.3 – NPR – Fayetteville, AK – radio

KVOM – Morrilton, AK – radio

Times Herald – Forrest City, AR – newspaper

Times Courier – Forrest City – newspaper

Lonoke Democrat – Lonoke, AR – newspaper

University of Arkansas Medical School – Little Rock, AK – newspaper

Arkansas Democrat Gazette – Little Rockk

KTHV – CBS – Little Rock, AR – TV (1)

KTHV – CBS – Little Rock, AR – TV (2)

El Reno Tribune – El Reno, OK – newspaper

101.7 KKZU – Elk City, OK – radio (1)

101.7 KKZU – Elk City, OK – radio (2)

KWON – Bartlesville, OK – radio

KTUL – ABC – Tulsa, OK – TV

KUAF 91.3 – Tulsa, OK – radio

Tulsa World – Tulsa, OK – internet news

Community Spirit Magazine – Tulsa, OK

Choctaw Times – Tulsa, OK – newspaper

OU Daily.com – Norman, OK – university news

KFOR 4 – NBC – Oklahoma City, Oklahoma

KOKC – Oklahoma City – radio

Arkansas Technical College – Russellville – TV

The Canyon News – Canyon, TX – newspaper

Amarillo Globe News – Amarillo,TX – newspaper

KTRK – ABC – Houston, TX – TV

KAMR – NBC – Canyon, TX – TV

KV11 – ABC – Canyon, TX – TV

ABC7 – ABC – Amarillo, TX – TV

KKOC11 – NBC – Grand Junction, CO – TV

Big98.5 – Albuquerque – radio

KRQE – CBS – Albuquerque, NM – TV

Sequoyah Times – Sallisaw, Oklahoma – newspaper

News Herald – Lake Havasu, AR – newspaper

KCBA – Fox – Monterey, California – TV

GHCA.int – internet news

1080plus.com – internet news

Daynews.com – internet news

California.com – internet news

SWTimes.com – AK – internet news

River Valley Leader.com – internet news

The Salinas Californian – Salinas, CA – newspaper

Here is a partial list of the places visited.

These places take care of some of our seniors, and they are in no certain order. Most of these allowed me to spend the night in their facility.

  1. Arbor House Assisted Living – Mustang, Oklahoma
  2. Rainbow Assisted Living – Bristow, Oklahoma
  3. Green Tree Assisted Living – Sands Spring, Oklahoma
  4. CrestPark Nursing Home and Rehab – Forrest City, Arkansas
  5. Grandview Nursing Home – Jasper, Georgia
  6. Lake Havasu Nursing Center – Lake Havasu, Arizona
  7. Legacy Nursing Home and Rehab – Fort Smith, Arkansas
  8. Ozark Nursing Home – Ozark, Arkansas
  9. Lonoke Nursing and Rehab – Lonoke, Arkansas
  10. Wood Dale – Dalton, Georgia
  11. Palmilla Senior Living – Albuquerque, New Mexico
  12. Oklahoma Veterans Center – Clinton, Oklahoma
  13. Touchmark at Coffee Creek – Edmond, Oklahoma
  14. Epworth Villa – Oklahoma City, Oklahoma
  15. Prairie Winds – Oklahoma City, Oklahoma
  16. Easter Seals Adult Day Care – Oklahoma City, Oklahoma
  17. Lingenfelter Center for Alzheimer’s Care – Kingman, Arizona
  18. Cottages at Qual Creek – Amarillo, Texas
  19. Weatherford Assisted Living – Weatherford, Oklahoma
  20. The Point at Kirbyville Gate Assisted Living – Memphis, Tennessee
  21. Methodist Hospice Home – Memphis, Tennessee
  22. Gentilly Gardens – Statesboro, Georgia
  23. The Suites at Cypress Pond – Tifton, Georgia
  24. Southern Care Assisted Living – Tifton
  25. The Blair House – Macon, Georgia
  26. Culpepper Place – Fayetteville, Arkansas
  27. Prairie Winds – Oklahoma City, Oklahoma
  28. Summerhill a Senior Living Community – Perry, Georgia
  29. Legacy Heights Retirement Center – Van Buren, Arkansas
  30. Magnolia Gardens Assisted Living – Muskogee, Oklahoma
  31. Grace Living Center – El Reno, Oklahoma
  32. The Peaks – Flagstaff, Arizona
  33. Clarity Pointe – Knoxville, Tennessee
  34. Woodhaven Senior Living – Trenton, Georgia
  35. Brookridge Cove – Morrilton, Arkansas
  36. Willow Pond Senior Care – Statesboro, Georgia
  37. Sequoyah Manor – Sallisaw, Oklahoma
  38. Senior Star at Woodland Terrace – Tulsa, Oklahoma
  39. Senior Star at Burgandy Place – Tulsa, Oklahoma
  40. Roberta Health Care Center – Roberta, Georgia
  41. Eastview Nursing Home – Macon, Georgia
  42. Macon Rehabilitation and Healthcare
  43. Providence Health Care – Thomason, Georgia
  44. Carlyle Place – Macon, Georgia
  45. Flint River- Macon, Georgia
  46. SkyWest Assited Living – Canyon, Texas.
  47. Jan Wernersville Adult Day Care – Amarillo, Texas
  48. Benton House, Dublin, Georgia
  49. Antebellum Arlington Place – Macon, Georgia
  50. Taylor County Health and Rehabilitation- Butler, Georgia
  51. Gilmer Nursing Home – Ellijay, Georgia
  52. Ross Woods Adult Day Services – Dalton Georgia
  53. Cameron Hall – Ellijay, Georgia
  54. Country Cottage Assisted Living – Corinth, Mississippi
  55. Fox Ridge Assisted Living – Little Rock, Arkansas
  56. Sunrise Senior Living – Monterey, California
  57. Morningside Assisted Living – Decatur, Alabama
  58. Senior Community Services – Santa Rosa, New Mexico
  59. Dogwood Creek Assisted Living – Muskogee, Oklahoma
  60. Cedar Plantation Assisted Living – Metter, Georgia
  61. Outreach Alzheimer’s Center – Albany Georgia
  62. The Cottages of Camel – Carmel California
  63. Riverside Health and Rehabilitation – Thomaston Georgia
  64. Savannah Commons Retirement Community – Savannah Georgia

Walk to End Alzheimer’s events

  1. Statesboro, Georgia
  2. Statesboro, Georgia
  3. Atlanta, Georgia
  4. Blue Ridge, Georgia
  5. Jellico, Tennessee
  6. Rome, Georgia
  7. Dalton, Georgia
  8. Tifton, Georgia
  9. Albany, Georgia

Alzheimer’s Association Chapters

  1. Savannah, Georgia
  2. Macon, Georgia
  3. Tifton, Georgia
  4. Columbus, Georgia
  5. Atlanta, Georgia
  6. Dalton, Georgia
  7. Huntsville, Alabama
  8. Memphis, Tennessee
  9. Knoxville, Tennessee ●
  10. Little Rock, Arkansas
  11. Fayetteville, Arkansas
  12. Fort Smith, Arkansas
  13. Tulsa, Oklahoma
  14. Oklahoma City, Oklahoma
  15. Amarillo, Texas ●
  16. Albuquerque, New Mexico
  17. Pueblo, Colorado
  18. Colorado Springs, Colorado
  19. Denver, Colorado
  20. Grand Junction, Colorado
  21. Monterey, California

● Did not actually make it to this office, but met with staff there

Parks

  1. Skidaway Island State Park – Georgia
  2. George L. Smith State Park – Georgia
  3. Hard Labor Creek State Park – Georgia
  4. Amicalola Falls State Park – Georgia
  5. Fort Mountain State Park – Georgia
  6. Chickamauga National Military Park – Georgia
  7. Cloudland Canyon State Park – Georgia
  8. James H. Floyd State Park – Georgia
  9. Great Smoky Mountain National Park – Tennessee/North Carolina
  10. Greenleaf State Park – Braggs, Oklahoma
  11. Kasha – Katuwe Tent Rocks National Monument – New Mexico

Colleges and Universities

  1. Georgia Southern – Statesboro, Georgia
  2. Abraham Baldwin Agricultural College – Tifton, Georgia
  3. Kennesaw State University – Kennesaw, Georgia
  4. Reinhardt University – Waleska, Georgia
  5. The University of Alabama Huntsville – Huntsville, Alabama
  6. University of Memphis – Memphis, Tennessee
  7. University of Arkansas Community College – Morrilton, Arkansas
  8. Arkansas Tech University – Russellville, Arkansas
  9. University of Arkansas for Medical Sciences – Little Rock, Arkansas
  10. University of Arkansas – Fayetteville, Arkansas
  11. Hendrix College – Conway, Arkansas
  12. University of Central Arkansas – Conway, Arkansas
  13. Oklahoma State University – Tulsa, Oklahoma
  14. Oral Roberts University – Tulsa, Oklahoma
  15. University of Oklahoma – Norman, Oklahoma
  16. Redlands Community College – El Reno, Oklahoma
  17. Burrell College of Osteopathic Medicine – Las Cruces, New Mexico
  18. New Mexico State University – Las Cruces, New Mexico
  19. University of New Mexico – Albuquerque, New Mexico
  20. University of Colorado Anschutz Medical Campus – Aurora, Colorado
  21. West Texas A & M University – Canyon, Texas
  22. South Georgia College – Douglas, Georgia

States

  1. Georgia
  2. South Carolina
  3. North Carolina
  4. Alabama
  5. Mississippi
  6. Tennessee
  7. Arkansas
  8. Oklahoma
  9. Texas
  10. New Mexico
  11. Arizona
  12. California
  13. Nevada
  14. Utah
  15. Colorado
  16. Kansas

This project was a compilation of a lot of work from a lot of people.

Mistakes will be corrected as they are found.

Hope he had a good life . . .

I walk a lot here in Roberta, and noticed a man in a pickup often, always waved. He stopped, we chatted, he had cancer. He thanked me for caring. We didn’t even exchange names.

Recently I noticed he wasn’t around anymore. I described him and his truck to a neighbor. Bad news, he passed away.

Wow, this type stuff shocks me . . .

He was a nice guy. We never know when stuff may happen . . .

I hope he had a good life . . . I’m glad we talked . . .

my life now . . . it’s good

Most of my life now is spent keeping my ninety year old mom safe. To do the job responsibly takes twenty four hours a day, but family that lives near helps often.

Raising money and awareness for a couple of charities is squeezed into each day, using social media.

Another interest is my health of course. Eating food that’s good for me and exercise are both extremely important.

Alzheimer’s disease is widespread in my dad’s side of the family and he passed away with it at age seventy five.

Some of my time is spent learning how to possibly slow or stop Alzheimer’s disease.

Mine has been a great life that’s been enjoyable and hopefully there will be much more of it.

Blog about getting old? Why?

It sounds awful to me. Why blog about getting old? In the past I would have pictured a frail man with white hair, or no hair at all, bent over and maybe even needing a walker, but even that would be okay for me as long as I was doing my best to Keep Going.

Nothing set in stone here, in fact flexibility and spontaneity will be important as I work and work hard to Keep Going. My favorite quote may explain some of my ways . . .

“When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, ‘I used everything you gave me’ ” Erma Bombeck

A New Beginning . . .

Today is March 11, 2019 and it’s time for a fresh start with this blog.

My next birthday cake will have 69 candles on it. My hope is to remain active, both mentally and physically for many more years and this blog will serve as a record of my thoughts as I take this journey.