In memory of our PSP / CBD Angels ...


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a PSP angel

Postby jturosky » Wed Sep 19, 2007 9:38 am

Nov. 26, 2005, Jack, father of Janice, (jturosky)
jturosky
 
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add angel to the list

Postby CalamityJane » Tue Sep 25, 2007 3:10 pm

Hi everyone,

I am new to the psp forum, but Im all to familiar with psp.
We lost my father Richard on June 28, 2007 to psp. He, along with others was mis diagnosed and was treated with all sorts of heavy medication, he was locked in a behavioral unit, and suffered until his passing. His passing however, was the most peaceful ive ever witnessed We rejoyce that he is no longer suffering, and is able to run and fish again. He is with the lord and is smiling again.
I keep praying that someday they will find the correct treatments or even a cure, and the medical workers become more familiar with this disease, and more known of it.

Its nice to be a part of this forum. :D

Janee
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Another Angel

Postby Tiaqueen2 » Wed Sep 26, 2007 3:05 pm

Hello From Brazoria,

I would like to add my dear Mom's name to the list of Angels returning home. Mom left us on August 29, 2007 while at Houston Hospice. She was officially diagnosed January 2007, but had it for at least 8 years. My mom Renee G. Hernandez was a Wife and mother of Carmela, Angela and Janett and grandmother of Rachel & Dylan. We miss her terribly but know she is now with Daddy and they are dancing the Meringue!

Thank you and God Bless.
Tia Queen
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Another Angel

Postby sareichardt » Wed Oct 24, 2007 10:02 am

My husband, Dennis Reichardt, passed away from PSP on August 31, 2007.He was diagnosed in 2002 but had symptoms two years prior to that. He was 64 when he passed. Dennis was father to Randylin and Reid and grandfather to Sydney and Tyra.
Sharon Reichardt
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Postby cinlo » Mon Dec 17, 2007 9:12 pm

Dec. 16, 2007 Darlene Lyman, mother of Cindi Carter, Ric Lyman and Robert Lyman. Diagnosed Feb. 2004, but with symptoms several years earlier.
Cindi, daughter of Darlene
PSP symptoms since about 2001, diagnosed 2/2004, finally free of PSP 12/16/2007
cinlo
 
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Postby momppsp » Sat Jan 12, 2008 7:21 pm

Please add my beautiful mother,

Marie, mother of Deborah (momppsp)
diagnosed June 2004
passed January 10, 2008
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
momppsp
 
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Postby Regena » Sun Jan 20, 2008 10:05 pm

Having a PSP Wall is a terrific idea! I am in agreement with an earlier post - for this to be considered a rare disease, the list of these beautiful loved ones seems long. Does anyone know of some statistics concerning PSP? I read somewhere men are more apt to have PSP than women. Why?
Regena
Mom age 73 diagnosed wPSP Sept. 2007
Regena
 
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Postby daddysgirl » Tue Jan 22, 2008 10:06 am

Regena ...

Just out of curiousity, I counted the names on our wall to see how many were men versus women. It's way to close for it to appear that the disease affects more men than women.

From those that are on the List of PSP Angels, 53 are men and 51 are women.

So, it would appear that the bastard PSP hits both genders equally as hard :cry:
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
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Postby Regena » Tue Jan 22, 2008 2:00 pm

Laura,

Thanks for replying. I did not even think to count the names on the wall. I agree, it is too early to see that more men than women are tagged with this horrible disease; but I think I read this info in a book I have "The Official Patient's Sourcebook on Progressive Supranuclear Palsy." It is so frustrating that no more information is known about PSP. Thank God for you guys and this wonderful support received from this website!!!! God bless!!!!
Regena
Mom age 73 diagnosed wPSP Sept. 2007
Regena
 
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Postby eplowman » Tue Jan 22, 2008 3:59 pm

Regena,

I've seen the same info as you re. a small tilt toward males for developing PSP. Some of the online research suggests the numbers for PSP are about equal for males and females.

But no one really knows, and there is almost no way to gain reliable stats.

If the present incidence percentage rate is true -- that 6 people out of 100,000 have PSP -- then that translates to 18,000 out of the U.S. population of 300 million. (No way to verify that estimate, either.) Only a very small number of these PwPSP are represented in our forum ranks, so we can't count on the relatively tiny number of deaths listed in this topic and the Cause of Death survey topic to give us a reliable male v. female statistic that applies nationally.

I wish it =were= possible to have a clearer picture.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby Kathy_A » Tue Feb 05, 2008 8:07 pm

Please add my dear mother, JoAnn, she was diagnosed with PSP early in 2006, but she had the symptoms for many years prior to her diagnosis. Mom passed peacefully on December 18, 2007. She was 76 years old. JoAnn was the mother of eleven children, including me, Kathleen.

May God bless each and every one of you and give you strength.

Thank you!

Kathy
Mom, JoAnn (76 years old), was misdiagnosed in 2001, and finally diagnosed with PSP in 2006. Everything finally made sense to us. Mom peacefully went to heaven on December 18, 2007.
Kathy_A
 
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Please add an angel

Postby larrysanne » Wed Feb 06, 2008 6:42 am

Please add my Larry to your list of PSP angels; died on January 18, 2008; husband of Anne. (Thank you)
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One more

Postby Barb2 » Tue Apr 15, 2008 10:25 am

Please add my father:

4/4/08
Duncan, father of Barb

Thank you.
Barb2
 
Posts: 49
Joined: Thu Oct 27, 2005 12:40 pm

Postby One of the Dolley boys » Sat Apr 26, 2008 6:54 pm

Today my Uncle Doug once again and forever will have peace.

Please add him to the list.

He will be dearly missed.




Jerry
One of the Dolley boys
 
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Douglass Dolley age 69 of Winslow, Maine wife to Jean

Postby jlindie » Mon Apr 28, 2008 11:14 pm

Please add my step father Douglass Dolley age 69 to your wall. Wife to Jean, father to Brandon, Karen, Darlene, Keith, Sheri and Margo. Step Father to Jody, David, Cindy, Jim, Stacy, Jeff, Randy and Kelly. 7 years with this awful disease. He was finally at peace on Saturday, April 26th, 2008.
Jody Lindie
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Postby Symon » Sun Jun 22, 2008 9:41 pm

ANOTHER ANGEL

LYNDA GOLDFARB

RECEIVED HER WINGS JUNE 18 2008

WIFE OF SYMON
<GOODLUCK> WE ALL NEED IT. Be kinder than necessary.Cause every one you meet is fighting some kind of battle!
Symon
 
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Postby JHolmes » Tue Jun 24, 2008 11:24 pm

Please add my dad to the list of angels.

Emil Schlecht - husband to Bonnie
Received his wings May 24, 2008
Age 72

Sure do miss you Dad.

Jayme
Dad pwpsp. Dx 2005, Symptoms much earlier. Received his angel wings May 24, 2008.
JHolmes
 
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post subject ANGEL WINGS

Postby Symon » Fri Jul 25, 2008 4:26 pm

LYNDA GOLDFARB
diagnosed OCT. 2004 received her angel wings JUNE 18 2008

MAY SHE SOAR ABOVE ALL THE SORROWS OF THIS WORLD.

SYMON.
<GOODLUCK> WE ALL NEED IT. Be kinder than necessary.Cause every one you meet is fighting some kind of battle!
Symon
 
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Postby eplowman » Sun Jul 27, 2008 5:51 pm

Please add my late wife Rose to the list.

Rose Plowman - wife of Ed

Age: 77

Passed away peacefully in her sleep June 21, 2008 in her 11th year of PSP.

ed p.
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Postby bonnie_b » Thu Jul 31, 2008 9:24 pm

Please add my Mom to the list.

Verna Bergman
Age 69
Diagnosed in November 2005
Welcomed into Heaven on May 18, 2008
bonnie_b
 
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Postby Angel » Sat Aug 23, 2008 9:41 pm

Please add my husband to the list of angels.

Drew Gordon
Age: 63
Diagnosed: June 2005
Passed away: Aug. 18, 2008
Angel
 
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Postby Angel » Thu Sep 04, 2008 7:50 am

addition to my last post.

My name is Mary Angela - (Angel)

please include in my husband's list of angels
husband - Drew, age 63, diag. June 05,
symp. 9yr, received wings - Aug. 18/08
Angel
 
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Postby Crazy Mary » Fri Sep 12, 2008 11:02 pm

Please add my Love to this list of Angels as he surely was and is one for me.
Stephen Bruce Hamblin left us to be with our Lord Aug. 19th 2008
Diagnosed June of 2003 it took two years to get the right diagnosis.
He was only 54 years of age
I'm sure he is playing his guitar singing and eating that fried chicken he loved so much. I love you and miss you but we will be together again some day.
Mary
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
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Please add my mom to the list of PSP angels

Postby Regena » Sun Sep 14, 2008 1:32 pm

I miss my mom so much!

Faye Falls - mother of Regena
Age: 73
Diagnosed with PSP in September 2007 (we are confident she had PSP for years)
Peacefully relieved of PSP on July 9, 2008

"Earth has no sorrows that Heaven cannot heal."
Regena
Mom age 73 diagnosed wPSP Sept. 2007
Regena
 
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Postby daddysgirl » Thu Sep 18, 2008 9:12 am

As you all might have heard .. the Houston area was hit pretty hard by Hurricane Ike. Besides downed trees and fences, the most major "damage" has been the power outage. 2.3 million customers being knocked out is pretty amazing. It looks like my zip code is not expected to have power until some time after September 22. I finally had a chance to check my email at work and saw that I had a request to add more angels.

I leave for vacation next week and can't wait ... what better time to be gone than when there is no power at the house :?
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
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Postby LRS » Sun Sep 21, 2008 11:20 pm

Please add my Precious Mother, Jean Taylor to your list of angels.
Symptoms began in Sept. 2007
Went Home to her Savior on Sept. 15, 2008
Diagnosis never confirmed
Probable PSP or ALS
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
LRS
 
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Postby gwynethj » Sun Sep 28, 2008 8:09 am

02/14/2005 George, father of Gwyneth (gwynethj)


Thank you so much for doing this.
In memory of my father, George, who passed away February 14, 2005. We all miss you so much.
gwynethj
 
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PSP Angels

Postby Luise » Thu Oct 02, 2008 7:52 pm

9/22/08 Joyce, mother of Michele (Luise)
a caring caregiver for my Mom for 7 years
Luise
 
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Postby jemma » Mon Oct 13, 2008 6:16 am

Date of death - 17th September 08
PWPSP - Dave Garland (husband of Elise Garland, father of Chris and Jemma Garland)
Poster - Jemma
Jemma, Daughter of Dave (Symptoms from 2002. Diagnosed 2004. Died 17th September 2008 aged 58.)
"With all it's sham, drudgery and broken dreams...it is still a beautiful world" (Desiderata)
jemma
 
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Please add my dear father & friend

Postby nibby12u » Wed Oct 22, 2008 10:31 pm

Date of death (10/13/2008) ,
PWPSP Roy Young age 78 ,
father of 5, grandfather of 6, Great Grandpa to 1
(nibby12u ) Daughter Darla
He will be greatly missed!
nibby12u
 
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Postby Ale. » Thu Oct 23, 2008 5:15 am

Please add another angel to the list.

My fiancé's Mum, after 9 years of suffering, passed away on October 20, 2008.

Diagnosed: 2001
Age: 66

FINALLY FREE. We all miss you so much.
Ale.
 
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Joined: Thu Oct 23, 2008 4:54 am
Location: Rome, Italy

Please add another

Postby Eric » Sat Dec 13, 2008 3:54 pm

Please add my dad to the list:

Gary G Woodfork

Husband of Sue, father of Eric, grandpa of Evan & Drew.

Died September 14, 2008

Thanks!
Eric
 
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Postby Robin » Sat Dec 13, 2008 4:30 pm

Eric -
My condolences to you and your family on the passing of your father.
Robin
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New Angel

Postby Lucille » Wed Jan 07, 2009 9:03 pm

Please add my mother-in-law Paola Abate to the list of PSP Angels.

Her battle with PSP ended yesterday January 6th at 2:10 p.m. Her funeral will be on January 10th, sadly, her 71st birthday.

She has been given her wings and set free. Although she will be missed, we are comforted knowing that she will suffer no more.
Daughter-in-law of Paola, diag. 11/2004, stage 4
She was given her wings 01/06/2009 and has been set free.
Lucille
 
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Postby Lucille » Wed Jan 07, 2009 11:53 pm

Thanks so much Ed!

You were one of the first people to respond when I began posting back in November 2004.

You and many others in this forum were my beacon, my resource, and shoulder to cry on. The advice I received from you all helped us navigate through some very dark and confusing times: from nursing homes to wheelchairs to feeding tubes.

The Doctor's were constantly amazed at my depth of knowledge of this disease...many times correcting them. This is because of this forum, and those of you who have walked this path before us.

Paola passed peacefully while I was holding her hands and the priest administered her last rights. She took her last breath so quietly, and am thankful I was there to help her pass on.

My only frustration is that there is no a CurePSP foundation here in Ontario, Canada. I want no flowers, just donations to CurePSP to help find a cure.

Thanks, thanks, thanks to all of my angels on this forum....I could not have gone through this without your love and support.
Daughter-in-law of Paola, diag. 11/2004, stage 4
She was given her wings 01/06/2009 and has been set free.
Lucille
 
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Postby daddysgirl » Fri Jan 09, 2009 2:19 pm

Lucille ...

Your mother in law was diagnosed just one month before my dad was taken away from us by that bastard PSP. It is hard to watch your loved one slowly wither away right before your eyes. Even though you feel guilty for doing so, I'm sure you (as we did) rejoiced when your loved one was finally freed from the suffering and went Home.

The Christmas season is always somber for us now as my dad passed away December 29, 2004. This year that pain for us was greatly multiplied. My dad's nephew (that was the spitting image of my father in life) was on his death bed right before Christmas. Seeing him was heartbreaking, but the fact that not only did he favor my dad in life, he favored him even more so in death. It honestly was like watching my dad pass away right in front of our eyes again :cry: Living through that horror was bad enough 4 years ago .. and to do it again was almost more that we could take. It was hard seeing my cousin just days before he passed away, but it was even harder to watch my mom stand my his bedside looking at him. In my mind, she did not see my cousin lying there, she saw my dad.

I don't make it to the forum like I did when Daddy was still in his battle. But, I am glad that they have made the List of PSP Angels that I put together as an item that is always visible. Those we lost should never be forgotten and it is my honor (although it is sad) to maintain the list. Our angels will forever soar in peace and will welcome us with open arms when we are called Home.

Take care :)
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
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Postby Lucille » Mon Jan 12, 2009 11:09 am

Laura,

My deepest condolences for the loss of your cousin...these times get harder once you've passed through it once.

You were very gracious to me during some very dark times, and along with Ed, I looked forward to your advice and words of wisdom. When my mother-in-law was bedridden and without speech this past year, I did not post to the forum, just observed. Too difficult to read all the other battles, knowing that she would be set free soon.

Keeping this list will hopefully bring more awareness to this cause! My depth of knowledge came from all of you on this forum, so let's keep it going until more people could be helped!
Daughter-in-law of Paola, diag. 11/2004, stage 4
She was given her wings 01/06/2009 and has been set free.
Lucille
 
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Joined: Thu Nov 11, 2004 2:10 pm
Location: Canada

Postby daddysgirl » Mon Jan 12, 2009 3:26 pm

Lucille ... although my cousin didn't pass away from PSP (he had Parkinson's and Cancer), his body was ravaged in much the same way. He might have weighed 90 pounds when he passed away .. he literally was just skin over a skeleton. At my dad's passing, he as well weighed about 95 pounds. But, the way that Joe held his hands, the way his mouth was opened, the way he looked in general and the fact that he was no longer able to speak at the very end threw visions of my dad into all of our eyes.

If I was able to help you out during dark times, I'm glad. I know that from my dad's diagnosis in August 2002 until he entered the nursing home in June 2003, my family had no support. :cry: We didn't know of the PSP website or the wonderful forum. So, we basically were drowning in despair. Only after my dad went into the nursing home did I discover the forum and the support group here in Houston.

Yes, Dudley Moore had PSP and it was rumored that Estelle Getty had it also. I've always said that it is going to take someone very famous getting PSP to bring the kind of attention and funding to the disease that other diseases receive (i.e. Michael J. Fox and Parkinson's). But, I would not wish PSP on anyone .. not even my worst enemy.

Many moons ago when I was a regular visitor to the forum, I expressed the wish that somehow those on the forum could meet (like at a convention). Knowing how comforting and informative it was for us when we attended the monthly support group meetings, I just think it would be great if everyone (across the country) could get together. Of course, that would not be feasible as most that come to the forum are still deep in the battle with their loved ones and they would not be able to get away .. nor would they probably want to leave their loved ones.

Take care of yourself Lucille. :D
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
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Postby Robin » Mon Jan 12, 2009 5:16 pm

I don't think Estelle Getty's diagnosis was confirmed upon autopsy. Her diagnosis during life changed to LBD.

I don't know if Dudley Moore donated his brain tissue. Does anyone know?
Robin
 
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Mom Passed Today

Postby 1387maris » Thu Jan 29, 2009 7:23 pm

Mom passed this morning at 9:00
1387maris
 
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Postby Robin » Thu Jan 29, 2009 10:53 pm

1387maris,
My condolences on the passing of your beloved mother.
Robin
Robin
 
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nana

Postby Cuisle » Sat Feb 07, 2009 2:27 pm

my granny kathleen ferguson passed away 5th Febuary at 5.00pm


lover and miss her always


X
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Postby Southern Girl » Mon Feb 23, 2009 1:02 pm

Add my mother-in-law to the list of PSP angels:

Therese Youssef Saad
Age 77
Diagnosed August 2005
Died January 1, 2009

She was survived by her loving sons, Alex and George, her sister and primary caregiver, Marguerite, her brother Gabriel, and a sister overseas.
Southern Girl
 
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PSP angels list

Postby pwruth » Fri Apr 17, 2009 5:11 am

Please add my dad Ron to the angels list. He faced his PSP with stoicism and courage and we are so proud of him.

3/31/09 Ron, beloved husband of Joy, adored father of Kelli, Kristin and Nicole, treasured Poppy of Liam, Pearl, Will, Milla, Connor, Aidan and Ethan
Daughter of Ron, diagnosed PSP Feb 2007,
passed away 31/3/09
pwruth
 
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PSP angels list

Postby Lydarose » Fri Apr 24, 2009 1:40 pm

3-24/2009 Charlene mother of Lyda (Lydarose)

Thank you for the add.
Lydarose
 
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Postby scoutmomof2 » Sun May 31, 2009 3:21 pm

Dennis (my father)
Diagnosed July 2008
Died May 22 2009 at age 59
scoutmomof2
 
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Postby janet@metamorphiz.co.uk » Wed Jun 03, 2009 9:29 pm

Please add my father to the listing:

Alan (my father)
Diagnosed January 2009
Died May 6 2009 at age 74

Thank you
Janet, Daughter of Alan - change in gait and self confidence in October 2008, big fall and head injury Dec 2008, diagnose Jan 2009, died May 2009. Now resting in peace. Death certificate states PSP, but had an unusual rapid decline.
janet@metamorphiz.co.uk
 
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My dad is now an angel

Postby daughterofanangel » Mon Jul 20, 2009 7:18 am

Add my dad to the list.

Roy Dale Swing, Sr.
Died: Friday, July 17, 2009
Nicole M.
daughterofanangel
 
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Postby bamtdm » Mon Aug 03, 2009 8:06 pm

Please add my beautiful, valiant, loving and courageous mother, "The Flower Lady"...

Anita June Bell "NitaBell" Kahn
Born 6/18/1928
Lost the fight, but won the war... we were a heck of a team, Mom!
Died 7/14/2009

**Concord, CA office of Sutter Health Hospice never showed up the final 2 days... but I was there Mama. I was there. You graced me with your trust and I will miss and love you forever.

XO"BethyAnnie"
Beth- 81 yr. old Mom diagnosed w/ PSP 2005 after 4 years of symptoms. Went to visit the garden in the sky on flower lined wings July 14, 2009... I will so miss her...
bamtdm
 
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A new PSP Angel

Postby Crystal » Thu Sep 03, 2009 8:30 am

Please add our Mother to you list:

Patricia Ann Harvey
Her long hard journey ended August 14th 2009
symptoms from as early as 1999
finally diagnosed in 2007
mother of Crystal and Lori (upstatelady)

Thank You!
Crystal....daughter and caregiver of Pat born October 5th 1937. 1st dx. NPH 2004 finally dx. in 5/07 with PSP. symtpoms from 1999. Mom's journey ended 8/14/2009. Here to help where I can.
Crystal
 
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Postby Robin » Mon Oct 26, 2009 7:28 pm

Sorry...I'm not exactly sure where it would be best to post this but I think Judy would be happy to be listed as a PSP angel.

Judy Kay Bryant, aka Judy24kt, died suddenly last week at the age of 65. Her husband Bob died with PSP in 2006. See:
http://forum.psp.org/viewtopic.php?t=2833

I had been in touch with Judy just recently to find out who had done the brain procurement for Bob in Michigan, and she kindly gave me the info. I believe the family sent out email notifications to all those who Judy had recently emailed with. I was lucky to be on that list.
Robin
 
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Postby Carrie T » Mon Oct 26, 2009 7:44 pm

Please add my father to the list: He passed on April 12, 2006
(Gary Czarapata) father to Steve, Carrie, Lance and Bryan.

Thank You
Carrie
Carrie T
 
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Postby daddysgirl » Wed Dec 16, 2009 3:32 pm

Sorry guys ... I don't make it back to the forum as often as I did when my dad was still in his battle. I have made the requested additions to the PSP List of Angels.

Although Judy (to my knowledge) did not have PSP, it was my honor to add her to the list. Believe me, any and all of us that were the caregivers for our loved ones during their battles are angels too.

Merry Christmas all :)
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
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Postby JenH » Tue Mar 23, 2010 2:41 pm

Hi, if you have a chance, please add my mother to the list.

2/6/2010, Bernadette, mother of Jennifer (JenH)

I found this prayer and thought it was so fitting for this disease.

God saw you getting tired and a cure was not to be.
So He put His arms around you and whispered "Come to Me".
With tearful eyes we watched you suffer, and we saw you fade away.
Although we loved you dearly, we could not make you stay.
Your golden heart stopped beating, hard-working hands to rest.
God broke our hearts to prove to us, He only takes the best.

Thank you.
JenH
 
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Postby daddysgirl » Thu Mar 25, 2010 2:23 pm

Jennifer .. I've added your mother's name. We also came across that poem and found it fitting .. so much so that we included it on the booklet at my dad's funeral.

I still hate this damn disease. It's been 5 years since my dad passed away, but I remember his journey into hell like it was yesterday :cry:

Take care!!
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
daddysgirl
 
Posts: 349
Joined: Tue Sep 09, 2003 10:36 am
Location: USA

so sad

Postby aurie » Wed Jun 09, 2010 5:24 pm

If possible, please add Vic, my father-in-law.

Diagnosed: 09/2008. misdiagnosed with PD in 04/2005, symptoms since summer 2004.
DECEASED: June 6th, 2010
I'm sorry for anyone who deals with this disease. Although I don't post, this forum has been of great help and comfort to us. thank you :-(
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Postby Robin » Wed Jun 09, 2010 6:42 pm

Aurie,
My condolences on your father-in-law Vic's passing.
Robin
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My PSP Angel, Eddie

Postby Nancy Vaughan » Mon Dec 20, 2010 4:55 pm

It has taken me a year to be able to post this. Please add my beloved Eddie Vaughan to your list of PSP Angels. This forum was so beneficial to us throughout his illness, and I have been delinquent in getting back on here to comment. Even now, it brings tears to my eyes just remembering how much of a lifeline this forum was for us. I see familiar names and will continue to lift all of you in prayer. Eddie, a life-long farmer, left the bonds of PSP to fly to Jesus on Nov. 6, 2009. He was in the loving company of family and friends both in this world and in the eternal realm. God bless each of you still struggling with this awful disease, and may God grant you peace and give you strength as you deal with it on the front lines of battle. I was on here as Marmee4, but forgot my password, so I have made a new account in my name. God has brought me from Va Beach to Duke Divinity School in Durham, NC, where I am pursuing a Master of Divinity degree while serving two rural Methodist churches as their pastor. God IS good. God can turn our sorrows into joy. Eddie will be forever in our hearts and present in our thoughts. Eddie's six children will never forget their Daddy, and his five beautiful grandchildren will always hear the stories of their wonderful Grandfather told and retold. He loved them all so very much.
Husband Eddie, my PSP Angel, flew to Jesus on Nov. 9, 2009, after a valiant fight.
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Postby Robin » Mon Dec 20, 2010 5:06 pm

Nancy/marmee -
My condolences on your loss. I think you generously gave away a hospital bed shortly after your husband died. Do I remember correctly that your husband donated his brain for research?
Robin
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Postby Nancy Vaughan » Mon Dec 20, 2010 5:10 pm

Yes, Robin - I was able to find a lady who needed a hospital bed and was glad to pass it to her. Eddie refused the brain donation - I tried several times to explain its merits, but he was just uncomfortable with it. I applaud you for your vigilance on the Forum! You have touched many lives, and we are all grateful.
Husband Eddie, my PSP Angel, flew to Jesus on Nov. 9, 2009, after a valiant fight.
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Postby Robin » Mon Dec 20, 2010 5:12 pm

Nancy/marmee -
Best wishes to you as you enter another holiday season without your dear husband.
Robin
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Postby daddysgirl » Mon Dec 20, 2010 9:02 pm

Nancy ...

I don't make it back to the Forum very often unless I receive a request to (sadly) add another PSP Angel to the growing list. I created the list in memory of my dad, and it is my immense honor to keep it going.

As soon as I finish this reply, I will put Eddie's name on the list. It's so hard to believe that it's been 6 years since my dad passed away. Six years ago on Christmas Eve he was rushed back to the hospital (for the 4th time in 4 months). He finally allowed God to take him home on December 29th. So, this time of the year is very bittersweet for us :cry:

Take care and may you have a Blessed Christmas!!
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
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Another Angel Has Gotten His Wings

Postby Camaguay » Sun Sep 04, 2011 3:45 pm

I'm not sure if you are still adding to the list or not, but if you are, please add my sweet husband Paul who passed away on August 27, 2011, leaving behind myself, and our three children, agess 25, 16, and 15. We miss him so much. It's only been one week since he passed over and we are all devasted beyond words.

Thanks and God Bless all of you who are dealing with this disease in one way or another.

Janine Aguero
Janine Aguero
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Postby eplowman » Sun Sep 04, 2011 4:05 pm

Janine,

Thank you for informing us. I regret the loss of your husband and your children's father. You have much on your mind and heart just now. You can be thankful the limitations and sufferings inflicted by PSP are gone forever.You and the family are in our thoughts and prayers.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby daddysgirl » Mon Sep 05, 2011 9:24 pm

Janine ...

I'm so sorry for your loss and it will be my honor to add Paul's name to our list of PSP Angels. All of your "firsts" without him will be hard, but as time goes on you will smile on those special occasions when you remember those special days in the past with Paul.

Take care ....
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
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Postby daddysgirl » Mon Sep 05, 2011 10:03 pm

To all of those that are still in the battle against that bastard PSP and to all of those that have already lost their loved one ,,, I truly understand what each and every one of you are going through ,,, and that absolutely breaks my heart :(

It seems like forever ago and it seems like yesterday since my dad lost his battle against PSP. It was so hard watching a man that was so full of life .. that would talk to the wall (if it would talk back) become silent .. a man that NEVER met a stranger, that always shook another man's hand and always kissed the ladies on the cheek not be able to extend his hand or lean in for a kiss. Daddy was a man on the stage for a roast and toast that could only be toasted because no one (even in jest) could say anything bad about him. Daddy was a man whose wife saw him for the first time when she was 9 (he was 11) and knew from that day he was the guy for her - and, she knew right - she never dated another man, never kissed another man and was blessed to be able to celebrate their 50th anniversary before his passing. Daddy was a man that everyone knew they could call upon and he would show up to do whatever was asked. Daddy was a man that loved to dance and if I could do just one more thing before I died, it would be to dance cheek to cheek with him again to Silver Wings or Red, Red Wine or .... Daddy was a man who was so loved there were hundreds of people at his services.

I don't remember if I'd ever relayed this story on the Forum, but to this day, when we see a ladybug, we know Daddy is with us. The day he passed away there was a ladybug on his hospital room window (inside). After everything was packed up, his stuff was put in my sister's car and stayed overnight in the hospital parking lot (his nursing home and hospital were about 75 miles from home). The next day she was on her way back to Houston and said she noticed a bug on her dashboard so she opened up her window and tried to shoo it out. It didn't go. She watched the ladybug crawl along the dashboard, get on her steering wheel and then come up on her shoulder ... at which point she said "OK Daddy, you can go home with me." She said that when she got home and opened up the car door, the ladybug flew off. There have been more times than we can count since then in which we will see ladybugs at places or occasions where Daddy would have been in life. Each and every time, we smile and say "Hi Daddy!!" Thank God ladybugs are cute ... we're just so thankful it wasn't a roach on Daddy's window that day!!! :lol:

God Bless all of you still in the battle and God Bless all of us that were previously on that battlefield.

Take care everyone :)
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
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Postby Robin » Mon Sep 05, 2011 11:17 pm

Laura,
Thanks for sharing the ladybug story. It's very comforting.
Robin
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Re: List of our PSP angels ...

Postby syork » Fri Feb 24, 2012 2:47 pm

Please add my mothers name to the list of PSP angels.

Nov. 16, 1932 - Feb. 14, 2012 Jean, mother to Sherry (syork) and Marcia

Thank you,
Sherry
Mom diagnosed with Parkinson's 4/2008 then with PSP 8/2010 Hospice care started November 2011
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Re: List of our PSP angels ...

Postby abhihbti » Sun Feb 26, 2012 10:05 am

Dear All

After years of struggle, My father left for heavenly abode, on Tuesday, 21st Feb, 2012. This forum has been source of great support since last two years. I learnt various measures to cope problems, through the various posts/experiences of others, . I thank to the admin/ knowledgeable members for this movement against the disease.

Details

Name : Krishna Kumar
Age : 67 years
Onset: Showed 1st symptoms of change of gait in 1999. became incontinent in 2007, had a stroke in Jan 2010, and became totally bedridden. Had supra-pubic catheter for urinary incontinence. suffered from acute constipation and swallowing problems.
Cause of death : recorded as PSP in his death certificate

If any care giver from India/other locations needs any kind of guidance /help, please do send me personal message.

Regards
Abhishek
With Regards
Abhishek
From Delhi, India
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Re: List of our PSP angels ...

Postby Robin » Sun Feb 26, 2012 2:14 pm

Abhishek,
My deepest condolences to you on your loss. It's very kind of you to offer to assist others in India.
Robin
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Re: List of our PSP angels ...

Postby abhihbti » Mon Feb 27, 2012 10:32 am

Hi Robin

This is the least I can do. I thank you, Ed, Dana and others for always offering a helping hand to one and all, on this forum. No need to remind you, that your advice has made the life of patients and caregivers, less painful and enabled us to take more informed and rational decisions.

thanks a ton.

Regards
Abhishek
With Regards
Abhishek
From Delhi, India
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Re: List of our PSP angels ...

Postby eplowman » Fri Sep 07, 2012 11:40 pm

Condolences to you and your family, Abhishek. Your father's illness and helplessness weighed heavily on your hearts. You provided him with loving and diligent care as best you could with such an untreatable, incurable, ever-worsening disease. Now, at last, his struggles -- and yours -- are over. He is free from suffering at last. Take comfort in knowing that, and treasure the good memories of earlier years.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: List of our PSP angels ...

Postby Alice Gillam » Thu Sep 20, 2012 1:23 am

Please add my wonderful husbands name to the list of psp angels. Fred passed away Aug. 19, 2012. He was at home and in my arms, and it was so peaceful. He left behind the love of his life, me, and two awesome daughters and two grandchildren, many loving family members and friends. We were married almost 46 years. He was and is the love of my life.
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Re: List of our PSP angels ...

Postby Robin » Thu Sep 20, 2012 10:20 am

Alice,
Condolences to you on the loss of your dear husband.
Robin
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Re: List of our PSP angels ...

Postby rachbaker » Thu Sep 20, 2012 4:47 pm

Please add my Father to the list...

Stephen E. Sutton, Sr., 59, passed away August 6,2012- husband to Kathy- father to Tracy, Stephen Jr., Sarah, and Rachel- Pawpaw to 11 grandchildren.

I cared for my Dad for 2 years before his passing in my home.... we sang Amazing Grace as he made his journey through the Golden Gates. I can fill my days but I can't fill my heart...
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Re: List of our PSP angels ...

Postby Robin » Thu Sep 20, 2012 7:59 pm

Rachel,
My condolences on your loss.
Robin
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Re: List of our PSP angels ...

Postby HelenK » Mon Nov 12, 2012 8:53 pm

11/02/12 Morris (husband of Helen) died with PSP after a 6yr. battle (HelenK)
My husband has psp and is currently on the drug study davunetide. He is in the last stages of the disease.
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Re: List of our PSP angels ...

Postby Robin » Mon Nov 12, 2012 9:59 pm

HelenK,
My condolences on your loss.
Robin
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Re: List of our PSP angels ...

Postby Missbree » Wed Nov 21, 2012 10:29 am

Reading all these posts is so sad. I cry for every person that has had to post on this board. May all your loved ones rest in peace.. My father passed away on 11/1/12. Much like all of your family members he was a great man and didn't deserve this horrible disease. Please add him to your angels list.. Alford Burden 8/27/43-11/1/12 beloved husband and father..
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Re: List of our PSP angels ...

Postby beanboo » Sat Jan 12, 2013 5:31 pm

My mom lost her fight with this horrible disease on December 31st at 11:00 pm. She just turned 62 on the 17th of December. My mothers name Eileen . :(
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Re: List of our PSP angels ...

Postby diane berglund » Sat Feb 02, 2013 5:24 pm

My husband Gene Berglund lost his battle with PSP on April 7, 2012. He lived with PSP for 7 years and was 64 when he died.
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Re: List of our PSP angels ...

Postby TonyGee » Mon Mar 18, 2013 4:12 pm

My father Mario passed away from PSP at age 81 on March 8, 2013. He had been diagnosed about five years earlier.
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Re: List of our PSP angels ...

Postby fayelee » Mon Apr 29, 2013 8:26 am

3/22/2013, Queen Esther, my mother, PSP. She gave it a tremendous fight for ive been assisting her since 2001 with total care since 2006. She was 83 and memorialized this past saturday. A woman of many achievements who earned her bachelor of arts degree at 61 yrs old, a few years before the symptons started, and something was starting with the handwriting then but my mom overcomimg obstacles grabbed her manual typewrier. I miss and love her so so much. She was my best friend. Forever loved.
Cynthia
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Re: List of our PSP angels ...

Postby hippo2 » Sun Jul 28, 2013 8:46 am

Jeannie Campbell, mother of Scott Campbell and Martha Griffin, passed away July 25. She was diagnosed w/PSP in Aug 2010, with symptoms approx 3 years before. She would have been 73 on August 9. There was no brain donation to respect her wishes. To everyone on this board, thank you for the support and information.
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Re: List of our PSP angels ...

Postby helendove » Fri Aug 02, 2013 1:49 pm

My father passed away 5 years after diagnosis. He fought the disease with as much dignity as it allows. In the end his body just stopped working.
He died in his sleep on July 31, 2013. We will all miss him and who he was before PSP took away his life. He was 73.
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Re: List of our PSP angels ...

Postby KDupree » Sat Aug 24, 2013 11:40 am

Please add my husband's name:

8/18/2013, Timothy, age 58, husband of Kathy (KDupree), son of Evelyn, father of Erin and Jay

Thank you for such a wonderful tribute for PWPSP.
God bless!
Kathy

***The brain autopsy report from the Mayo Clinic came back. Tim's neurologist called to discuss the results. The pathology report confirmed Tim had CBD not PSP nor Alzheimer's. I was surprised there was no evidence to confirm PSP. In our discussion, he said Tim had a clinical presentation of PSP with a pathological confirmation of CBD. Tim did not have an alien hand symptom, but did have loss of speech early in the disease long before loss of mobility. I am trying to think of this as noted in the information about the two diseases and as the neurologist said it-two faces of a coin or of the same disease. At this time no one knows for sure, but both are horrible. As more people donate, more can be learned to help others.***
Last edited by KDupree on Fri Feb 14, 2014 6:23 pm, edited 1 time in total.
Husband 40 yrs, Tim, b.1955 diagnosed w/PSP in 3/2010; symptoms slurred speech/vision problems early 2009; misdiagnosis dementia of Alzheimer's type 2009; Homegoing age 58 on 08/18/2013. Pathology report-Mayo, Jacksonville-confirmed CBD not PSP.
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Re: List of our PSP angels ...

Postby daddysgirl » Tue Feb 11, 2014 5:22 pm

Hello to all that have posted in the last year or so. I don't make it back to the forum as much as I did when we were living through the PSP journey. It might take me a few days, but I plan to go in and add those that have requested that their loved ones be added to the List of PSP Angels since my last update.

I know for me putting it together, it brought a sense of peace knowing that there was a place to honor my dad and all others that lost their battle to PSP. It absolutely broke our hearts to see my dad go from a robust, outgoing man that never met a stranger (and would talk to the wall if it would talk back :lol:) to a mere shell of that man that couldn't speak and had to rely on others for all of his total care. It's so hard to believe that he will be gone 10 years this coming December.

My heart goes out to all that are still in the fight and to all that lost their loved ones to this bastard disease. One thing that really helped us was finding a support group in our area and finding this forum. Just knowing you're not alone in the battle helps (in a small way) to cope.

Take care .. may God Bless each of you and I'll work on getting the list updated.

Thanks!!
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
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Re: In memory of our PSP / CBD Angels ...

Postby daddysgirl » Sun Feb 16, 2014 11:56 pm

As promised, I have updated our Memorial list. As I had been away for several years, I apologize if I missed any requests. In the beginning, the forum was basically all about PSP, but sadly has grown to include CBD and other related brain diseases. All Angels will be memorialized here <3

I had done this before, but I just went in a counted how many Angels we have. Sadly :( we've lost 163 .. 77 women and 86 men .. but, I know the total is so much more as there are many out there that are not aware of and participate in this forum.

My deepest sympathy for those that lost their loved ones and my greatest support to those that are still in the battle!!

Take care - Laura
Laura

Oldest daughter of Milton, diagnosed August 2002, time on earth 03/01/33 - 12/29/04
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