Foundation for PSP | CBD and Related Brain Diseases

[nokesl]

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.

[aimee422]

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

[rhondascissorhands]

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

[santafe]

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.

[mythsrs]

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.

[Pauline]

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.

What I would like to see happen: 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

[Cecilia Camacho]

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.

[katygirl]

Name: Cindy Lafleur
Relationship to PwPSP: Daughter
PwPSP: James Brown
DOB: 1939
Diagnosed: Dad was finally diagnosed 4/2003, but has had symptoms since 1996. Treated for PD since 1998.
Location: Albany, NY
My Background: 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!)
PwPSP Background: 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.

[janvan]

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.

[daddysgirl]

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

NAME ~ Laura Gwosdz
RELATIONSHIP TO PSP ~ Father with PSP
PERSON WITH PSP ~ Milton Gwosdz
DATE OF BIRTH ~ March 1, 1933
DIAGNOSED ~ August 2002
LOCATION ~ 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.
MY BACKGROUND ~ 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.
BACKGROUND ON PWPSP ~ 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 ... []

[jz]

NAME: Julie
RELATIONSHIP TO PSP: Daughter
PwPSP: Mother
DATE OF BIRTH: May 1929
Date of Death: June 19th, 2006
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.

[grandma]

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.

[tam]

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.

[PJ]

NAME: Pamela
RELATIONSHIP TO PSP: Father with PSP

PwPSP: C S Edwards
DATE OF BIRTH: 5/26/35
DIAGNOSED: 6/2004; symptoms since 2000 with a mix of all stages
LOCATION: Dallas, Tx
PwPSP BACKGROUND: 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.

My background: 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.

[suzy]

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.