Who are we....


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Who are we....

Postby nokesl » Wed Aug 18, 2004 2:18 am

NOTE: Broken topic repaired 02/20/2012. Add 94,587 prior views to views on Topics list page. - Moderator

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There are so many of us here, some that post regularly and some once in a while, new comers arriving all the time. I wondered if anyone would be interested in joining me in creating a kind of register here on the forum. Just a few simple questions with no obligation to answer anything you didn't want to. I'll start, feel free to add.

NAME: Georgie
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Mary Vincent
DATE OF BIRTH: 3/7/37
DECEASED: 20th September 2005
DIAGNOSED: 12/8/03 symptoms since 1999 now stage 3
LOCATION: West Midlands, England
BACKGROUND: Mother was divorced, 3 children. Worked as a seamstress, cleaner (while children were little), Rep for a company supplying plants to supermarkets, hairdresser, retired.
nokesl
 
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Postby aimee422 » Wed Aug 18, 2004 2:50 pm

Name: Aimee
Relationship to PSP: Grandmother with PSP
PwPSP: Betty Rubbelke
Date of birth: September 25, 1926
Diagnosed in 1998
Passed away August 13, 2004 and finally free...
Location: Maplewood, MN USA
Background: 27 year old female in sales at a local salvage yard. I am married with a beautiful 11 month old child. I thank god that she was able to see her great grandma before she passed
aimee422
 
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Postby rhondascissorhands » Wed Aug 18, 2004 9:00 pm

Name: Rhonda
Relationship: Daughter in law
PWPSP: Joe Dean
Date of Birth: July 16 1938
Diagnosed: Sometime around 1998
Location: Houston Texas
Background for myself, I am 38 and have 3 children two are twins age 5 and a singleton that is 8. My dh is 42 and eldest of Joe. I am a hairdresser. My dh is a musician.
Background on Joe. Born in Fort Worth, and was a musician/salesman/dean at a college/only child.
Had been on a trip to guatamala, had head injury at age 14, and had a time of excessive drinking, but quit sometime early on.
This is all I know, there may be more,

Rhonda/daughter-in-law of pwpsp Joe Dean
rhondascissorhands
 
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Postby santafe » Wed Aug 18, 2004 9:15 pm

Georgie great idea. I've also added occupation of person with PSP. I'm curious if there are any similarities (chemical, location, military, etc.)...
NAME: Amy
RELATIONSHIP TO PSP: Husband with PSP
PSWPSP: Stephen
DATE OF BIRTH: 1950
DIAGNOSED: 2/3/2004 Symptoms since 2000(some smaller changes
even earlier when looking back)Stage 3
LOCATION: Long Island, New York, USA
BACKGROUND: 49 years old, married 31 years,1 son, 2 grandchildren,Work fulltime as a Code Enfocement Officer for municipal BuildingDept.

PSWPSP BACKGROUND: No military duty. Worked as oil burner tech.
for 2 yrs; security guard at college for 5 years; an appliance
repair tech. for 20 years (worked with microwaves, freon and
formaldehyde); worked as a maintenance man in public library
last 5 years (during which major renovations took place and
rumors of possible heavy uses of pesticides in building)

Edited: Stephen passed away on 2/11/2005 at age 54. He is finally free from this nightmare and he is missed every day. Those we held in are arms for a brief time we hold in our hearts forever.
santafe
 
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Postby mythsrs » Wed Aug 18, 2004 10:57 pm

Georgie-
This IS a good idea! Here goes my info-
NAME-Myth
RELATIONSHIP TO PSP- mother has PSP
PERSON WITH PSP- Patricia Burkhart
DATE OF BIRTH - 12/29/32
DIAGNOSED - 12/31/2001
LOCATION - El Paso, Texas
MY BACKGROUND - married, 2 children, 23 & 28 yrs old, moved to San Francisco from Texas 4 years ago, not working since the move so I can be free to go back and forth to help with my mom. I have a female Weimaraner, Heidi, 7 yrs old, who is my best buddy.
BACKGROUND ON PWPSP - born and raised in Milwaukee, WI, moved away when she married. 3 children, all healthy. Has had her own designer clothing stores, been in real estate, and just before she retired, had her own furniture store in Barrington, ILL.
Noticed a change in her shortly after a hysterectomy in 1997.
mythsrs
 
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Postby Pauline » Thu Aug 19, 2004 12:20 am

Name: Pauline Sodermark
Relation to PwPSP: wife (married 8 yrs)
PwPSP: Linwood "Greg" Hildreth
Date of Birth: Feb 18, 1942
Diagnosed: Symptoms began 1999; diagnosed July 2001, Stage unknown - does not fit profile of any particular Stage
Location: Corinth, Maine
Background: Greg: Born in mill town (Old Town, Maine), lived across river from pulp mill or close proximity for 46 years; worked in woolen mill, shoe manufacturing, & pulp mill 34 years total (26 pulp mill); divorced w/2 children, married & divorced w/1 adopted child; took up running at 45 yrs of age, competed in marathons, ran Boston Marathon twice & did all 27 miles both times; married Pauline in 1996;
Pauline: Born in Corinth same house as we live now; married/divorced w/NO children; remarried 1996. Worked for car dealers, civilian employee US Army 8 yrs, USAF 5 yrs, Federal Aviation Admin 19 years. Retired Air Traffic Controller in '98.

<u><b>What I would like to see happen: </b></u>Poll all members of the forum to try to figure out what chemical [}:)] may have triggered this PSP gene to become active in their loved ones.

Pauline
Pauline
 
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Postby Cecilia Camacho » Thu Aug 19, 2004 12:55 am

NAME: Cecilia Camacho
RELATION TO PWPSP: Wife of 7 1/2 years.
DATE OF BIRTH:12/14/37
DIAGOSED; 2/2000 Parkinsons Disease. New PSP diagnosis 7/2003. Stage 4
LOCATION; Visalia California (Central Valley).
BACKGROUND: Toney has worked in the fields as a cotton picker, appricot picker, shed boy during the school season as a young man. Worked as a car salesman right after the Navy. Then a short stint in a nursery with plants. For 37 years he was a mailman. He retired sometime in 1993. After he retired, he worked at a hospital as a custodian and then for the City of Visalia, also as a custodian for about 2 years. That's when we started noticing his "illness" changes. He was married/divorced for 37 years. Then married me. He has 3 adult children and numerous grandchildren.
I'm 52, still working for the Department of Motor Vehicles. My second marriage also. I have 2 adult children. Two grandchildren and one on the way.

Can't pinpoint how, where, or when he may have been "hit". Navy? Japan? Pesticides? Cleansers? Disinfectants? Nobody else in his family has had this disease. He didn't do drugs or much drinking per se.He did smoke for a few years but quit cold turkey over 30 years ago. Always been healthy and involved in sports. Very atheletic. Very hyperactive. Always busy doing something. Very clean and organized. But Not anymore.
Cecilia Camacho
 
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Postby katygirl » Thu Aug 19, 2004 7:57 am

<b>Name:</b> Cindy Lafleur
Relationship to PwPSP: Daughter
<b>PwPSP:</b> James Brown
<b>DOB:</b> 1939
<b>Diagnosed:</b> Dad was finally diagnosed 4/2003, but has had symptoms since 1996. Treated for PD since 1998.
Location: Albany, NY
<b>My Background:</b> I am married, 3 grown "step-children". Professional woman, who loves to play golf. Katy is my 13 year old dalmatian who is my best buddy, (next to my husband of course!)
<b>PwPSP Background:</b> Dad was a professional who was an Executive in State government. He retired at 55, and within a year of his "dream" retirement which was to golf everyday in Myrtle Beach, he began falling over backwards, no reason. I believe that pesticides and chemicals that are applied to golf courses, and his ingestion as years ago he smoked (would leave a lit cigarette on the ground while over a shot and then resume smoking that cigarette), may be a factor in Dad's PSP.
katygirl
 
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Postby janvan » Thu Aug 19, 2004 10:23 am

Georgie,

Great idea to get and share info on PWPSP and their caregivers.

NAME:Jan
RELATIONSHIP TO PSP - Wife to PWPSP
PWPSP: George Van Schaik
DATE OF BIRTH: 12/24/1932 - Dayton, Ohio
DIAGNOSED 1/31/04 - Symptoms since 1996-7 now in stage 3/4
LOCATION: Ft. Lauderdale, Florida

PWPSP BACKGROUND:
Graduate of University of Ohio. Worked as National Director of Operations for a large fast food chain (Red Barn)in the 50s & 60s. Moved to Florida in the 70s. Owned own retuarant for 2 years and then became a Real Estate Broker until his retirment in 2001. Forced to retire because of his illness. There are 3 boys and 2 girls between the ages of 34-50. All but one son live in Texas and Missippi. The one son lives in Hollywood, Florlida. George was very
athletic and outgoing. He play raquetball until he was 62 years old. Now he is wheelchair bound and can hardly speak to be understood. Has to be fed and is starting to choke on his food/fluids etc. Eyes are in a fixed upward gaze and he body is very rigid. He is in constant pain now. He is now also in diapers as his bladder and bowel muscles have started to freeze up. I go everyday to see him and sometimes I stay until he is in bed and I lay with him for a little while till he goes to sleep. So sad to see him this way. But, the nurses and doctors have all told me I can't do anymore than I am doing.

MY BACKGROUND:
Born in Somerville, MA. May 8,1942. Served in the USAF for 2 years in 1962-63. Have 2 daughters, from a previous marriage,that live on Cape Cod. One is married with 2 children and the other is single. George and I married 22 years ago.
I retired early form my job a Citibank 2 years ago to stay home full time with George. I was a Credit Training Officer for the last 10 years and travelled all over the world. However, when George started falling and having surgery it was clear he could no longer be left alone. He is now in a nursing home for the last 5 moths. I volunteer there 3 days a week. This way I can keep a real close eye on him and he feels like I am still with him a lot. It is good for both of us.
janvan
 
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Postby daddysgirl » Thu Aug 19, 2004 3:40 pm

What a great idea. I had hoped that one day we could all meet ... this is the next best thing !!

<b>NAME</b> ~ Laura Gwosdz
<b>RELATIONSHIP TO PSP </b>~ Father with PSP
<b>PERSON WITH PSP </b>~ Milton Gwosdz
<b>DATE OF BIRTH </b>~ March 1, 1933
<b>DIAGNOSED</b> ~ August 2002
<b>LOCATION</b> ~ Until admittance into Avalon Place Nursing Home in Wharton, Texas my dad lived in Manvel, Texas and Houston before that after his marriage in 1954.
<b>MY BACKGROUND </b>~ 44 years old ... Single (AND LOVING IT). Native Houstonian. Wealth Management Administrative Assistant .. have been with the bank for 19 years. Middle child of five .. 2 older brothers, 2 younger sisters. Weeks are spent working and when possible, hanging out with friends. Weekends are spent with mom and dad. The nursing home is about 65 miles away and it's hard to get there during the week.
<b>BACKGROUND ON PWPSP </b>~ My dad was seen by my mom for the first time when she was 9 years old ... she told her mother that day that she saw the boy she would marry someday ... and she did. My parents celebrated their 50th wedding anniversary in April and there were only about 245 people at their party. After high school my dad joined the Army to "see the world". That didn't happen .. he never got out of Georgia. His trade for most of his working years was as a welder ... he retired from Houston Lighting & Power. Looking back, I can remember seeing an ad once for an attorney that was looking for welders that had "loss of balance", "falling" & "vision problems" as some of the sypmtoms listed. HUMMMMM ?!? Daddy survived two different types of cancer and was in remission for 3 years before his diagnosis of PSP. Daddy's life was his family and the Knights of Columbus. He received his K of C 50 year pin in August 2003. His hand was always stretched out to shake a man's hand, and the women always got a kiss on the cheek. The number of people that have visited him in the nursing home and now at the hospital are a testament to the man that we all love. My parents loved to travel. Hawaii was their dream destination (mine too!!), and they were fortunate to go to Hawaii twice. They had a goal and were able to complete it just months before Daddy's diagnosis ... they went to all 50 of the United States and all but one of the Canadian provinces. My last trip to Hawaii was just 2 months after my dad's diagnosis .. it was a very bittersweet trip for my sisters and I.

I know it will never be possible to meet all of you in this world. I look forward to the day that we all meet in Heaven.

Take care ... [:)]
daddysgirl
 
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Postby jz » Thu Aug 19, 2004 4:15 pm

NAME: Julie
RELATIONSHIP TO PSP: Daughter
PwPSP: Mother
DATE OF BIRTH: May 1929
<b>Date of Death: June 19th, 2006</b>
DIAGNOSED: 12/03. Spring 2000 went on Prempro. Dec 2000 diagnosed with mild demential. Dec 2001, diagnosed w/Alzheimer's. Dec. 2002 diagnosed w/Parkinson's. I think it was the Prempro that triggered the PSP.
Home Town: Owosso, Michigan. Town of about 10,000 people.

I miss her so very much.
jz
 
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Postby grandma » Thu Aug 19, 2004 5:32 pm

Name: Sharon
Relationship to PSP: Mother
Date of Birth: 07/17/34
Diagnosed: May '04
Location: Maine
About me: Third in birth order, with 2 sisters and a brother. My husband retired military. I worked medical over 20 years. Now I am a teacher. Married in 1977, (27 years!)
About Mom: Divorced after 19 years to our dad, married 2nd time for 22 years. Mom to 4 kids. Grandma to 4 kids, and greatgrandma to my granddaughter. Mom raised by different foster moms. Worked in shoe shops for 20 some odd years, then worked for G.E. Retired early and didn't keep too busy. Noticed changes in her at about when she was in her early 60s.
grandma
 
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Postby tam » Thu Aug 19, 2004 6:16 pm

NAME: Tam Bredemeyer
RELATIONSHIP TO PSP: Father
PwPSP: Talmadge Bredemeyer
DATE OF BIRTH: 01/27/31 - Roscoe, Texas
DIAGNOSED: 1999
PASSED AWAY: 08/13/04
LOCATION: Lancaster, Texas
PwPSP BACKGROUND: Born and raised on a farm. Served in the U.S. Army at the nuclear test facility at White Sands, New Mexico during the Korean War. Was a forty year employee of Sears & Roebuck Co. Loved anything to do with the outdoors.
MY BACKGROUND: Born in 1966 in San Antonio, Texas. Played all sports in high school. Worked in city services right out of high school. After father's retirement, ran a remodeling company with him until he was struck. Divorced for 14 years with no children. Have worked for the last six years in the service industry as a bartender and D.J.
tam
 
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Postby PJ » Thu Aug 19, 2004 9:31 pm

<b>NAME</b>: Pamela
<b>RELATIONSHIP TO PSP</b>: Father with PSP

<b>PwPSP</b>: C S Edwards
<b>DATE OF BIRTH</b>: 5/26/35
<b>DIAGNOSED</b>: 6/2004; symptoms since 2000 with a mix of all stages
<b>LOCATION</b>: Dallas, Tx
<b>PwPSP BACKGROUND</b>: Father is married 50 years; 3 children, 4 grandchildren, 1 great-grandchild. Retired postal worker; 16 year remission from lymphoma cancer; too many professional accolades over the years to name; loved to work in his lawn and garden until his health deterioated (used pesticides over the years without wearing protective gear...Mom always told him one day the side effects of that stuff may show up[:(]) Mom is his main caregiver.

<b>My background</b>: Married 16 years, 2 children from 1st marriage (27,22), 1 child from current marriage (15), 1 grandchild (4); worked as a bodily injury claims adjuster for Allstate Insurance for 14 years before leaving in 12/1998; have basically been a home engineer since; youngest child has Tourette Syndrome and it appears the only family member that has ever been officially diagnosed...we think my Dad may have had TS as a child, too. I am the oldest sibling of three.
PJ
 
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Postby suzy » Thu Aug 19, 2004 10:41 pm

Posted - 08/19/2004

NAME: Diana, aka, suzy
RELATION TO PWPSP: wife, married 38 years
PWPSP: "Rip"
DATE OF BIRTH: 4/1/34
DIAGNOSED: Officially diagnosed May 24, 2004, Rip's speech therapist diagnosed him in early April 2004, talked to Neurologist who began testing. Diagnosed in 1998 as having a stroke.
LOCATION: Ocean City, MD, USA.
BACKGROUND: Hubby lived on a farm until the age of ten. The family moved to a steel mill town and lived there until 1952, in the Army for 2 years, lived in CA for 2 years, back to steel mill town for another 3 years, moved to VA, outside of Washington, D.C. for 36 years.
MY BACKGROUND: Born, schooled and worked (Federal Government) in D.C. Moved to VA when we got married. Parents of two adult sons. Took time off from work until the youngest was in grade school. Worked in VA for Non-profits and retired at hubby's request in 1996.

I. too, would love to know if the environment has something to do with this disease.
suzy
 
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Postby AnneRN » Fri Aug 20, 2004 12:41 am

Name Anne Burns
relation daughter
PwPSP my father
DOB April 16, 1929
DOD December 31, 2003
daddy worked in paper mills all of his adult life...he told stories of picking cotton in Baldwin county, Alabama.
First started showing signs in 1994-95 (looking back on it all)
Was diagnosed July 2002

About me...
43 yrs old, Labor and Delivery RN, living right outside of Birmingham, Alabama..married at age 15 (pregnant, of course) and had 2 daughters, now ages 27 and 25. My oldest is married and has a 4 1/2 month son (my first grandchild!). He is named for my father They live in Helena, Alabama (outside of B'ham)...my youngest in planning her spring wedding and lives in Tuscaloosa, AL. I divorced their father after 12 yrs of marriage and remained single for 13 yrs. I married my
"gift from God" husband, Dennis, in Feb. 2001. He has been an absolute blessing to me and my family....never thought I'd be so lucky to find such a caring man...he has a 22 yr old son who lives in Kentucky.

Mother and Daddy have 5 children, 4 sons and me! We are a close family...perhaps it's the "Italian" in us! We are now battling bone cancer with mother, along with a neuro problem that prevents her walking without a walker and for a distance, she goes by wheelchair..

I have 2 silly little dogs...looks to be a mix of border collie and cattle dog!! Some of the ugliest things you'd ever see but they sure do love me! My stepson found them on the side of the road not too far from our home...needless to say, they stayed!! I think they know I was their "saving grace"!!

this is a great idea!
AnneRN
 
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Postby diman » Fri Aug 20, 2004 8:42 am

Name: Diane
Relation: Wife of 39 years
PWPSP: Manny
DOB: 11/29/45
Diagnosed: June 2004
Location: Little Compton, Rhode Island
PWPSP Background: Manny worked for 28 years for Pepsi Cola as a driver salesmen. He was also in the army and stationed in Viet Nam for 1 year where they constantly sprayed Agen Orange close to him.
Manny was a very active man and is still trying as much as possible to continue with this active life style but as you all know, it is getting very difficult. He is in the 1 to 2 stage of this awful disease and hopfully he will remain her for many years to come. I do have hope.
My Background: I worked for an insurance company for 28 years. Took early retirement at the age of 50 along with Manny about 4 years ago. Our plans were to travel in our motorhome and see the country. We are continuing with this dream although, now that he cannot drive, our motorhome was sold and we now have something small that I can handle. We are making the very best of every day that we have.
diman
 
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Postby Rhonda » Fri Aug 20, 2004 1:02 pm

NAME: Rhonda
RELATIONSHIP TO PSP: Father with PSP
PWPSP: Ron George
DATE OF BIRTH: 2/15/35
DIAGNOSED: July, 2001, symptoms since 1993/1994
LOCATION: Bluffton, OH
BACKGROUND:
Dad: father of 3, 2 sons (ages 46 & 40) and 1 daughter (age 45), husband to mom for 47 years. Was in the Airforce for about 7 years. Stationed in South Pacific areas, also in Germany performing bomb inspections. Retired from truck driving after 40+ years. Prostate cancer survivor.
Me: married (2nd husband) for 14 years, 2 daughters - ages 25 & 12
Accountant in a public accounting firm for 24 years. High School Volleyball referee for 7 years. Enjoy attending/watching Ohio State University football and basketball games. Have a new puppy - miniature schnauzer, named Sadie (9 weeks old) - spoiled rotten already!
Rhonda
 
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Postby Dana » Fri Aug 20, 2004 1:14 pm

Good Idea!!!!!

Name: Dana Loy
Relationship to PWPSP: Wife of 41 years.
PWPSP: Charles
Date of Birth:7-8-1935
Diagnosed: 2001 Stroke in 1999 affected left side. Symtoms since a little before then.
Location: East Texas USA
Background: Graduated Detroit High School, Detroit,Tx. Paris Junior College , Paris,Tx. Texas Tech. Lubbock,Tx.Masters ed. ETSU Commerce. Teacher: Bryan Adams High School, Dallas,Tx. Dimple High School, Dimple ,Tx. Detroit Elementary Principal, Detroit,Tx.
Farmer, Cotton , soybeans, milo, hay
Livestock Producer: Cows and Hogs.
My background: Graduated Crowell High School, (Rolling Plains) Crowell,Tx. Baylor University School of Radiologic Tech. Dallas,Tx.
Radiologic Tech St. Jo's Hosp. Paris,Tx. Aide to Handicapped Children room in Red River Co. co-op Clarksville,Tx.

Chemical exposure: Spraying crops and barnyards.

We have three children and three grandchildren.
Dana
 
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Postby Flabash » Fri Aug 20, 2004 2:16 pm

NAME: Ferol Labash
RELATIONSHIP TO PSP: daughter
PWPSP: mother - Betty
DATE OF BIRTH: 7/31/29
DIAGNOSED: 2002, symptoms a year or two earlier
LOCATION: Northwest Illinois
BACKGROUND:
Mom: Grew up in Indiana; dau. of farmer; one of 12 children. Worked on farm as a child; Office worker; School bus driver (12 yrs.) and antique dealer( 30 yrs.) Symptoms appeared shortly after my father died; Mom was very depressed - wonder if depression plays any role?

Me: Also grew up in Indiana; graduated from Purdue University where I met my husband (of 15 yrs.) left the workforce 11 yrs ago to stay home with children - son, 13, son, 8 and dau.,1. Began in-home daycare 6 yrs ago. Plan on returning to accounting profession when dau. enters kindergarten ( and oldest enters college!)
Flabash
 
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Postby julesann79 » Fri Aug 20, 2004 4:04 pm

NAME;Julie Ann
RELATIONSHIP TO PSP;Daughter
PwPSP;Beryl
DATE OF BIRTH;19/2/35
DIAGNOSED;Jan 2000,symptons from 1997
LOCATION;East Midlands, England
BACKGROUND;45 Years young, married 25 years in November.I have 2 grown up children. I am a sales assistant.
PwPSP BACKGROUND;Worked making leather goods, may have come in contact with chemicals.Her husband [Dad] worked with insulation, possibly asbestos.
julesann79
 
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Postby Nancy Spiekhout » Fri Aug 20, 2004 4:16 pm

Again good idea!

Name: Nancy

Relationship to PSP: Mother with PSP

PwPSP: Alice Wagner

DATE OF BIRTH: 8/6/33

DIAGNOSED: Around 2000 w/ PSP orginally misdiagnosed with Parkison's Disease in 1997. She in the end of Stage 4.

LOCATION: Marine City, Michigan

PWPSP BACKGROUND: Mom was born the 3rd oldest child of 7 children. She and my dad will be married 50 years in January 05. She is mother to 3 children - I'm oldest, my brother who was born Duchene's Muscular Dystrophy and passed away in 1993 and my sister. She worked off and on while we were young at a fence company and then became fulltime care giver of my brother. We live along the US/Canadian border also known as "Chemical Valley" because of the huge industrial plants on the Canadian side of the river. Mom's neurologist says it is an enviromentally caused disease (because it is not genetic related). I wonder if these chemicla plants or huge power plants play into this disease?

My Background: Married 24 years, Mother of 2 teenagers, Engineering Supervisor in the Automotive industry ( Corporate office) have 3 persian cats and a Cairn terrier dog, active with kids and also active with the youth group from church and other church functions. We live 1 mile from Mom and dad so we help out as much as we can with care of mom.

Comment: What a horrible disease! If there is anyway to prevent it and I can help - I want to be a part of what ever it takes. Mom doesn't deserve this!
Nancy Spiekhout
 
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Postby Pauline » Fri Aug 20, 2004 10:50 pm

For daddysgirl,
Welders came in contact with asbestos and I believe that is the reason for that advertisement you heard. My husband was also a welder/pipefitter for James River pulp mill 28 years.
Pauline
Pauline
 
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Postby Pauline » Fri Aug 20, 2004 10:53 pm

katygirl,
Seems as if anyone would get something from playing golf, it would be me. Up until about 10 years ago I played as much as 7 times a week, never less than 3 times a week. However, maybe I don't carry the gene that produces PSP? My ex-husband and I operated a 9-hole golf course; we were there night and day. Think of all the <i>really</i> bad chemicals that are in cigarettes, such as cyanide gas which is the same as used in WWII Germany to exterminate people in the death camps.
Pauline
Pauline
 
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Postby gail ann » Sat Aug 21, 2004 8:50 am

Its great to meet all of you!
Name: Gail

Relationship tp PSP: Mother with PSP

PWPSP: Mary Lendzion

Date of birth: 4-1-24

Diagnosed: 7/04, symptoms since 1999, Parkinsons and Diffused Lewy Body disease were thought to be the diseases.

Location: Rochester Hills, Michigan

Background on PWPSP: Mother was born in DuBois, Pennsylvania in a coal mine. Her parents were immigrants from Alytus, Lithuania. She was one of 7 children, the youngest. The family moved to Hamtramck, Michigan when she was a youngster. She attented Catholic School until high school. She met "the man of her dreams" while being a soda jerk. They took one look at each other and said to others that they would be married one day and they were married 43 years! Mom worked for a short time at Briggs Stadium home of the Detroit Tigers which would be the only connection I know of to chemicals needed to spray the baseball field. Mom and Dad married in 1946 after Dad served in the Navy during WW2. They had 5 children and I am the youngest. Mom has 10 grandchildren and 5 great-grandchildren. Mom was a homemaker her whole life.
My Background: I was married 16 years and had 2 children, now 19 and 14. Divorced and remarried now for 4 years. I am self employed as a housekeeper. I live in beautiful Colorado Springs, Colorado! I have 2 babies, a Chocolate Lab and a Springer Spaniel.
Thanks for letting me share!
gail ann
 
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Postby slitch261 » Wed Sep 15, 2004 9:08 pm

My Dad was diagnosed in 2001, just two year from retirement. Always healthy, most of his life. Know he had a hard life and enlisted during the Viet Nam era and most likely exposed to Agent Orange. Suspect this may have had something to do with it, but then again, he has worked the last 28 years in a cabinet factory in Adrian, MI, could have been exposed to many different chemicals there. Can only hope that is the link, and I won't get this terrible disease.
slitch261
 
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Postby suzy » Wed Sep 15, 2004 9:33 pm

Let's keep AnneRN and others who live in the US Gulf Coast getting hit by Hurricane Ivan in our prayers.
suzy
 
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Postby mythsrs » Wed Sep 15, 2004 10:20 pm

Georgie-
This would be perfect to have as a seperate category, so it is always accessible. I have tried in the past to contact the webmaster to find out how to create one, but no one has ever gotten back to me. Any ideas? It's been really great to have a little more personal history on both the pwpsp and the forum member-
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Postby danielle » Sat Sep 18, 2004 12:45 am

NAME: Danielle
RELATIONSHIP TO PSP: daughter
PwPSP: Susan Imo
DATE OF BIRTH: 05/26/44--Death 8/26/04
DIAGNOSED: No 2 doctors agreed on diagnosis.--Will have diagnosis in 4-6
weeks. She started exhibiting symptoms in August, 2001.
LOCATION: Detroit, Michigan (childhood), then Ida and Monroe, Michigan
BACKGROUND: Mom was married with 3 children. She went back to school at the age of 50 to become a nurse. She had quite a few surgeries in the 70's ( thyroid, hysto, and gallbladder).
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Postby Louberry » Sun Sep 19, 2004 8:29 pm

well, my name is Lisa(Slitch is my sister)
my relationship to PSP is my Dad has it.
Charley is his name.
his birthday is Feb. 4th (ummm, fill in the blank here Sharon)
He was diagnosed in 2001, but had symtoms before that..
He lives near Adrian Michigan, and I am from near Grand Rapids Michigan.

A little background...well, at first they thought he might have Parkinson's because his Dad had it. Like Sharon already stated, he worked at Merilatt's Cabinets for 30 years, so he was exposed to all the chemicals and wood that goes along with making cabinets. He was in the Vietnam War. My Mom is taking care of him as long as her health will allow her to. (talk about taking your marriage vows seriously...it is beautiful thing to watch how much they love each other despite this awful disease)

My background is I am married and have 2 girls(Amanda, my stepdaughter who is 11 and my daughter Rebecca who is 4).

I think we all need to pray for each caregiver...what a blessing they are.

Daughter of Charley,
Lisa
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Postby nicki » Sun Sep 19, 2004 10:31 pm

Name: Nicki
PwPSP: My mother Claudia. Her birthdate: 4-26-38
Diagnosed: 8/2003 She had symptoms for at least 3 to 4 years prior to her diagnosis. Our family attributed early falls and other symptoms to her heavy drinking. After falling and breaking her hip the PSP symptoms were more apparent. Her first diagnosis was "Parkinson Like Symptoms". She received the PSP diagnosis after her vision symptoms appeared.
Background: Spent first 18 years of her life on a wheat ranch in Central Montana. Also spent approx 8 years living in the Central Valley of California. Our house abutted orchards so there was alot of chemical spraying. The rest of her life has been back in Montana, working a desk job and not living on the farm.
Currently: She is a patient in a Nursing Home and is wheelchair bound. She has started to choke on liquids. She speaks softly. Her only confusion at this point is what day it is, month etc. She seems to be Stage 3.
My background: I am 47, married with two wonderful sons. My brother and I live in the same town as my mom and we are very supportive of her and each other. I have another brother who lives out of town and visits when he is able. My mother was a vibrant, busy, very social woman. She still has a great sense of humor. It is sad that so many of her long time friends have drifted away.
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Postby deeo » Mon Sep 20, 2004 1:53 pm

Georgie, this is a great idea. Only caregivers of PSP can know what we are talking about.

Name: Dee

Relationship to PSP: Husband with PSP

PwPSP: Don

Date of Birth: 5-9-37 (age 66)

Diagnosed: Oct. 2000. Symptoms since 1996, maybe earlier
Stage 4

Location: Texas State Veterans Home, Temple,TX Hometown: Cameron,TX located 32 miles from Temple.

Background: Married 46 years. Retired Military. Always preferred working outdoors so was employed on the grounds crew at the VA Hosp. in Temple after retirement. Fully retired in 1993 but stayed busy in his shop and doing yard work - ours and neighbors. Don was raised in central, rural Texas. Served one term in VietNam. As of date, agent orange plays no part in PSP. We have one daughter and 3 grandchildren. I still work but have plans to retire the end of 2005.
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Postby Phyl » Mon Sep 20, 2004 9:47 pm

What a great idea, Georgie!

NAME: Phyl
RELATIONSHIP TO PWPSP: Husband with PSP
PWPSP: Ron George
DATE OF BIRTH: Feb. 15, 1935
DIAGNOSED; JULY, 2001 at Cleveland Clinic
SYMPTOMS SINCE: At least 1995
LOCATION: Leipsic, OH
BACKGROUND: RON -- Born and raised in Ohio. Married for 47 years.
One of 8 children: One brother (Whom doctors suspect died of PSP) three half brothers, one half sister and two step-sisters. Ron is the second eldest. Brother who is deceased was the oldest. Ron was in the Air Force, working with Nuclear Warheads for 7 years. Has been a truck driver ever since. Only hazardous material hauled was Anhydrous Ammonia.

BACKGROUND: Phyl -- Born and raised in Ohio, eldest of four children. Lived in Germany (while Ron was in Air Force) and the USA. Have three children, two sons and a daughter (whom you have met on this forum). Worked as a Dental Assistant, a secretary in high school for 18 years, secretary for an accounting firm, sold Avon, started my own business, with detail work in new construction (painting, staining, varnishing, sanding, wallpapering, etc.) Caregiver to Ron. After Ron had to go to the nursing home, I went back to work (outside the home) for the American Red Cross as the Assistant Director of the Putnam County Chapter. Also serve as Director of Disaster services. Ron and I have seven grandchildren, five girls and two boys, ages 25 - 6. They are the love of our lives! I thank God for our children and grandchildren, who have been so supportive to me during this very difficult time.
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Postby mypaldick » Mon Sep 20, 2004 10:12 pm

Response from Rose
Wife to Dick:
PSP diagnosed in 2002
may have had it 2 years before, seems to be progressing rapidly. Balance much worse this summer, vision problems, photo sensitivity, speech difficulty and coughing frequently. Still walks holding my hand at mall at least 4 times a week. Maintains his sense of humor and good memory.
Worked as a teenager in box factory with acids, coke driver and career in Insurance industry home office.
Married 42 years 4 children age 40 to 31. Children spread from Houston to Chicago. They call dad frequently.
We travel and visit children and babysit grandchildren, new baby this month.
I have nursing background but retired from teaching, currently teach a few classes online. Main goal to make sure we have fun and do as much as Dick can do at this time.
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Postby nokesl » Tue Sep 21, 2004 2:46 am

Thank you all that have posted and to all of those who will post. What a great response and so interested to get a snap shot of everyone.

I would like to try and get this listed as a seperate category and will try to do something about it.

thanks again
Georgie
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Postby Anje » Sat Sep 25, 2004 5:15 am

Name: Anje

Relationship to person with PSP: Granddaughter

Person with PSP: Joseph Campbell

DOB: 6/21 passed away 9/21/1999

Diagnosed: I believe it was fall of 1995 after a fractured hip. Had had symptoms for several years before that.

Location: I live in Troy, Missouri

Background:
Grandpa was in the Army Air Froce during WWII and made his career with Meyers Pumps in Ashland, Ohio in the maintence dept.He had 4 children and was married for 51 1/2 years.

I am single and work as a nurse, Mom and I were recently talking about what might be going on in the world of PSP and once I found your web site I thought I would become involved. I was very involved in Grandpa's care for the last 16 months of his life as he lived with us. I am also interested in learning about what new research is finding.
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Postby nokesl » Mon Sep 27, 2004 4:00 am

Anje, welcome to the forum and thanks for posting. I am sure you will have lot to offer all of us.

I am sorry for the loss of your Grandfather. It's amazing the way PSP just stays with you.

Georgie
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Postby Marg » Mon Sep 27, 2004 7:01 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by nokesl</i>

Anje, welcome to the forum and thanks for posting. I am sure you will have lot to offer all of us.

I am sorry for the loss of your Grandfather. It's amazing the way PSP just stays with you.

Georgie
<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby grandma » Mon Sep 27, 2004 7:08 pm

Anje, welcome to the forum. Sorry for your loss of your grandfather.
I'm sure you will have lots of input to share with us. God bless you and your mom.
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Postby Marg » Mon Sep 27, 2004 7:17 pm

Hi. My name is Margaret

Wife of pwpsp.
pwpsp. Mark 9-29-41 had since 2000
worked for 40 years for machine co. worked in plant. and traveled for feild service all over the world for 10 of those years. was in several third world countries. Live in a large farming community, lots of grain and tons of large chicken koops.Going to Louisville Ky. in Oct. for resrarch with Dr. Litvan. We have 6 pwpsp within 25 miles of us who have psp. They are very interested in the chemical-pesticide theory.
Wife I worked as a beauty salon owner for 25 years and then I worked for Wal-mart for 14 years Am now retired, my husband needs full time care now cannot walk without help. So sad , I enjoy quilting keeps me busy and he enjoys having me close by
We have 4 grown children and 8 grandchildren and they are all close by and help a lot one is also a nurse.
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Postby daddysgirl » Mon Sep 27, 2004 10:15 pm

Margaret ...

This is a little off the "Who are we" subject, but I wanted to respond to your posting. Below is an excerpt from a posting that I did on a previous topic started by rhondascissorhands. I found it very intriguing, and it would be very interesting if those in your area could possibly have been affected by the effects of Manganese poisoning:

<i>Rhonda .. it was on Channel 11. I saw the promo, but forgot to watch the news. A lady at work was telling me about it and then she did some research and came back to my desk. She brought me an article on Manganism, Welder's Disease. Daddy was a welder practically his whole working life. Manganism is also called Welders Disease because of the high incidence in welders and those exposed to the Manganese fumes from welding rods.

In addition to welding, on the job exposure to manganese occurs mainly in mining, alloy production, processing and work with agrochemicals. Manganese also enters the air from iron, steel and power plants. Those who are at the greatest risk of this airborne exposure are welders, railroad workers, miners, steel workers and those who handle pesticides containing maneb and mancozeb. Heavy manganese exposure over years will take its toll on a part of the brain called the basal ganglia. I remember seeing the basal ganglia mentioned in previous PSP research.

What's really freaky to me is the list of known symptoms that may be caused by past exposure :::

Tremors; shaky movements
Impaired hand-eye coordination
Difficulty walking; clumsiness
Loss of motor skills
Slurred speech or lack of facial expression
Weakness and tiredness; mood problems

There have been questions on this forum about pesticides, people that worked in paper mills, etc ... It would be interesting to see how many PWPSP would have possibly been exposed to Manganese. I know there was a subject on smoking. I remember always hearing that cigarettes were made up by multiple components. I wonder if Manganese is one ?!?!?</i>

If we could only find the common factor for those that become afflicted with PSP .... maybe then, the powers that be could come up with some form of treatment, or better yet a cure !!!

Take care .. [:)]
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Postby MomWPSP » Wed Sep 29, 2004 12:13 pm

I've know about the Society for PSP for years but only just discovered the Forum last week and have benefited much from it. The first day I visited the Forum I cried so much because I identified with everyone's struggle, yet I also felt comforted knowing we're not alone in the frustration and the guilt and the anger and the sadness.

Here's my info:

NAME: Mindy
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Winnie
DATE OF BIRTH: 3/31/33
DIAGNOSED: 1/15/2001 (my birthday) symptoms since 2000 (maybe earlier)
LOCATION: Mom in Diamond Bar, CA, me in Phoenix, AZ
BACKGROUND: Dad is the primary caretaker at home. We also usually have a live-in help to take care of Mom, though they don't stay very long, so we've gone thru many over the years and are currently looking for a replacement. Mom and Dad used to love to travel globally but have not done so lately since Mom's condition has deteriorated over the years. Mom just came home from a 3 month stay at the hospital with 2 major operations (for intestinal blockage, 2nd surgery took 8+ hours to undo the bungled first one), we came close to losing her a couple of times but fortunately she pulled thru. She had a feeding tube put in a couple of weeks ago when her doctor decided she had problem swallowing (she seemed to do ok when we fed her but choked when the doctor tried to feed her). She has all the symptoms described here on the forum: unable to walk on her own, walk a short distance with support, wheel chair bound, more comfortable lying down, wears diaper, drools, echoes, unable to initiate sentences, able to utter one or two words at a time at best. She also has diabetes and glaucoma on top of PSP. She has 3 daughters and 2 sons who love her dearly. When she became ill, before she was diagnosed, my older brother decided it was his duty as the oldest son to take care of them, he sold his house, helped my parents sell theirs and bought a bigger house so they can live together. My older sisters live close by so they visit her weekly. My younger brother, the baby of the family (at 40) lives in San Jose and visits Mom and Dad every month. I live in Phoenix with my husband and 2 young girls (5 & 7) and visited every 2 - 3 months but have decided to make it monthly after the recent health scare. My next scheduled visit is end of October to attend the Family conference on PSP in San Diego, hope to see some of you there... think of us... as we think of you often...
MomWPSP
 
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Postby nokesl » Thu Sep 30, 2004 3:04 am

Mindy, welcome to the forum, I am sorry you have to be here. I hope you will find the kind of support here that you need. We are always ready to help.

thanks for posting
Georgie
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Postby nokesl » Wed Oct 13, 2004 3:11 am

Bumping this up so that others may contribute.

Georgie[:)]
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Postby Bthy » Wed Oct 13, 2004 1:41 pm

Hi Georgie,
Thanks for bumping up this topic. I read the forum posts religiously, every single day, but because this is all so new to me, I very seldom post. Here's my contribution to your list.

NAME: Marybeth
RELATIONSHIP TO PSP: Daughter
PwPSP: John
DIAGNOSED: July 2004 with symptoms since 1999???
LOCATION: Boston, Massachusetts
BACKGROUND: My Father is 77 years old, Married with 4 grown children. I am 38 years old and live at home with my parents as my father's primary caregiver. He worked in a restaurant in Boston for many many years where he handled tons of fresh fruit & produce and he also worked in maintenance at Honeywell where he was exposed to cleaning agents & other chemicals. He was a weekend cigar smoker for a few years.

So there you have it.
I'll do my best to "keep posting" [;)]
Thanks again, Marybeth
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Postby Mike » Thu Oct 14, 2004 3:13 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by nokesl</i>
You know of course that this information is readily available to us by selecting the profile.
There are so many of us here, some that post regularly and some once in a while, new comers arriving all the time. I wondered if anyone would be interested in joining me in creating a kind of register here on the forum. Just a few simple questions with no obligation to answer anything you didn't want to. I'll start, feel free to add.

NAME: Georgie
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Mary Vincent
DATE OF BIRTH: 3/7/37
DIAGNOSED: 12/8/03 symptoms since 1999 now stage 3
LOCATION: West Midlands, England
BACKGROUND: Mother is divorced, 3 children. Worked as a seamstress, cleaner (while children were little), Rep for a company supplying plants to supermarkets, hairdresser, retired.

<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby nokesl » Mon Nov 01, 2004 3:44 am

Bumping this up for newbies
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Postby mcwells » Tue Nov 02, 2004 3:24 pm

NAME: Carol
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Marialice Renard
DATE OF BIRTH: 1/1/26
DIAGNOSED: 3/04, with symptoms for about 3 years before. Initially diagnosed as Parkinsons in 2003.
LOCATION: Lincoln Nebraska
PwPSP BACKGROUND: Mom grew up around agriculture, although not directly on a farm. Dad had a small business for 20 years, a chicken hatchery and selling pesticides (he died in 1983 from leukemia...his doctors felt that exposure to agrochemicals was a major factor). Mom helped in the business quite a bit. After Dad sold the business, Mom worked at a University, in an old building that had asbestos (before they knew better, she still worked in the building while they removed the asbestos!) Smoker for maybe 20 years.
MY BACKGROUND: youngest of 3 girls, only one living in the same town as Mom. Married for 22 years, we have one daughter adopted from China, and will be returning soon to adopt a boy. I'm a web designer and help professors with distance education.
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Postby Elise » Wed Nov 03, 2004 3:21 pm

hope there is room for me here too!
My name - Kathy
Relationship t PSP - daughter
PwPSP Mother- Muriel
Location- South west England
Muriel born 1919 - now 85yrs
Diagnosis - first thought to have Parkinsons (my father died with this) but later thought to be depression - further diagnosed immediately after seeking neuro consult with PSP in 2001 - thought to have symptoms since 1998 - 7yrs. currently seems to be in stage 4 on a slow spiral down but very stoic .
My background - retired from paid work in 2001 to concentrate on mother who lives with me and my husband - along with 2 horses,2 donkeys,1 dog,4 cats, 7 chickens but not all under same roof!
Poss relevant history - mother had broken hip in approx1996 with2 further ops to correct orig surgey and then we nearly lost her with a burst duodenal ulcer and major blood loss - so at least 4 long anaesthetics in short space - she also fell over and broke her nose during this time - does trauma play any part in all this i wonder ?
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Postby daddysgirl » Thu Nov 04, 2004 9:37 am

Kathy ... of course there's room on here for you. Although I wish we didn't have to meet this way [:(], welcome to the family.

I firmly believe that trauma can be a contributing factor to PSP .. at least to the onset of it. My dad had cancer surgery in November 1999, followed by many grueling radiation treatments. In the few years following his surgery we started to notice a difference in my dad. He would fall, his vision was a problem, his speech was slurred ... HHHUUUMMMMM ?!?!? The doctors thought that he might have had a slight stroke or that they might have accidentally zapped his brain stem when they were doing the radiation. Ultimately, in August 2002 he was diagnosed with PSP. There have been many others on this forum that have mentioned that they noticed changes and early symptoms in their PWPSP after an accident, surgery, etc...

My dad's in the hospital for the 3rd time in 4 months with pneumonia. We know they say that ultimately that is what most PWPSP will succumb to. I'm changing my dad's name to Rocky though, he has fought back everytime and amazes us with his will to live. Three times now he's basically been proclaimed to be on his death bed, but if he could talk he'd be saying "Ha Ha ... you're not getting rid of me that easily". His suffering with this disease is a 1000 times worse than ours, but we're dying right along with him. We wonder how much more he can take, or for that matter, how much more we can. When Daddy was admitted to the hospital Sunday, he weighed a mere 94 pounds ... it absolutely breaks my heart to see him as basically nothing more than a skeleton. Once they were able to get some fluids into him, he's gained a little, but he's a long way from ever looking again like the Daddy I remember from years ago.

As long as he fights this disease, we'll continue to stand by his side, hold his hand and tell him how much we love him.

Take care ... [:)]
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Postby smiles4u » Fri Nov 05, 2004 3:52 pm

NAME: Rose
RELATIONSHIP TO PSP: daughter
PWPSP: Virginia
DATE OF BIRTH: 3/6/1923 Rivervale, IN
DIAGNOSED: Fall of 2000
LOCATION: South Central Florida

PWPSP BACKGROUND: Virginia was born on her family homestead and lived on the farm until she went off to college. Graduated from a Business College. Worked as a bookkeeper and later in life sold RealEstate. Met her future husband in 1943 just before he went overseas into WWII. They married in 1946, had two live births (daughters - myself (the oldest) and my sister (who lives in NJ). We lived in Indiana, Massachusetts, Michigan, Nevada and finally moved to Florida in 1967. Retired from RE in 1986. Was married for 58 years to the love of her life (we just lost dad in June of 2004). Mom began falling in 1991 and I took her for all kinds of tests over the years. They put a heart monitor on her 3 times over the early years, did a few different kinds of scans, blood work, psycological testing, etc. In 1997 she was diagnosed Atypical Parkinsons. 1999 w/Parkinsons dementia. October 2000 diagnosed PSP (this diagnosis actually fit what her symptoms had been up to that point). I can't say which was worse - the frustration of not knowing what the problem was or finally knowing with the knowledge of the outcome. Once we knew what we were facing we had a family meeting in December of 2000 and all discussed the feeding tube issue and decided on how we would handle this. Back in 1996 both mom & dad had done their living wills and dpoa and set up their trust and made funeral arrangements. So the only thing we had to change was that mom did agree to a feeding tube. We inserted a G-tube in June of 2004.

Mom was always full of life and enjoyed her family. She was always loving and caring and gentle and kind. She was always up for and adventure. She was always very artsy and loved to paint and make beautiful things with her hands. She also loved to cook delicious meals for her family and friends. In 1996 mom stopped painting and making her crafts. She could no longer cook a full meal or balance a checkbook by late 1997. She could no longer walk without the assistance of an arm or walker by 1999. She needed assistance with all aspects of personal care by early 2000. By June of 2002 she could no longer read a short story to her great grandchild. By summer of 2003 she could no longer sit herself up. By Sept of 2003 mom was in a wheelchair. By December of 2003 she could no longer feed herself or brush her own teeth. Three days before my dad passed in June 2004 we had the G-tube inserted because mom could no longer take food or drink by mouth without chocking. This horrible disease has robbed her of all her independence. Mother has always had the most beautiful smile (which is very difficult for her to do these days).

MY BACKGROUND: Born a Hoosier in July of 1952. Moved around with parents and settled in FL. Married a Cracker, we have a daughter (Angel) and two beautiful grandchildren (ages 3 & 5). I was a stay at home mom until our daughter hit middle school. Then I began working part time (filled in for vacations) at a local attorneys office as secretary and the Board of Realtors and a RealEstate office as bookkeeper. Then, in 1987 I went to work full time (10 years) at a local citrus company and worked as Plant Safety Coordinator, went to Human Resources and ended my career as their Sales Contract Administrator. Then in 1997 had to go to limited time (I worked when mom wasn't living with us) then I had to quit in 1999 to attend to full time family matters. Mom moved in with us full time the spring of 2002. We moved from town the fall of 2002 out to a rural community with wonderful neighbors. We live on a canal to the best fishing lake in FL (Istokpoga) surrounded by beautiful birds and lots of wildlife. We live in paradise, which is a great place to be - it is our own little year round vacation spot. God blessed me with a wonderful, caring husband. He loves my mother and is a great help. He helps with mom and feeds her so I can get away for a few hours on a Saturday or Sunday. He does the grocery shopping on his way home from work. He helps around the house and takes us out on the pontoon boat when it's not too hot. (Mom loves being out on the water)

Mom and I spent alot of time together in my adult years. We did craft and antique shows together and cooked together and always shopped together. I really miss my mom. I know she's still in there but she's getting harder and harder to see.

I'm really glad I found this forum. It will be good to have a place to vent and share info. Unless you live it day to day you just don't really know how heartbreaking this is.
smiles4u
 
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Postby nokesl » Mon Nov 08, 2004 3:50 am

Smiles4u, welcome to the forum, you paint a very real picture of life in your part of the world. I am sorry you have to part of PSP.

Take care & keep posting
Georgie
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Postby leiber » Thu Dec 02, 2004 12:43 am

NAME: Tammy...I apologize for the length of the post....this is my first post....and probably not my last.
RELATIONSHIP TO PSP: father with PSP
PwPSP: Joe
DATE OF BIRTH: 11/4/29
DIAGNOSED: About 4 years ago, but symptoms began in 1998 after a mild heart attack. Currently in advanced stages.
LOCATION: Northwest of Houston
PwPSP BACKGROUND: Dad has been on a farm/ranch all of his life. Has been exposed to all kinds of ag. chemicals...cattle sprays, cotton poisons,etc. He served in the Army in Japan in the early '50's.(exposure to radiation after the atomic bomb???).In the 1990's he began having trouble walking and would roll his feet out to try to stay balanced. Falls began and then it seemed to me that after the mild heart attack, things progressed rapidly. He first thought he had had a slight stroke on one side and things seemed to snowball from there. Visits to many different doctors and several misdiagnosis eventually resulted in the PSP diagnosis. Daddy still is at home and my mother is the primary caregiver...which is certainly a challenging job. He is not an easy patient to care for....pretty demanding and seems to always want something. Daddy can no longer walk, his speech is weak and slurred, eating and swallowing are difficult.My mother had just retired from her job when my father's condition seemed to worsen, so she hasn't really had a retirement. My father is definitely a fighter and refuses to give up. They will be celebrating their 50th wedding anniversary in two weeks. He has been looking foward to having a big celebration with about 300 people invited.
MY BACKGROUND: I am a junior high history teacher(26 years) and the eldest of two girls. I am married and have two children...both are in college. My husband has been of great help to my mom and dad. I try to help when ever and however I can, but I always feel that I am not doing enough.

My father has received alot of help from the Veteran's Administration and I encourage anyone who is elegible for VA benefits to take advantage of them. Daddy gets all of his medicine very inexpensively and has gotten a power scooter with a car lift, as well as a wheelchair, potty chair etc....
leiber
 
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Postby daddysgirl » Thu Dec 02, 2004 2:05 am

Tammy ...

First of all, welcome to the family that none of us want to be a part of. Secondly, there's no need to apologize for the length of your post. If you scan the many posts on this forum you will see some books and then you'll see some one-liners. This forum is a place for you to come to for support, answers, love ... a place to laugh, a place to cry and most therapeutically, a place to VENT. I've done my share in the past, as have many others.

One thing that some PWPSP have mentioned in the past is that it is easier to read the posts when they are broken up into smaller paragraphs, versus one continuous one.

I see you're a "neighbor". I'm a native Houstonian. My PWPSP is my dad (71 years young), who is in the latter stages of the disease (from what we can tell). He's been in a nursing home for the last year and a half and has had pneumonia 3 times in the last 4 months. Our lives the last 18 months have been to work during the week and then drive to Wharton on the weekends, which is where Daddy's nursing home is.

I don't know if you are aware of the support group that we have here in Houston. We normally meet on the 3rd Saturday of each month at 1:00 at Southwest Memorial. I'm not sure though, when our meeting will be this month. Our leader, Karen Kennemer, lost her sister to PSP in 2000 and she is an awesome, inspiring leader. If you are interested in attending our meetings, or if you need to talk, feel free to e-mail me at mauisunset94@yahoo.com

The PSP journey is one filled with many emotions. Things that others would see as nothing, become precious memories. It's honestly kinda hard sometimes to remember my dad before PSP. This nasty disease took the wind out of the sails of one of the most loving, kind hearted souls that I've ever had the great fortune to know. My daddy was my first love. I guess I took after my mom. She knew when she was nine years old and saw him for the first time that he was the one for her. She never dated anyone else and blessedly, they celebrated their 50th Wedding Anniversay in April of this year, with 245 people in attendance. I'm so glad that your parents are celebrating as well. Granted, it was not how either of them ever imaged that the day would be. Seeing my mom turn my dad's wheelchair around the middle of the dance floor for "their dance" brought tears to many eyes. Especially mine when I heard the song they were "dancing" to was Eidelweiss. Even if your parents were the only ones to show up for the celebration, they should feel blessed that they have made it together for 50 years and are able to share their love.

I just realized it's 1:15 in the morning. I guess I better get some sleep before going to work tomorrow.

Take care of yourself ... welcome again ... and please come back whenever you need an ear or a shoulder. You'll find that those on the forum are always willing to listen and will be there for you to lean on.
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Postby nokesl » Thu Dec 02, 2004 3:41 am

Hey Laura, you said it all.

Tammy welcome to the forum, I am sorry you have to be here, I hope you will find all the information and support you need here.

You and Laura seem to have a lot in common, I hope that will help. Unfortunately you will find a lot of people here with a lot in common.

take care & keep posting
Georgie
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Postby jz » Sat Dec 04, 2004 10:28 pm

Smiles4u, I like that user name, it sure makes me smile when I see it.

It sounds like you've been thru a tough time with your mom. It doesn't get any easier, does it. Some days my mom struggles just to talk, when I see her and she looks at me, her eyes say it all.

Such a sad disease. Like you and many others in the forum, I know my mom is 'still in there too'.....even when she drifts or plays with her sifter to strengthen her hand muscles. I know she's in there and being with her is such treasured time. Unfortunately, I live 300 miles from her, so I dont' get to see and treasure her on a daily basis. But, I do call her and I know she's there, even with her whisper, she tries to talk to me.

I just wanted to reply to your post, cause psp is a heartbreaker. Sometimes I think that when my mother goes, I probably will too just from the heartbreak of losing her. Even with her having psp, I will miss her. I already do!

julie z - chicago, il
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Postby nokesl » Tue Dec 21, 2004 9:11 am

Bumping up for anyone wanting to include their details.

thanks
Georgie
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Postby jz » Sun Jan 02, 2005 9:18 pm

Another "bump" for anyone who wishes to share their situation with us.
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Postby testros05 » Mon Jan 03, 2005 7:28 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by nokesl</i>

There are so many of us here, some that post regularly and some once in a while, new comers arriving all the time. I wondered if anyone would be interested in joining me in creating a kind of register here on the forum. Just a few simple questions with no obligation to answer anything you didn't want to. I'll start, feel free to add.

NAME: Georgie
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Mary Vincent
DATE OF BIRTH: 3/7/37
DIAGNOSED: 12/8/03 symptoms since 1999 now stage 3
LOCATION: West Midlands, England
BACKGROUND: Mother is divorced, 3 children. Worked as a seamstress, cleaner (while children were little), Rep for a company supplying plants to supermarkets, hairdresser, retired.

<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">Name: Fred
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Postby testros05 » Mon Jan 03, 2005 7:31 pm

Name: Fred<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by nokesl</i>

There are so many of us here, some that post regularly and some once in a while, new comers arriving all the time. I wondered if anyone would be interested in joining me in creating a kind of register here on the forum. Just a few simple questions with no obligation to answer anything you didn't want to. I'll start, feel free to add.

NAME: Georgie
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Mary Vincent
DATE OF BIRTH: 3/7/37
DIAGNOSED: 12/8/03 symptoms since 1999 now stage 3
LOCATION: West Midlands, England
BACKGROUND: Mother is divorced, 3 children. Worked as a seamstress, cleaner (while children were little), Rep for a company supplying plants to supermarkets, hairdresser, retired.

<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby testros05 » Mon Jan 03, 2005 8:12 pm

Name: Fred
Patient: Elena
Relationship to Pt: husband for 25 yrs
Profile of Elena: Born in the Philippines May 24,1952.Was a housewife and a physician in the Philippines then she immigrated to U.S.A. in 1991.Worked in California as a Registered Physical Therapist till 2000. Had hysterectomy for uterine fibroid in 2000 and since then developed symptoms of blepharospasm,stress incontinence,anxiety and depression, slow and difficulty in writing which progressed to staggering gait.Was diagnosed that time with depression by the first neurologist and a year later with PSP by the second neurologist.Two years ago a third neurologist told us that it is not PSP even though she has all the symptoms of PSP but no loss in upward or downward gaze and labeled her Parkinson Plus. Now she is wheelchair bound with maximal support in standing and transfers,difficulty in swallowing,speech reduce to a whisper, constant drolling,emotional and personality changes.
Profile of Fred:Born in the Philippines 1950.Immigrated to U.S.1985 and worked as Registered Nurse to present. An officer of the U.S.Army Reserve
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Postby hlnpok69 » Mon Jan 03, 2005 11:17 pm

Hello, I am new to this forum. My Father has not yet been diagnosed with the PSP disease, but I feel that he definitely has it. My parents live in Florida, and I am in NY so it is difficult for me to see him and his condition in person. My mom has told me how bad it can get for her, being his caregiver. My dad was diagnosed with a mini-stroke about 6 years ago and then shortly after that he changed, and was then diagnosed with Parkinson's disease. Since there move to Florida almost 5 years ago, he has gotten progressively worse, faster than Parkinson's disease usually can get. He went back to the Dr. and was told that he has Parkinsonism, which is actually worse than the actual Parkinson's Disease. I still can't understand this myself, but after reading a recent article in our local newspaper about PSP, I called my mom and told her to check into it and she said she was going to. I have an awful feeling that this may be what my dad has. He has some of the symptoms, like the balance, choking, swallowing is getting harder, stiffness in face, no facial expressions, has a hard time speaking at times. He is medicated by the meds for PD so he is okay sometimes, but when it wears off, it can be very bad. He is 68 years old, and has always been athletic and a hard worker as a butcher. I just wish that they will look into the possibility of him having this disease, for a piece of mind, instead of guessing all the time.
I'm sorry if I posted a long post, and I hope it is okay to be here even though my dad has not officially been DX'd with PSP.
Thank you in advance for any support you can give me.
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Postby grandma » Tue Jan 04, 2005 6:11 am

Holly, welcome, sorry you have to be here. You will find this group of people to be very supportive. It doesn't matter that your dad hasn't been dx yet. You are very smart to have given your mom info on this disease. Come and vent as often as you like.We are here for each other. Where in Fl are your parents? I ask because I live in Florida and my mom is in New Hampshire, kind of the reverse of you. Keep us posted.
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Postby hlnpok69 » Tue Jan 04, 2005 11:37 am

Thank you for the warm greeting, my parents live in Spring Hill Fl. about 45 minutes above Tampa. I told my mom to check into all the possibilities of my dad having this disease. I am glad that I can come here for information and to vent too! I have been reading a lot of the other posts and what I have been reading sounds just like my dad but not to the extreme stage yet. where can I find out the stages of the disease? I see some people saying the stages that their loved ones are in, like 3/4 or 5, how can I get that info, I haven't located that on the website.
Any info would be helpful!
Thank you,
Holly
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Postby grandma » Tue Jan 04, 2005 4:04 pm

Here is a great site that will help with some of the many questions that you have. Hope this helps.
http://www.pspinformation.com/disease/psp/stages.shtml
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Postby Number8 » Tue Jan 04, 2005 5:41 pm

NAME: Mary
RELATIONSHIP TO PSP: Daughter
PwPSP: Mary
DATE OF BIRTH: 02/02/20
DIAGNOSED: Fall of 2004
LOCATION: Billerica, Massachusetts
BACKGROUND:Mom is a widow. Dad died in 1996. They had been married for 53 years. She was born in Nova Scotia and came to the US at the age of 6. She has 11 children (7 girls/4 boys). I am child number 8. Mom's health has been pretty good up until recently. She was a stay at home mom but did have a few different jobs before she married (none involving chemicals). Mom never smoked but Dad did. When my youngest sister became ill, around 25 or so years ago, Mom started reading up on nutrition. She started us all taking vitamins and cutting the dyes,preservatives, artificial ingredients etc. I wonder if this has helped it holding off her PSP until she was in her 80's.
The only other medical issue that mom has is she slipped on the ice and broke her shoulder about 4 years ago. She has a titanium (she is allergic to metal) replacement.
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Postby Marsha » Fri Jan 14, 2005 4:36 pm

What a great idea!

Name: Marsha
Relationship to PSP: Daughter
PwPSP: Betty
Date of Birth: Feb. 17, 1929
Diagnosed: Jan. 12, 2005
Location: Toronto, Canada
Background: Mom is widowed 6 years. Mom and Dad had 5 children, 4 girls/1boy. I'm number 2. Mom survived breast cancer about 40+ years ago. Before chemo and radiation. Mom never smoked but the rest of us did. Most of us have already quit. Mom had noticed that her handwriting was not normal just about a year ago. At that time she was complaining that she couldn't see right with her new glasses. She had always been a very independant woman. She drove herself to all her favourite grocery stores, made sure her nails were done and her hair was combed. With 5 kids,14 grandchildren and 5 great-grandchildren she was always running somewhere.She tried driving herself to the hairdresser once but didn't feel comfortable. She hasn't driven since and we sold her car last month. Mom had double by-pass surgery in March/04. By June/04 she was walking with a cane and since about Aug./Sept she is using a walker. Her eye movement is worse and she has trouble feeding herself soup. She continues to live at home with a caregiver from Monday to Friday but she is alone for the weekend. I think this will change soon too. I'll need lots of help to get through this.
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Postby Linda T » Fri Jan 14, 2005 6:43 pm

Name; Linda
PWPSP Mothers
same as Marsha above,
I am one of her sisters #4 to be exact of the 5 children.
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Postby meme » Mon Jan 17, 2005 3:48 pm

Name: Tammy
Relationship to PSP: mother with PSP
PwPSP: Marie
Date of Birth: 10-07-1926
Diagnosed: Aug. 2004, stage 3 or possibly 4
Location: Georgia
Background: Mother is widowed for 16 years now and just recently had to leave her home to live in an assisted living facility. Worked hard all her life and now has to work really hard just to make it through the day.
Thanks
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Postby JudyT » Tue Jan 18, 2005 11:21 am

This is great - we keep thinking there has to be a connection somewhere as to why folks get PSP. Thanks!
NAME: Judy T
RELATIONSHIP TO PSP: Father has PSP
PwPSP: R. Schalcher
DATE OF BIRTH: 11/21/1925
DIAGNOSED: Spring of 1999
LOCATION: Pennsylvania, USA
BACKGROUND: Served in Navy in Pearl Harbor (towards end of war). Was an auto mechanic for many years. Retired and worked as a stock room manager at a local college. Symptoms began with falling and forgetfulness. Currently has all symptoms present. Married with two grown children. Wife is primary caregiver.
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Postby Nancy123 » Fri Feb 04, 2005 1:07 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by Pauline</i>

Name: Pauline Sodermark
Relation to PwPSP: wife (married 8 yrs)
PwPSP: Linwood "Greg" Hildreth
Date of Birth: Feb 18, 1942
Diagnosed: Symptoms began 1999; diagnosed July 2001, Stage unknown - does not fit profile of any particular Stage
Location: Corinth, Maine
Background: Greg: Born in mill town (Old Town, Maine), lived across river from pulp mill or close proximity for 46 years; worked in woolen mill, shoe manufacturing, & pulp mill 34 years total (26 pulp mill); divorced w/2 children, married & divorced w/1 adopted child; took up running at 45 yrs of age, competed in marathons, ran Boston Marathon twice & did all 27 miles both times; married Pauline in 1996;
Pauline: Born in Corinth same house as we live now; married/divorced w/NO children; remarried 1996. Worked for car dealers, civilian employee US Army 8 yrs, USAF 5 yrs, Federal Aviation Admin 19 years. Retired Air Traffic Controller in '98.

<u><b>What I would like to see happen: </b></u>Poll all members of the forum to try to figure out what chemical [}:)] may have triggered this PSP gene to become active in their loved ones.

Pauline

<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby Nancy123 » Fri Feb 04, 2005 1:19 pm

My father has been diagnosed with PSP.He has slurred speech, falls backward alot, coughs when he drinks water ect. His eyesight is also caving in-hard to see up or down. He has always kept very fit-played hockey until 4 years ago-just turned 72. I'm interested in finding out if there is a connection between this disease and exposure to chemicals. Dad worked in a pulp mill for a short time where he had to walk thru the sludge in tanks and was exposed to chlorine bleach.My Mom said his work clothes smelled of chlorine when he came home from work. He also was exposed to the chemical ammonia(I think) worked with blue-print machines.I don't know if he worked with pesticides as well when he helped on his uncles farm for many years.This discussion forum has been very helpful.
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Postby simasmom » Fri Feb 04, 2005 4:42 pm

Hi : My name is Barbara.My PWPSP is my husband Marshall dx 1 / 03/05. age 63. Our daughter Sima also posts in the forum.Marshall spent 22 years in the U.S. Navy on nuclear submarines. He also did welding for a time. In fact we thought he might have magnesium poisioning from the welding & had his blood checked for that during our search for a diagnosis. After retiring from the Navy , he worked in the Charleston Naval Shipyard as a marine electrician for 12 years until it was closed . He then worked as a maintenance electrician at Reynolds Army Hospital in Lawton OK for 8 years until he retired from there in 2002. He has been exposed to some radiation , asbestos & Lord knows what else during his naval career. Back in the 60's they weren't as careful as they are now about exposure to hazardous materials.As to pesticides, only the amount we have used over the years in gardening & lawn care. He has most of the characteristics of stage 2 and looking back ,he has had some symptoms since about 95 0r 96.Symptoms that you would dismiss until you know about PSP.He began worsening in 2001.We live in Southeast Georgia.We moved back to our hometown to look after my 92 year old widowed Aunt who has no children & is like a second Mother to me .Also my Father-in-law who is 87 & a widower. My husband is an only child. My Aunt & FIL both still live independently , but need a some help now & again.Our eldest son died in March 2004 with Glioblastoma Multiforme, which is a fast-moving brain cancer. No other PSP in the family that we know of, but one of Marshall's first cousins has Parkinsons.
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Postby snoopy47 » Sat Feb 05, 2005 8:13 pm

Wonderful idea!
Name: Ervin George Fox
Relationship to PSP: wife
PwPSP:husband
Birthdate: 10/4/45
Diagnosed: 2001 with Parkinson 2002 with PSP
Location: Mason, Michigan
Background: Furnace technician, salesman for Air Conditioning and Furnaces. Lives down hill from farm and used chemicals (pesticides) for the yard in recent years.
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Postby tigerlily » Mon Feb 07, 2005 8:35 am

I am so glad you are doing this! I really want to get to the bottom of what causes this disease - for my own peace of mind and so maybe we can fight it!

NAME Stephanie
RELATIONSHIP TO PWPSP daughter
PWPSP Dave
DOB 9/1/1933
diagnosed summer 2001, showed symptoms around 2000 after prostate surgery
LOCATION Winston-Salem, NC
MY BACKGROUND Age 29, (I think I'm the youngest here), youngest of 3, oldest brother passed away from type 1 diabetes 1994. I've been married 5 1/2 years, we have a cat and we're thinking about kids. I have my MS/EdS in marriage and family counseling - I decided to take a break because the job is so emotionally draining and so is my life! Now I work part time as a costumed interpreter giving tours to school kids at historic Old Salem. I love this job!
PWPSP BACKGROUND Dad was born and brought up in rural Oklahoma, next to the youngest of 9. His father, among other jobs, ran a "produce house" or farmer's market. Dad earned his way through college working summers in the oil fields in Texas. He served in the Army 1956-1958 in the chemical unit. He worked more than 30 years as a manufacturing engineer. When he worked at GE in the 60's he was exposed to agent orange. The job he had the longest and eventually retired from involved making turban blades used in nuclear reactors. I know he was around welding when he went out on the plant floor. I'm not sure what else he was exposed to. He has an older brother with Parkinson's. He was so active and vital until after his prostate treatment. Never took a sick day from work. I used to say he was going to live to be 100.
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Postby katygirl » Thu Jul 28, 2005 4:05 pm

Bumping up this topic for some of our newer members!

Cindy
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Postby Bigsister » Thu Jul 28, 2005 7:25 pm

NAME: Jennifer
RELATIONSHIP TO PSP: Father with PSP
PwPSP: John
DATE OF BIRTH: 8/20/37
DIAGNOSED: Finally diagnosed the beginning of 2005 after many different diagnosis (mini-strokes, schizophrenia, parkinson's, small vessel disease, depression, etc.)
LOCATION: New Jersey
BACKGROUND: Father is now retired, mostly because he can't work anymore. Worked on Wall St. Married with 5 grown children and lots of grandkids. Recovered alcoholic. Ex-smoker. Use to spend every weekend fishing.
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Postby Jeanie Kelley » Thu Jul 28, 2005 8:00 pm

I have been reading and posting for some time now and didn't realize we had this topic. It is great to get to know our friends better.

NAME:Jeanie Kelley
RELATION TO PwPSP: Husband, Tom (married almost 49 years)
DATE OF BIRTH: 7-19-1936
DIAGNOSED: first with Alzheimers, 7-2003, then PSP 1-2004 at Southwestern Medical School, Dallas, Texas
BACKGROUND: Tom was born in Waxahachie, Texas, the second of two children. His mother had Alzheimers. He was a civil engineer planning and building roads, bridges and tunnels in the Dallas area. He was often on the job sites ingesting fumes,etc.
He was a heavy smoker for 30 years.
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Postby vickishack » Thu Jul 28, 2005 10:08 pm

Name: Vicki

Relationship to PSP: Mother-in-law with PSP

PwPSP: Mickey

DATE OF BIRTH: 9/23/35

DIAGNOSED: Around 2004 w/ PSP

LOCATION: Oklahoma City

PWPSP BACKGROUND: Mom has been married to Dad for 53 years (the sweetest love story!) She has taken care of herself for her entire life. Had a hysterectomy in her 20's and went on to adopt a daughter and a son. She taught aerobics until she was 67 and by then her symptoms were to many to hide. She now lives in a nursing home and seems to be rapidly declining.

My Background: Married to my husband for 10 years. 3 kids (a daughter 8, son 6, son 3) My husband is a worship pastor at our church, I am a homemaker and homeschooling Mom. We were blessed to be called to a church close to home 5 years ago before Mom's symptoms began to be enough that she couldn't ignore them anymore. Although this is a horrible time for her and us, I count it a blessing to watch my children learn to care for family and love their grandparents through this time.
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Postby eplowman » Fri Jul 29, 2005 1:57 pm

Neat idea!

<b>NAME</b> ~ Edward Plowman

<b>RELATIONSHIP TO PSP </b>~ Husband of patient with PSP

<b>PERSON WITH PSP </b>~ Rose Plowman

<b>DATE OF BIRTH </b>~ Sept. 13, 1930 (Rose)

<b>DIAGNOSED</b> ~ August 1999, with symptoms dating back several years before that. Now (mid-2005) straddling Stages 3 and 4. She had to quit driving soon after diagnosis, and that was a major blow.

<b>LOCATION</b> ~ D.C. suburbs of No. Virginia

<b>MY BACKGROUND </b>~ Born in Hanover, Pa.; Army/Air Force brat, lived all over. Settled in Bristol, Pa. College in Phila. and suburban Chicago, seminary in Dallas, youth pastor in San Diego 2 yrs, senior pastor in San Francisco 10 yrs, news editor and senior editor for various national publications 30+ yrs (still a staff senior writer part-time), communications exec in England and the Netherlands 8 yrs; have traveled and covered news in print and on radio in 65 countries; have been ad adjunct professor of journalism and visiting lecturer at a number of colleges and universities.

<b>BACKGROUND ON PWPSP </b>~ Rose was born and grew up in Bristol, Pa. During summer months, she swam often in the tidal waters of the polluted Delaware River down the street from her home and about a mile north of the Rohm and Haas chemical company. She never smoked, was rarely in smoke-filled offices. Did little gardening other than lavish care on house plants (used gloves in working with chemicals).

We met in Bristol, and married in 1952, and she helped work my way through school. She worked in the accounting dep'ts of a construction company, the Wanamaker dep't store in Phila. (we often met at "The Eagle" for lunch -- older native Philadelphians will remember that spot), the payroll dep't of NBC Chicago (she wrote and handed Hugh Downs his pay checks), then settled into administrative secretarial work for a school system, and for Sears in Dallas, San Diego, and San Francisco. Along the way we had four children (two boys, two girls); she was a stay-at-home mom in San Francisco and Annandale. Va. After the kids were old enough and were pursuing their own higher education and vocations, she became a legal secretary, then finished up the last 10 years with a federal agency where, among other things, she did spooky undercover work at the United Nations and in Africa and Asia. Both she and I were traveling extensively in those years, and sometimes our paths crossed, and we loved THAT! She took short leaves of absence to spend time with me in our Amsterdam and London digs, but mainly, we worked out of our No. Va. home and commuted to overseas assignments. She retired in 1995. We looked forward to more exciting years on our own and visiting friends and relatives; little did we know what lay ahead. We had never heard of PSP before 1999.

Rose was always a very "proper" person who cared about her appearance, she was meticulous about housework, squirreled away enough money to decorate tastefully with traditional Ethan Allen furniture and other nice things, and, being the daughter of Italian immigrants, she was a =wonderful= cook <mmm-m-m>. She loved to cross-stitch. Much of that has come to an end, thanks to this horrible PSP.

Our faith keeps us going. Without God, we'd be at a loss to cope. Rose says she is looking forward to the glorious outcome beyond the deep shadows.

I was Rose's full-time caregiver until a stroke felled me in May 2004. We had to move out beyond Dulles Airport to be closer to our children and medical help. We have a certified health aide to help with Rose most days and some evenings. I fill in the rest of the time. I've recovered sufficiently to begin news reporting again, but on a part-time basis. I need to spend more personal time with Rose as this horrid disease clamps more tightly about her. I'm committed to keeping her at home, among loved ones and familiar surroundings, no matter how difficult. Circumstances have changed, but we still love each other, perhaps more than ever.
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Postby patriciaajones@cox.net » Fri Jul 29, 2005 3:58 pm

Great idea. Let's try to keep this post just for this information.

NAME: Pat
Relationship to PWPSP: Wife for 46 years
PWPSP: Jack
DATE OF BIRTH: 11/08/1935
DIAGNOSED: 2005
SYMPTOMS BEGAN: Aprox. 1996... Stage 3 with some stage 4 symptoms
LOCATION: San Juan Capistrano, CA
PWPSP BORN IN: Lancaster PA
BACKGROUND: Third child, only male, parents deceased (Cancer)Older sister deceased, (Kidney failure.) Jack and I have a son and daughter and two teen granddaughters. Jack worked ordinary jobs, office mangement for many years. Last five years before symptoms, worked as manager in a plant that made plastic bottles for Pepsi, Coke, etc. (Chemicals?)
Before I knew they were symptoms of a serious problem, I noticed that Jack would often come home from work with a cut or abrasion on his head. He would say he ran into something. One day he announced that he was finished, giving his notice at work. He was not yet old enough to retire and I had just recently retired at 62 after shoulder surgery made it difficult to work. Having him home all day enabled me to see that he was having some strange symptoms. He seemed unsteady on his feet, began having bowel and bladder accidents, then started falling over. He became very depressed and withdrawn (more than usual) and complained of vision problems. An Opthalmologist said he had what amounted to a stroke in his left eye which left permanant damage. I convinced him he should not drive any longer. He was given BP medicine that made his BP and pulse too low and had to have a Pacemaker. A Urologist said his Prostate was enlarged and he needed surgery for that. The Neurologist had him with everything from Parkinson's, ALS, Alzheimers, Dementia,Stroke, etc. He had every test in the book. His frequent falls called for frequent ER trips and each surgery and medication just made his problems worse. He was finally diagnosed with PSP after we moved to be near our daughter and found an excellent doctor who cared. It wasn't the diagnosis we hoped for, no hope, no pill, no cure. He now has Congestive Heart Failure also. It's an unending downward spiral.
patriciaajones@cox.net
 
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Postby paula » Fri Jul 29, 2005 7:40 pm

Name: Paula
Relationship to PSP: Mother-in_law
Age of PWPSP: 69
Diagnosed: 2002, but symptoms since 1998 with a big progression after gallbladder surgery in October of 1999
Primary care giver is her husband who is 73 they both live with us in the master bedroom since her diagnosis. My husband made a ramp to get in/out of the house, but the house is not very wheelchair friendly. She was a stay at home Mom since my husband was born. My husband has 2 sisters one was adopted.
I have 3 children and work as a nurse in recovery room and operating room. My children are 10, 9, and 5.
We live in Georgia, USA.
paula
 
Posts: 5
Joined: Thu Jul 28, 2005 1:24 am
Location: USA

Postby christine laregina » Fri Jul 29, 2005 8:29 pm

This is really good. I hope this will help.

NAME: Christine
RELATION TO PSP: daughter
PWPSP: Bob Cegielski
DOB: 6-14-40
DIAGNOSED:3/05 symptoms since 2001 after my mom died of lung cancer.
LOCATION: Yorktown, New York
PWPSP BACKGROUND: Born in Queens New York, was in the NAVY and travelled all over the world. For a short time was a postal carrier then became a NYC Firefighter for 28 yrs. Married had 7 children. Work multiple jobs to support the family and just retired.Then my dad had problems with his Gall Bladder and had to have his gall bladder out, Then a heart attack, then mom got sick with lung cancer, she struggled for 1.5 yrs. A month before my mom died, was the attack of 9/11/01 alot of dads friends died that day. So we just thought that the shuffling of my dads feet and the way he was acting was because of all the events that had happened. 11 months later my dad meet a woman. He is diagnosed with prostate cancer and is treated. Then dad moves to Florida with his girlfriend 2002* Things get progressively worse. He goes to a neurologist in Fla. and he diagnoses him with LEWY-BODY in OCT. 04'. In early March I go to Disney and also visit my Dad when his girlfrind is diagnosed with brest cancer and she can't take care of in anymore and he flies home with us. He is then Re-diagnosed with possible PSP in March 05' and confirmed July 05' currently in between stages 2 and 3 and very angry.
MY BACKGROUND: Single mom with Bobby, 8yrs. old boy.
(separated from husband) and work as a Administrative assistant in a private school.
christine laregina
 
Posts: 3
Joined: Fri Jul 29, 2005 5:06 pm
Location: USA

Postby granny314 » Fri Jul 29, 2005 9:12 pm

NAME:Sue RELATIONSHIP:Wife PwPSP:Ron DATE OF BIRTH:1/8/46 DIAGNOSED:2002 symtoms since 1999 now stage 4 LOCATION:L.A.Caiif.BACKGROUND:Born in Arizonia.Moved to California age two.Lived in Banning Cal. until age 14.Has lived and woked in L.A. since.Worked for a Florist for 12 yrs.Worked at an office supply,delivering for 22 yrs.MY BACKGROUND:Married to Ron for 35 yrs.Was a child care provider for 20 yrs,now acare provider for one great big 210lb 6ft3in child.
granny314
 
Posts: 544
Joined: Sun Jul 13, 2003 12:04 pm
Location: USA

Postby jz » Sun Jul 31, 2005 7:27 pm

NAME: Julie Z (jz)
RELATIONSHIP TO PwPSP: Daughter
PwPSP: Mother, Lola Shattuck
DATE OF BIRTH: 5/8/29
DIAGNOSED: 12/1/03 (now in Stage 4)
LOCATION: Michigan (downstate)
BACKGROUND: My mother was always the life of the party...Laughing, happy and a leader. Has 3 sisters and 1 brother. My family is very very close. She worked as a sales rep for her company until July 2002 when she fell in her bathroom and injured her knee. She's has 24/7 in home care ever since. Confusion/lack of confidence began Spring/Summer 2000 (Stepfather passed away April 1999, they were married for 35 years. He had Alzheimer's for the last 4 years of his life. My mother never left his side) Spring/Summer 2001 mom began falling backwards, unsure of driving skills. Dec 1, 2001 diagnosed w/Alzheimers. Dec 2002 diagnosed w/Parkinson's. Dec 2003 diagnosed w/PSP.
jz
 
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Joined: Tue Jul 20, 2004 11:39 am
Location: USA

Postby misty_killion » Mon Aug 01, 2005 6:42 pm

NAME--Misty Killion
RELATIONSHIP TO PWPSP--Granddaughter
PWPSP--Donald Dody
DOB--9/17/1932
DIAGNOSED--August of 2003 at Mayo in Minnesota
LOCATION--Kansas City, Missouri
PWPSP BACKGROUND--Donald was in the military during his younger years in Atlanta, GA. They moved to Missouri, because that was their original state that they lived in. He got a job at Hallmark Cards, working on the printing press and eventually wen to work on mechanical things. They have 3 children, one that passed of a heart attack in April, he was only 48. They have seven grandchildren ranging from 32 to 18. And 6 great grandchildren from 9 to 8 months old. They are very simple people, that are loved by everyone.

MY BACKGROUND--I am the second to the oldest grandchild. I am 29, a stay at home mother of three boys that are 9, 5 and 2. I am plenty busy. I have been married to my second husband for 6 years.

We seem to think that maybe grandpa got this terrible disease while spraying his yard with a pesticide, that was in 1988 when he retired. It caused him to break out in terrible hives, he was very sick then. But, he also worked in a paper mill which i have seen other people write of working in.
Nice to read about all of you..
misty_killion
 
Posts: 32
Joined: Sun May 29, 2005 5:02 pm
Location: USA

Postby Jim in New York » Mon Aug 01, 2005 11:39 pm

Name: Jim
Relationship to PwPSP: Son
PwPSP: Father, Jim
DOB: 1936
Location: Central NY
Chemical exposure: My father paved roads (asphalt/blacktop) his whole life. Standing over hot, smoking blacktop all day and breathing in the fumes.

Misdiagnosed several times as were most of your loved ones.
Jim in New York
 
Posts: 37
Joined: Mon Aug 01, 2005 7:10 pm
Location: USA

Postby bert » Tue Aug 02, 2005 12:56 am

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bert
 
Posts: 188
Joined: Sun Jul 31, 2005 7:50 am
Location: Australia

Postby grannysandim » Tue Aug 02, 2005 6:09 am

NAME: Sandi

RELATIONSHIP TO PWPSP: Wife for 34 years

PWPSP: Lester Morrison

DOB: June 23, 1947

DIAGNOSED: April 2005

LOCATION: St. Louis, Missouri

PWPSP BACKGROUND: Born in Blacks Harbour, NB, Canada, lived there until around 4 years old with parents and 3 sisters, 2 older born in England and 1 younger also born in Blacks Harbour. Moved to St. Louis Missour another sister born there. Has an Associates Degree in Hotel/Restaurant Management. Worked selling newspapers, in police garage, front desk hotel and was drafted into the Army. Was P.P. at Fort Leonardwood, MO and then sent to Viet Nam. When returned from Nam he worked as a bartender, for Westinghouse Electric in warehouse and then in a motorcycle retail store and distributorship. My father started his own business in the motorcycle industry and Les and I went to work for him. My father had a heartattach and turned the business over to us 10 years ago and we have been running it ever since. Les showed signs of illness at least 8 1/2 years before diagnoses and was misdiagnosed with pyschotic depression prior to being diagnosed with Bulbar onset PSP and ALS with frontal temporal dementia. His symptoms really progressed after the death of his father 2 1/2 years ago. He has not worked for 2 years. We have 2 children 33 and 31 and 2 grandchildren 5 and 1. Les just turned 58.
grannysandim
 
Posts: 679
Joined: Wed Apr 20, 2005 12:26 am
Location: St Louis Missouri

Postby dandelion » Tue Aug 02, 2005 11:39 am

Name: Eileen
Relationship to PWPSP: Daughter
PWPSP: Marilyn
DOB: 4/11/28
Location: Erie, Pa.
Diagnosed: Never really diagnosed with PSP, figured it out on my own. Neurologist lumped her disease under "Parkinson's Syndrome".
First symptoms showed up in 1994. Was first dianosed with Chronic Fatigue Syndrome (what a joke!). Was referred to a neurologist in 1998. Was put on Sinamet and it did help for awhile, but as time went on, her symptoms seemed to increase expotentially. She went from a cane, to a walker, to a wheelchair in about 4 years time. My father was her primary care giver until January of this year when he went for major heart surgery. I had to put my mom in assisted living, but she soon went downhill rapidly and had to be placed in a nursing facility in March. My father died 3 days after that. I am now her POA. She is going downhill and wants to die. When her time comes, I will most gladly release her. She has suffered enough and has no quality of life. She is confined to a wheelchair and bed and cannot even roll herself over. She cannot move her legs. Her arms move very slowly, but there is no coordination. She cannot feed herself and has to rely on others to do that. Was finally taken off of the Sinamet in March and her severe hallucinations went away. She has such a small appetite that she lost 50 lbs in about a year's time. They have her weight finally stabilized. They feed her some special calorie-dense foods as a suppliment to her meals. She sleeps almost all of the time hey have her in bed and she is in bed a lot. She developed a large bedsore on her backside and they try to keep her off of it so it will heal. She gets protein and other nutritional suppliments to help her skin heal, since she doesn't eat enough to get the proper nutrition. The skin is finally healing, but slowly. My mom worked in housekeeping in a hospital and did have to work with various cleaning fluids. I don't know if this has anything to do with the disease. My mother is in stage 4.
dandelion
 
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Joined: Tue May 03, 2005 10:32 am
Location: USA

Postby CarolS » Tue Aug 02, 2005 3:04 pm

Name: Carol
Mother with PSP
DOB: 9/7/27
DIAGNOSED: 2003 Symptoms started 5 years ago.
My mother had several operations in the past but the last one, 5 years ago, was a hip replacement and that's when it all started. She kept saying she didn't feel right and felt like she was in a fog all the time. I believe the anesthesia brought the horrible PSP disease out.
CarolS
 
Posts: 14
Joined: Tue Aug 02, 2005 2:20 pm
Location: USA

Postby Judy24kt » Tue Aug 02, 2005 10:21 pm

What a great idea: Thanks for getting it started
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NAME: Judy
RELATIONSHIP TO PSP: Husband Bob with PSP
DATE OF BIRTH: 10/9/30
DIAGNOSED: 2003 symptoms since 2000 now stage 3-4
LOCATION: Traverse City, MI
BACKGROUND: Bob was professional skier and commercial electrician until 1979 when we bought 102 acres of Sugar Maples and started Sugar Bush operation. We had a ball doing that for 9 years - then he had a bad fall (12") and crushed his heel. At that point he retired and I became the "bring home the bacon" person.
Judy24kt
 
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Joined: Tue Jun 08, 2004 9:05 pm
Location: USA

Postby kfringuello » Wed Aug 03, 2005 12:52 pm

Name: Karen
Relationship to PSP: father in law (Michael)
dob: 8-12-43
diagnosed: 8/2/05 yesterday!
location: newburgh, NY
background: my husband (34) and I(32) are all my father in law Michael)has- we are both teachers and just recently found the answer to many obscure behaviors and ailments. Needless to say we are overwhelemed.
kfringuello
 
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Joined: Wed Aug 03, 2005 12:38 pm

Postby katygirl » Wed Sep 21, 2005 3:34 pm

Bumping this up in memory of Mother Mary and to show our respect for Georgie.

Sad day...
Cindy
katygirl
 
Posts: 179
Joined: Wed Jan 21, 2004 4:10 pm

Postby Bridget » Wed Sep 21, 2005 4:37 pm

Name: Bridget Duggan
Relationship: Dad has PSP
PwPSP: Patrick Duggan
Date of Birth: 7/9/38
Diagnosed: Dec. 2001 after several years of symptoms and Dr.'s telling him he would be better if he lost weight and didn't drink as much
Location: Denver, Colorado
Background: Dad is the 2nd of 4 children, born in South Dakota but moved to Denver as a teenager. All his siblings are healthy. Worked his entire life as a Petroleum Jobber supplying gas stations with fuel and running his own stores. Still has business. Married for 44 years until Mom died this past June from Melanoma. He did not smoke but Mom did. His 7 children are stepping up to care for him. He is fiercely independant, stubborn and totally lovable.
My background: Husband and I recently moved in with Dad to "assist" him. I am married with 2 children 18 and 20. Work as a paralegal and office manager for law firm.
Bridget
 
Posts: 393
Joined: Tue Sep 13, 2005 11:42 am
Location: Denver, Colorado

Postby Maggita » Wed Sep 21, 2005 6:49 pm

Name: Kate Joost
Relationship to person with PSP: Daughter
Person with PSP: Cecily Joost
Date of Birth: 7/23/24
Diagnosed: 6/96
Location: Portland, Oregon: Oregon Health Sciences University

PWPSP:Cecily was born in the central valley of California, Fresno County California. She was the 2nd youngest of five. Her father was a rancher of Holstein Cows for milk production,and he farmed raisins. When she was seven she was bitten by a Black Widow spider. Mom became ill and nearly died. At the age of 18 she married a doctor, her first husband. He later worked at Mercury, Nevada, for General Electric during the above ground testing of the atomic bomb. Later in life, after marrying my father, she refinished lots of furniture, stained shingles on our house, wall-papered and painted the interior of our house. And later still, worked at the Stanford Universiy, Linear Accelerator Center. In all of the above mentioned, there was ample opportunity for her to be exposed to numerous toxic material. My mother also suffered a significant head injury that caused her tolose consciousnes when she was 61 years old.

Other than the above mentioned, she was a remarkable woman with a terrific sense of humour. She had the remarkable ability to rise above the worst possible circumstances, including PSP.
Maggita
 
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Joined: Fri Jul 22, 2005 12:03 pm

Postby grannysandim » Wed Sep 21, 2005 6:57 pm

It is because of this post and a couple of others that I have made the website http://www.psprecognition.com

It would be great if everyone that posted their information in this post would also put their information on the website. It was made for all of you and your PwPSP.

Sandi
grannysandim
 
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Joined: Wed Apr 20, 2005 12:26 am
Location: St Louis Missouri

Postby JudyT » Thu Sep 29, 2005 12:06 pm

OK - here goes.....

Name: Judy T.
Relationship to PWP: Daughter - Dad has PSP
Person with PSP: Robert S.
DOB: 11/21/25
Diagnosed: about 10 years ago, some symptoms even before that
Location: Outside of Philadlephia
My Background: 47 yrs old, married, two teenage daughters. About 30 years of experience as an administrative assistant.
Background of Person with PSP: Dad lived in a rural town area almost all of his life. When a Sr. in high school, he moved into the city. He left school and was drafted into the Navy shortly there after. In the Navy, dad was trained as a boat motor mechanic. After leaving the Navy several years later, dad became an automobile mechanic with a taxi company (20 yrs) and then a major oil company (another 20 yrs). He was forced to retire at 69 and then worked at a local college in shipping and receiving. In his employment I'm sure he was exposed to numerous chemicals, probably too many to name, and much of his exposure would have been before protections were put in place. Dad was also well known for chemically treating our lawn to keep it lush and green and kill bugs. Most of these chemicals have been taken off the market because they are not safe!

I don't know what stage dad is in...he has symptoms from every stage. Mostly he falls, chokes, has serious eye closure, has serious eye sight problems, gets confused, can't speak clearly, can't do much for himself (mom does it all), etc.
JudyT
 
Posts: 261
Joined: Tue Jan 18, 2005 10:57 am
Location: Philadelphia, PA

Postby angiehuntley » Fri Sep 30, 2005 9:32 am

Name: Angie Huntley
Relationship to PSP: Father with PSP
PwPSP: Jim Downs
Date of Birth: 8/9/41
Diagnosed: 2001 symptoms since 1998
Location: Kalamazoo, Michigan/USA
Background on my dad: The most self motivated man I've ever known. Very hyper, very active, always striving to do better and be a better man. Was an awesome man! He's been married to my mother for 39 years and they have 2 children (myself and my brother Jamie), and 6 grandsons. He designed and built fiberglass car bodies for the past 30-40 years. Has been exposed to heavy fumes and chemicals involved in the fiberglass trade, as well as huge amounts of dust.
angiehuntley
 
Posts: 213
Joined: Wed Sep 28, 2005 3:11 pm
Location: USA

Postby Mary Kelly » Sun Oct 02, 2005 8:02 am

What wonderful information we have accumulated here. I would like to add to it (unfortunately):

Name: Mary Kelly
Relationship to PSP: Father with PSP
PWPSP: Richard
Date of Birth: 7/29/39
Diagnosed: symptoms since 1998 or so. diagnosed in 2002.
Location: Owensboro, KY
Dad's background: Grew up in a mining town of Madisonville, KY. His father, a Parkinson patient, was a miner, as was daddy when he was young - high school, pre-college. Daddy was a banker by profession, but loved wood working, as did his father. He was exposed to numerous chemicals as a result of striping and refinishing furniture. Dad had a heart attack in 1994 and was on beta blockers until his symptoms became obvious. Doctors believe the beta blockers could have set the PSP gene in motion.
Dad is in the final stage and Mom is his primary caregiver. He is at home and Mom has help come in to the house as much as possible to help out. We have to do something to end this terribly cruel disease! Thank you for all you all are doing!!
Mary Kelly
 
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Joined: Sat Oct 01, 2005 11:57 am
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