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Postby Barb2 » Tue Nov 15, 2005 12:42 am

NAME:Barb
RELATIONSHIP TO PSP: Father with PSP
PwPSP:Duncan
DATE OF BIRTH: Dec. 24, 1924
DIAGNOSED: Unsure of date - over 10 years ago, correctly diagnosed early in disease, now in later stages, nursing home, hospice care.
LOCATION of father: Washington State
BACKGROUND: Father grew up on dairy farm, artillery in WWII, radio, tv, Xerox copier repair/maintenance. Hobbies included flying and building/rebuilding small aircraft.
Barb2
 
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Postby Jrusty » Thu Mar 30, 2006 11:22 pm

Miss this forum for a couple of days and it takes off, I think this is great. I have enjoyed meeting all the new members. Here my profile.

Name: Jane
Relationship to PSP: Wife
PWPSP: Russ
DOB: 6/6/1934
Diagnosed: PD with dementia 2001; Parkinsonism 2002; PSP Jan. 2004
Location: Springfield, OH
Background: Russ was an Art Teacher for 37 years. This disease has taken all his skill from him. He also worked summers in the seed corn fields with detasseling crews, he would come home smelling like insectcide. Was a heavy smoker until our son was born, he quite. (that was 43 years ago. His disease started out with personality changes, then falling usually backwards, slowness, complaints of eye problems. He is now totally disabled, I do all of his ADL's (activities of daily living) except eating, on good days he can feed himself. I am so thankful that he still eats well. Chokes on liquids, is now on thickened liquids from honey to pudding consistency depending on the day.

Greetings to all the Neubies, this forum will let you know you are not alone in this battle.
Jane
Jrusty
 
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Location: USA

Postby Nancy123 » Fri Mar 31, 2006 12:24 am

Hi,

Name: Nancy
RELATIONSHIP TO PSP: Father has PSP
PwPSP: Eugene Turney-age 73
DATE OF BIRTH: Jan. 30, 1933
DIAGNOSED: Jan.2006 but has had symptoms for 4 to 5 years-stage 3/4
LOCATION: Kamloops, BC Canada
BACKGROUND: Former teacher and draftsman-worked in pulp mill before this.
Lives in a nursing home near my Mom now. His daughters all live at least 4 hours away.
Nancy123
 
Posts: 38
Joined: Sun Jan 23, 2005 5:08 pm
Location: Canada

Postby bonnie_b » Fri Mar 31, 2006 9:07 am

NAME Bonnie
RELATIONSHIP TO PSP Mother with psp
PwPSP Verna
DATE OF BIRTH November 30, 1938
DIAGNOSED November 2005, Symptoms for 4-5 years prior to that
LOCATION Nova Scotia, Canada
BACKGROUND Mom worked most of her life as a nurses aide.
bonnie_b
 
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Location: Canada

Postby 4bertyhon » Sat Apr 08, 2006 11:41 am

Name: Susie
Relationship to PSP: Married to Bert for almost 35 years
Pwpsp: Bert (Bertyhon)
Bert's DOB: 01/14/1944
Diagnosed: June 2005 after 3-4 years of symptoms
Location: Riverside (Southern) California
Background: Bert worked for many years as a chemist and in tech service for chemical companies. For a few years we owned a metal finishing business where Bert was exposed to a variety of chemicals used in metal finishing. I don't know if this is a connection or not. After closing our business, Bert worked as a Campus Supervisor for our local school district. He held this position for 9 years until he was forced to retire 2 years ago due to his illness.
Current condition: Bert's illness seems to be progressing fairly rapidly. Since last June has gone from needing some assistance to walk, to walker and wheelchair. His voice is getting softer and is speaking less. This past week he was tested to be evaluated for a feeding tube due to slight weightloss and some swallowing problems. Does still eat solids, but doesn't seem to have the same appetite. More and more I notice the "gaze".
Still never complains ! He is so much stronger than I am

Susie
4bertyhon
 
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Postby Crazy Mary » Wed Apr 12, 2006 12:44 am

name: Mary Hamblin
Relationship to psp Husband Stephen Bruce Hamblin
DOB 7/6/54
Diagnosed June of 2001 was showing signs of psp about two years prior.
We live just outside of Bonne Terre Mo.

As I said Bruce started showing signs two years prior to diagnosis.We saw four neurologists before getting our diagnosis. He was or seemed to be healthy except for some high blood pressure,we had under control. He spent 20 years in the Navy on subs and was over exposed several times to radiation,however this seemed to be missing from his military files. What a surprise that was ,not. When we figured out what was wrong we went to the VA and that was another joke as far as getting help. There was none. The reason we even got a diagnosis was that I got upset one morning and took no argument and drove to Scott Air Force Base. Went straight to their ER and when they told me they couldn't see him because he was not active duty I told them he had given 20 years of his life for this country and I wasn't leaving until someone told us what was wrong with him. At that point the ER nurse said she would try and she got the ER doctor to do the same. He got their head of neurology to come down and he examined Bruce and took a look at the nine sets of mri's cat scans and spec scans we had. I convienently left out the papers where the other doctors had given diagnosis of things ranging from alzhiemer to autism. He took his time with Bruce and after another set of scans told us what he thought then asked what the other doctors had told us. He said it wasn't uncommon for the disease to be misdiagnosed. Then explained what he could about it and gave us what paper work he had. He set about helping us as best he could,he was as honest as he could be and I must say I was impressed with him especially after dealing with the other doctors and having such a hard time.We are in hospice now,one of the nurses said she had had a patient with this disease before. The other day she said she felt that he was in the begining of the fourth stage of the disease. I still don't know what that means. I know I do almost everything for him and his eyes and speech are both bad now, but his mind is clear he can still make decisions. When we found out what was ahead of us he did a living will and told me he didn't want the tubes or anything else that would prolong his life. That one is hard because I would keep him with me forever given half a chance,but I have to honor his wishes weather I like it or not.We took two cross country trips before he started progressing,and now he wants to go to pow wow IN SEDALIA in july I'm hoping we can. If we can level out for awhile I think we might be able to handle it. God Bless all of you dealing with this horrible disease.Thankyou so much for the opportunity to vent.
Crazy Mary
 
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Postby jz » Tue May 09, 2006 10:05 pm

Another bump for Mother Mary. We miss her too Georgie.
jz
 
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Postby richard.dwane » Thu May 11, 2006 4:45 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
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.

<hr height="1" noshade id="quote"></font id="quote"></blockquote id="quote">
richard.dwane
 
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Postby richard.dwane » Thu May 11, 2006 4:58 pm

NAME: Richard
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Kathleen Mary Therese Dwane
DATE OF BIRTH: 1/10/1937
DECEASED: 23rd October 2005
DIAGNOSED: Early 1998. Symptoms since 1995
LOCATION: Birmingham, West Midlands, England.
BACKGROUND: Mom came over from Ireland in the 60's. Married for 47 years to James, 4 children (i'm the youngest at 34). Worked most of her life at Sorrento Maternity Hospital and retired in 1994... her 'reward' was to start becoming ill less than a year later... some reward, eh.
She never gave in, PSP never beat her, she smiled to the end.
I miss her so, so much. Her last words to me were; " Love ya, God Bless" and then she waved me goodbye... and that's good enough for me.
richard.dwane
 
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Postby cloverlady » Mon May 22, 2006 7:59 pm

NAME: Diana
RELATIONSHIP TO PSP: caregiver while wife works
PwPSP: David Denney
DATE OF BIRTH: 1939
DIAGNOSED: Fall 2003
LOCATION: West Central Indiana
BACKGROUND: Worked in construction; owned own company. Born in Kentucky.
My Background: Born in 1956 in Indiana. Worked for General Motors for 22 yrs, until 2000. Went into healthcare in 2001 - nursing homes and home care agencies. I am now self-employed and work in private home care.
I am divorced and have two children. My daughter is married and has two boys, and my son graduates from high school 5-27-06.
cloverlady
 
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Location: USA

Postby whittingtonl » Tue Jun 13, 2006 5:36 pm

Name - Linda
Relationship to PSP - mother
PWPSP - Betty Huntsman
Diagnosed - June 2006, had signs for 1 1/2 years
Mom - married my dad at 17 yrs old and were married for 40 yrs when my dad died in 1988 (Respiratory arrest and leukemonia). The have four children (2 girls and 2 boys). My sister died in 1986, she was born with spinal bifida. My mom now lives in Oklahoma City where both of my brothers live.

Myself - Married for 30 years to a wonderful man and have three children (2 girls and 1 boy). Our son died in 1987 from a fall out of a tree (he was 6 yrs old). Our oldest daughter is 29 and lives in Cary, NC, married with 2 children and is a nurse. Our youngest daughter (adopted at age 2 from Korea) resides in Pineville, LA, married, had two childred (9 yr old son and 5 month old daughter) and is also a nurse. I will be retiring from federal civil service in August 2007 after 33 years of service. I also reside in Louisiana. My younger brother is very good at keeping me informed on my mothers condition. When I call my mother she does not always tell me the truth on how things are going because she does not want to worry me. She now has a weighed walker due to falling all of the time and I have heard her talk about choking for many many years. She just had a power of attorney done stating she does not want to be put on a feeding tube whenever that time comes. It is going to be very hard for me when she does start to go due to the miles between us.
whittingtonl
 
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Postby marmee4 » Thu Jul 20, 2006 5:45 pm

OK. This is a good idea - especially since it may help identify a common thread such as exposure to chemicals or other environmental substances! Like many others, my hubby thought it was "sissy" to wear the protective coverings - the face masks, the suits - but I was a Science major in college and learned about the frightening side of chemicals, and tried endlessly to get him to take it seriously.

Name: My name is Nancy

Relationship to pwpsp: My husband, Eddie, who was diag. 3/2005, symptoms since 2003.

Date of Birth: Eddie was born 23 Jan.1943

Eddie is a life-time farmer, who has sprayed chemicals, pesticides, insecticides, and done all the welding on the farm for over 40 years. He has a twin brother who worked in city government and has NO symptoms.

Location: Virginia Beach, Virginia

Background: We live on the family farm - continuously farmed by this family since 1607.. when it was a land grant from the king of England.
Interesting note - none of the men in this family have lived past the age of 70. All were farmers.

My background: We have Eddie's two grown children, OUR own four grown daughters, two tiny, new precious grandbabies, and everyone is extremely concerned about him. We've been married since 1979, with my teaching career coming to a halt two years ago - to try to make more income by selling real estate! Plug: if you want to move this way, please let me know -- I'll help you out!

Comments: Eddie has a great deal of trouble as the day wears on = he seems to get tired and then less coordinated. He has the "mask", he acknowledges that he isn't moving as smoothly as he used to, and he takes forever to accomplish the daily living tasks. It's getting so he needs help doing simple things. He falls a lot, and gets very confused when he's "out of his element" as he says. We have a "Gator" which he still drives around the farm - and that gives him a feeling of doing something, and also enables him to go out to the barn and back.

Would someone please help me understand the STAGES that are often referred to here - I cannot find any research on that topic! Thanks, and God bless you all. Remember, God saves our tears!!
marmee4
 
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Location: Virginia Beach, Virginia

Postby TINKER » Sat Jul 22, 2006 6:42 pm

This is to Marmee4 asking about the "stages" of PSP. Somewhere on this chat site, I found someone else who asked the same question. I, also, wanted to know the "stages." My husband was just diagnosed with PSP at the Mayo Clinic in Scottsdale, AZ on 12 July, 2006. Prior to that, he had had a PET scan at Long Island North Shore University Hospital in New York...Dr. David Eidelberg was the neurologist who read the scan. That was in November of 2005. Dr. Eidelberg felt that my husband had either MSA or PSP....he felt it was too early in the disease stage to say "which" disease Joe had.
In July we returned to the Mayo Clinic to have the Movement Disorder Specialists there take a look at Joe. Three doctors all felt it was PSP. Knowing this, I searched for "stages." I will forward the email address at the bottom of the page I printed and hope it will bring you to the site I found. Just one word of caution. The stages, to which I refer, were identified in 2000. Much has been learned since then, so just keep that in mind. The address at the bottom of the page I am looking at is as follows;
http://www.neurosy.org/disease/psp/stages.shtml
TINKER
 
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Postby Rustin Berlow » Tue Jul 25, 2006 12:40 am

Just a few simple answers

NAME: Rusty
RELATIONSHIP TO PSP: Had Patient diagnosed with PSP, Re-diagnosed with Parkinson's. The medications helped him get better, I thought I had a cure or at least treatment for PSP, now I don't know what I have.
PwPSP: David
DECEASED: I smell that way sometimes, but not yet.
LOCATION: San Diego, CA
Rustin Berlow
 
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Postby TINKER » Tue Jul 25, 2006 12:04 pm

Hi to all of you; wish I and all of you didn't have to be here.
Name: Helenn....AKA "Tinker"
Relationship to pwPSP; wife
pwPSP: Joe
pwPSP Date of Birth: April 10, 1934
Diagnosed:(PSP) July 11, 2006, Mayo Clinic, Scottsdale, AZ
Had shown symptoms since 2003.
Location: Cherry Hills Village (Denver, CO suburb)
Background (pwPSP): Retired television executive. Lives at home
and is in early stages of this disease. Uses walker in home and a cane when out in public. Beginning difficulty with eyes. Falls backward.
TINKER
 
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Postby hmstrain » Tue Jul 25, 2006 8:31 pm

Name: Heather
Relationship to PSP: Father with PSP
PwPsP: Tom
Date of Birth: 3/20/41
Diagnosed: 7/20/06
Location: Independence, KY
Dad's background: Dad worked for the airport for most of his life. He is now retired and works a couple of days to keep himself busy. He is the father of 7 children and has been married to my mother for 43 years.
My background: I am 25 years old and will be married next summer. I am a first grade teacher and I live alone with my dog and cat in Covington, KY.
hmstrain
 
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Postby ccsabathia » Wed Jul 26, 2006 10:16 am

I am a newbie..my MOM diagnosed last week, after 4 years of searching.
She is 80
My father (without a computer) is caregiver

Mom lived in Pasadena TX, among chemical refineries for 50 years. They moved to Mineola TX (east TX) 20 years ago. She had some sort of stomach disorder for 4 years, constant diarhea, inflamed intestines that caused a constant low grade fever. (She drank lots of milk and ate ice cream 24/7 because it made her stomach feel better...I suggested milk allergy and no one listened.) Over the next 4 years the falling backwards started, the double vision, loss of muscle control, demencia, sleeplessness. etc. etc. and PSP was diagnosed. She is now in rehab, learning to stand with assistance, so my father can care for her at home (with help). PS....I live in OHIO, and when I stayed with her in the hospital last week, I took it upon my self (after 8 years of diarhea, to take her off milk...at least now, she doesn't have diarhea all the time)
ccsabathia
 
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Postby oleamon » Wed Jul 26, 2006 12:21 pm

NAME ~ Orlene
Relationship to PWPSP ~ Sister
PWPSP ~ Bud Leamon
Date of birth ~ 1/8/1933 Reeds, Missouri
Diagnosed ~ 12/2005 University Hospital Denver, Symptoms since 1998
Location ~ Pueblo, Colorado

Background on PWPSP: Bud is number 3 of six children, however there is only 3 of us left. My brother Keith, Bud, and me. He was a career Marine, retiring as MSGT in 1972 after 22 years serving his country. He served mainly in the Far East. He and his wife (who later passed away with cancer) moved from Oregon after his retirement to Pueblo and opened the first ever State Beauty Supply store here. Later, he opened another SBS store in Canon City,CO. He was treated for several years for PD and ALS, but when I was able to get him out of an abusive home, I took him to Denver where he was diagnosed with PSP by the Director of Neurology who told us that he'd had this disease for a long time already. Now in a nursing home here in Pueblo.

My background: I have 3 sons from a previous marriage, 4 granddaughters, and 2 great-grandsons. I attended the University of Southern Illinois and have traveled around the world, living for a year in Bangkok, Thailand. While I lived in Bangkok, Bud and wife Faye lived in Laos where he was stationed at the Embassy. We used to visit each other while living there. I remarried in 2002 after 25 years of being single. I'm a licensed Insurance Agent working for State Farm Insurance.
oleamon
 
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Postby bert » Wed Aug 23, 2006 11:03 pm

1, relationship to PWPSP-myself. Born ten days after Joe.5 post back. Actually I am waiting fo some relative to post on this particular forum. The biggest obstacle is, I have to expire first. Greetings, bert.
bert
 
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Postby debrakenny » Mon Aug 28, 2006 3:18 pm

NAME: Debra
RELATIONSHIP TO PSP: Father had PSP
PwPSP: Paul Shuffleton
Date of Birth: 2/17/23
DECEASED: 8/25/06
DIAGNOSED: 2000, SYMPTOMS 1997
LOCATION: I live in VA, my father lived in New Hampshire
BACKGROUND: My father was in Guam, which I have heard to be a common thread. He was a marine pilot in WWII and the Korean War. He was a pilot for Eastern Airlines for 30 years. Other things that I have heard to cause PSP are exposure to pesticides and a blow to the head. My father had both. He also was a heavy smoker til age 50 when he quit cold turkey on his birthday, and a moderate to heavy drinker for most of his adult life. He was also the kindest and best father with an awesome sense of humor!
debrakenny
 
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Postby aswest1021 » Tue Aug 29, 2006 9:04 am

Name: April
Relationship to PSP: Father-in-law
PWPSP: Mike
Date of Birth: 4/9/37
Diagnosed: 8/06; was first diagnosed 3 years ago with PD because of tremors and rigidity; later diagnosed with Lewy Body Dementia due to declining cognitive abilities; PSP is highly suspected because everything else has been ruled out based on his frontal lobe dementia. Has all the "classic" symptoms of PSP, but is just now developing vision problems. Currently is in a wheelchair most of the time, but can walk some with assistance. Can no longer get dressed, bathe, use the toilet, get into and out of beds, cars, and chairs, and feed himself without help. Gets choked on fluids pretty frequently. Has had episodes of paranoia. Has tremors. Is incontinent.
Location: South Carolina
Background: Worked for the FDIC as a bank examiner for many years.
aswest1021
 
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Location: USA

Postby carole » Sat Sep 02, 2006 2:27 am

Name: Carole
Relation : My Husband ,Rajinder (Raj) has P.S.P.
DOB 6/11/1945

Diagnosed April,O4 Neuro-opthomologist U.S.C./ Los Angeles,Ca.
Home ;Crestline,Ca.
Background: Raj was born in India, came to US in 1970 engineering degree, Did MBA in Illinois. Worked for Petrochemical Consultant firm for 23 yrs . in suburb of L.A.
My background: worked 32 yrs as Xray Technologist. Disabled for 8 yrs. due to van rollover accident. Married 31 yrs /no children
Raj is such an inspiration : He's like the everyready battery....
He says he'll be cured. He is quite spiritual and for the past 6 or 7 years he spends many hours daily meditating.
carole
 
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Location: Crestline, California

Postby Shylady » Tue Sep 19, 2006 10:31 am

Am new to the site and amazed at the support everyone has for one another.I wish the best for us all. God Bless us ALL!!!


NAME: April
RELATIONSHIP TO PSP: My mother/best friend
PwPSP: Jeanette
DATE OF BIRTH: 1953
DIAGNOSED: symptom onset 2002,2004 as having CBD,2006 as also having PSP
LOCATION: New Jersey
BACKGROUND: Single mother of 3,very independant and strong willed,worked as waitress,bar tender,store clerk,assembler of sports lights.She and father of children reunited approx 10 yrs ago and married.
Mom has progressed through this/these diseases rapidly, has the ability to make it out of bed to get on the potty or in shower with assistance, must be feed,dressed etc. Currently awaiting throat study as she is choking alot nowadays.
Shylady
 
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Postby joni289 » Wed Oct 04, 2006 5:40 pm

my mom grew up in kanawa county wv .... sulfur water..coal town. chemical town. she moved to follansbee wv ...steel town.... she has suffered since 2000 after total knee replacement. i thought it was the anesthetic but since reading this forum ....maybe it is a chemical.. she also used clordane as a pesticide when it was still available over the counter .she is 74 years old and is very bad. god love my dad for being so supportive... he is her life.
joni289
 
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Postby danabear » Sun Nov 05, 2006 3:34 am

NAME: Dana Chase (daughter, child #4)
RELATIONSHIP TO PSP: Father with PSP
PwPSP: Donald Chase
DATE OF BIRTH: 4/22/38
DECEASED: October 22, 2006
DIAGNOSED: 5-6 years ago with PSP
Fell twice in one year: thought it was due to mini strokes, broke wrist and hit head during 2nd fall
Thought to have a form of Parkinson's
LOCATION: Scranton, Pennsylvania
BACKGROUND: Born and raised in Scranton, MBA and worked as an accountant and fiscal coordinator, taught collegiate level courses, married for 44 years, father of 5 children, proud grandfather of 1 granddaughter and 5 grandsons, loved to fish and hunt when younger, avid Penn State football fan, loved fixing up old junk into new treasures
MEDICAL HISTORY: Rhuematic fever as a child, major stroke at age 32 which he had a full recovery (drank alot before stroke and smoked cigars), broken wrist from operation-a whole body staph infection
only chemical connection I can think of is that he helped to deliver coal as a child
MY BACKGROUND: Married, two cats no children(YET), Reading Instructional support teacher in Baltimore City Schools, one of 5 children who are still learning and yearning to know more about PSP




--------------------------------------------------------------------------------
danabear
 
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Postby frogdahl » Sun Nov 05, 2006 11:20 am

Thanks, Georgie for starting this.

Name: Teri Dahl
Relationship to PSP: Daughter
Person with PSP: Wilma Kay
Date of Birth: June 22, 1928
Diagnosed: May 2006
Background on PWPSP: Mom was born in Spirit Lake Idaho, but lived mostly in Columbus Ohio. Her parents were original founders of Highlights for Children, before they sold it. My Dad and Mom met at Ohio Art College, and he designed the original cover. We moved out west when I was 4, to the coastal town of Westport Washington. Mom started a career cooking in restaurants. In 1974 Mom finally left my Dad and moved to Oregon where she began cooking for the University of Oregon, until her retirement. She has 4 children me being the only one that lives near her. She recalls no exposure to chemicals, other than lots of bleach with cleaning.
Mom started falling in 1998, and we noticed she was having problems with her thought process. Then we all felt she was having strokes as her speech was slurring. They couldn't do an MRI because of a pacemaker. So Drs. dismissed her problems. Mom did permanent damage to one of her eyes,in 2005, when the other wasn't allowing her to read or see well she was sent to a Neurological Opthomologist. He diagnosed her with PSP after seeing her and her brain scan from after the eye surgery. We are so thankful everyday for the knowledge we finally have. That Dr. was at Oregon Health Science University in Portland OR.

Mom currently resides in an assisted living place just down the street from me. She is wheelchair bound, difficult speech, but we can still carry on a conversation. I pray that God will have mercy on her.

My background: Married 27 years, 3 children, 1 Grandchild, and one on the way. Was a homemaker until children left home and am now a receptionist and student. I see Mom everyday and we take her to church on Sundays.
God Bless you all for your support and encouragement!
frogdahl
 
Posts: 100
Joined: Sun Oct 15, 2006 9:46 pm
Location: Springfield, Oregon

Postby Fransdaughter » Mon Nov 20, 2006 4:12 pm

Name: Cindy
Relationship to PSP: My Mother.
PwPSP: Frances Morton
Date of Birth: June 25, 1934
Date of Diagnosis: June 25, 2004 (Happy Birthday?) Symptoms for at least a couple of years before that. First they checked for stroke, then decided it was Parkinson's.

Location: Western Washington (anyone else out there from the Puget Sound area?)

Background: I am married and have a 14 year old son. I live next door to my parents, so I see Mom every day. My dad is her sole caregiver. He is able to leave the house for short periods of time to shop, etc, as Mom is pretty much stuck in her chair. My son or husband or myself will sit with her if he is going to be out longer than an hour or so. She has a wheelchair which is used for moving her to the table for meals, to the bedroom and bathroom and to the car. She has bladder control problems so now has a catheter. Home Care comes in once a week or so to check the catheter and whatever else needs to be done. Her speech is very hard to understand now, my son is probably the best of us at deciphering it. So far very little choking.
I have been reading this forum for the past 2 years and finally feel it's time to join. I asked my Dad and he said fine, good, do it. There is a lot of stuff here that hits home.
Cindy
Fransdaughter
 
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Postby frogdahl » Mon Nov 20, 2006 11:20 pm

Cindy, welcome to the boards from a Northwesterner. I live in Springfield OR. I did contact a woman in Rochester,Washington, when my Mom was first diagnosed, this past spring. She was very helpful. Not sure where I got her name though. She was the closest support contact for anyone in Oregon. Hard to believe huh? I will see if I can find the info again and pass it on. So sorry to hear about anyone having to deal with this. My Mom is lives just down the street from me, in Assisted Living. I go everyday, and they are wonderful to her. I wish I could have her hear, but we just can't. She is choking, her speech is weak, but still there. She is in a wheelchair. We are thankful to finally know what is wrong with her and we make it the best we can. Head up, is all I can add.
frogdahl
 
Posts: 100
Joined: Sun Oct 15, 2006 9:46 pm
Location: Springfield, Oregon

Postby carolinemurphy » Fri Dec 15, 2006 11:59 pm

NAME: Caroline
RELATIONSHIP TO PWPSP:Mother with PSP
PwPSP: Bridie (Bridget)
D.O.B: 16th April 1934
DIAGNOSED: Feb 2006; Symptoms since 1999
LOCATION: Galway, ireland
BACKGROUND FOR MAM: Born in northern ireland, moved to england when 16, married with 5 kids,divorsed,remarried and brought home one more child(me), owned and ran own business's, returned to west of ireland in 1990, worked untill retirment.
BACKGROUND ON ME: 27yrs old, Bridie is actually my maternal grandmother, she and her 2nd husband raised me from birth and i consider them my parents, i have always and always will call them mam and dad, i didnt find out the truth of my parentive(?) till i was 13.It dint change a thing for me. i have a wonderful relationship with my real mother(their daughter) christine, we continue to have a very close sisterly relationship, we share in the caregiving of Bridie. Christine has another daughter 3yrs younger than me who i also consider my sister. because of this disease i am losing my mother and my grandmother.
carolinemurphy
 
Posts: 4
Joined: Thu Dec 14, 2006 1:17 pm
Location: Ireland

Postby janetd618 » Thu Jan 11, 2007 12:15 am

Name: Janet Downey
Relationship to PSP: spouse
Person with PSP: Dennis Downey
Date of birth: 1949
Diagnosis: September 2006
Location: southwest Florida
Background: Served in Vietnam, exposed to Agent Orange... pesticides/herbicides/chemicals seem to be a common factor?
First diagnosed with stroke 4/06, then heart failure, then parkinsonism, finally PSP. Dennis is currently in a nursing home since late September. He originally went in for 30 days of rehab to build up his strength, then another 30 days, but was declining and transferred to "restorative care". He is on carbidopa/levadopa among other meds. He just recently voluntarily cut way back on pain meds. He's much more lucid now and motivated to do therapies and ADLs himself. He is hoping to come home soon.
My background: Married to Dennis for 25 years, I was his caregiver until he went into the nursing home. I am not working at present and don't plan to go back to work because I may be caring for him again. I'm very confused by this whole thing. I guess I want answers that don't exist. I also deal with the VA as some others have said. It can be very frustrating.
janetd618
 
Posts: 12
Joined: Tue Jan 09, 2007 9:17 am
Location: USA

Postby vmorrisga » Mon Jan 15, 2007 9:19 am

Name: Vicki
PwPSP: Father
DOB: 7/29/41
Dad was diagnosed in 2005 after several trips to various neurologist. He went to Cleveland Clinic in OH and received diagnosis. He is retired from GM where he was a Stationery Engineer. He also has thyroid cancer. He's been such a great father all of my life, and it is so difficult to see him with this disease and to witness the progression. He lives in Cincinnati, OH with my mother. (My mother is a Rock!) Dad is still able to perform most of his daily tasks as before, however, much slower. His eyes are becoming more stationary and he tends to stutter when he speaks. About me: I am the younger of 2 children (1 brother in Cincy). I am 35 years old, a wife, a mother, and a Realtor. I reside in Carrollton, GA (outside of Atlanta, GA). I am disappointed at the lack of information and knowledge in the medical world. I am trying to stay positive and go by the words I heard yesterday from Joel Osteen: "Don't tell God how large your mountains are--tell your mountains how large your God is!"
vmorrisga
 
Posts: 2
Joined: Fri Aug 04, 2006 12:17 am
Location: USA

Postby spark25 » Fri Feb 02, 2007 2:08 am

NAME: Suzan
RELATIONSHIP TO PSP: Mother had PSP
PwPSP: Jyoung Ja Park
DATE OF BIRTH: January 26th, 1942
DECEASED: August 17th, 2006
DIAGNOSED: PSP sxs. 2002, PSP suspected 2003
LOCATION: Irving, Texas
BACKGROUND: My mother is originally from South Korea. She became a nurse and worked at a hospital in Germany, where she met and married my father. They lived there for several years, and my older brother was born there. They moved to the United States in the late 1970s and had two more children.

My mother started having problems with her legs in 2002, which led to difficulty walking. Our PCP sent her to a neurologist, who initially suspected a stroke. We saw several other neurologists, who thought the same thing. She had MRIs of her brain and spine in addition to several CT scans, none of which revealed any problems. She started having speech problems and eventually became wheelchair-bound. The last neurologist we saw believed my mother had PSP.

MY BACKGROUND: I'm the youngest child in my family. I am currently finishing my last semester of optometry school. Before I started school, I was my mother's full-time caretaker. My dad took over after I made the difficult decision to continue my education. I was 24 when my mother passed away, in-between my internship rotations, and we had the funeral on my 25th birthday.
spark25
 
Posts: 0
Joined: Sat Aug 26, 2006 8:42 pm
Location: USA

Postby tczaj » Sat Feb 24, 2007 9:18 am

NAME: Toni
RELATIONSHIP TO PSP: Daughter
PwPSP: Ray
DATE OF BIRTH: 3/17/24
DIAGNOSED: Feb, 2007
SYMPTOMS: Definitely in 2000, possibly as early as 1997.
LOCATION: <i>Just moved to Texas to stay with a daughter</i>;
20 working years in <b>Central Florida</b>;
was born and raised in <b>New Jersey</b>; and
moved back to NJ in late 70's living there since.

[possible relevent] BACKGROUND OF PwPSP:Ninth of eleven children, four still living. Broken ankle as child that never healed and though it did not place too much limitation on him in earlier years it became problematic recently. This might have impeded the diagnosis of PSP as we attributed his balance problems to the stiff and atrophied ankle and shorter leg.
Dad worked in the aerospace <b>industry </b> in Central Florida, Built and Operated a <b>golf course</b>, Was an inventor exposed to <b>adhesives, paints, and polymers - as fluid, fumes and dust</b>.
OTHER FACTORS or POSSIBLE EARLY SYMPTOMS?: Possible [undiagnosed] <b>Depression </b> for years prior; Was usually awake much of the night since seventies; Loss of oldest son in 1997; Disoriented - got lost while driving 1997; broken hip due to a fall in 1999; uncharacteristic angry outbursts in 2000.

STAGE: Unsure, probably 3 - maybe 4. <b>speech and swallowing (choking)</b> problems developed rapidly during the last year or two. I am told that he has occassional bursts of good speech.

CURRENT SITUATION: Most of the family only has phone contact so it is difficult for me to communicate and to assess his development. My mother and youngest sister went to visit him last month and said that looks quite good under my sister's care. He has lost <b>weight </b> (purposely as he weighed about 200lbs when he went there.) They said that when they left at the airport he clearly called out to my mother, "When are you coming to get me?" My sister who is caring for him (Bless her Heart) told me that he frequently helps her husband resolve engineering problems and communicates well when working with him. So I see the benefit of meaningful and interesting occupational therapy.
COMMENTS: This is a good idea - Thanks! I am also noting that there seems to be an envrionmental contribution i.e. chemical exposure. Other than Guadeloupe Island are there geograpic clusters? I see Texas a lot in this thread, but Dad didn't go to Texas until long after the symptoms had developed.
ABOUT ME: Living near Lexington, Kentucky (any other PSPs nearby?) Willing to move to assist with father. Would appreciate contact with other caregivers.
tczaj
 
Posts: 12
Joined: Wed Feb 21, 2007 4:08 pm
Location: USA

Postby Raf » Thu May 17, 2007 9:09 am

Name: Rafael
Relationship to PSP: Father with PSP
PwPSP: Stanley Lubera
Date of birth: May 3rd 1950
Diagnosed in 2004/symptoms earlier

Location: Crete, IL USA

Background: Moved to the States in 1995 from Germany.
Raf
 
Posts: 8
Joined: Tue Apr 11, 2006 11:59 am
Location: USA

Postby j-pandora » Wed Jun 06, 2007 7:00 pm

NAME: Jessica
RELATIONSHIP TO PSP: Father with PSP
PwPSP: Stanley Lubera
DATE OF BIRTH: 05-03-1950
DIAGNOSED: 2004 symptoms since 2003 now stage 4
LOCATION: Crete Il United States
BACKGROUND: We moved as a family from Germany in 1995. Right now I am working as a waitress at a local restaurant called Northwoods. I am also in a rock band called Pandora which my dad has always supported me with my music career (well its not a career yet but it will be :-) and when it will I will tell everyone about this horrific disease and get sponsors left and right to help our loved ones, so they'll finally find a cure!!!!!
j-pandora
 
Posts: 36
Joined: Thu Sep 07, 2006 11:40 am
Location: USA

Postby mydadhaspsp » Tue Jun 12, 2007 1:39 pm

NAME: Greg
RELATIONSHIP TO PSP: Father had PSP
PwPSP: Douglas Holmes
DATE OF BIRTH: 12/7/33
DECEASED: 5/23/07
DIAGNOSED: symptoms beginning 5/01
LOCATION: NYC/CT
BACKGROUND: Born and raised in CT by loving family (both parents). Was a research scientist (elderly care and sexuality, child neglect and abuse, did the initial Head Start and Hospice funding research).
mydadhaspsp
 
Posts: 70
Joined: Mon Apr 02, 2007 9:24 am
Location: USA

Postby wlusham » Mon Jul 02, 2007 4:38 am

NAME: Wendy
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Sharyn
DATE OF BIRTH: 24th September 1945
DECEASED: 26th March 2007
DIAGNOSED: September 1998
LOCATION: Sydney, Australia
BACKGROUND: My mum was always working but forced into early retirment due to this terrible disease, she worked in libraries in schools. My dad was her full time carer.
wlusham
 
Posts: 11
Joined: Fri Jun 24, 2005 8:32 am
Location: Australia

Postby aboc1960 » Mon Sep 10, 2007 1:26 pm

Name: Alice
Relationship to PSP: Father
PwPSP: B. Hal Brown
DOB: May 3, 1934
Deceased: Nov 22, 2004
Diagnosed: Jan, 2004
Location: Gainesville, VA
Background: Dental Professor Georgetown University, Private Practice Dentist, Marrried 48 years at time of death, 3 children, two grandchildren, my personal hero.

Alice
daughter
aboc1960
 
Posts: 99
Joined: Wed Jun 16, 2004 2:43 pm

who are we

Postby jturosky » Mon Sep 17, 2007 11:08 am

NAME: Janice

RELATIONSHIP TO PSP: Father had PSP

PWPSP: Jack Sterritt

DATE OF BIRTH: Jan. 25, 1931

PASSED AWAY: Nov. 26, 2005

DIAGNOSED: 2000-2001??

LOCATION: Bobcaygeon, Ontario

BACKGROUND: My Dad was a printer all of his life. He and my Mom lived in Toronto and suburbs of Toronto until retirement when they moved to Bobcaygeon, Ontario, CANADA
jturosky
 
Posts: 4
Joined: Thu Sep 13, 2007 1:01 pm

Postby Leah G » Thu Sep 27, 2007 12:26 pm

Name: Leah Gangelhoff
Relationship: Daughter
pwpsp: Char Sample
Date of Birth: June 24, 1930
Diagnosed: September 20, 2007
Location: Birmingham, Alabama
Background for myself: 43 yo, married, no children, dog trainer (have furry kids only), just moved in Dec.06 from Los Angeles, CA back to hometown of B'ham to help mom w/caregiving of my stepdad (renal patient w/multiple complications) - "because aging was affecting her balance, memory..." Now we know.
Background on Char: Born in Atlanta, GA - only child, interior designer, single mother of 2 girls for 11 yrs, remarried in 1975 to current husband. Other illnesses include COPD, PAD, hypertension. Strong, independent woman with a ridiculously fantastic sense of humor.
Leah G
 
Posts: 4
Joined: Thu Sep 27, 2007 3:02 am
Location: Birmingham, AL

Who are we....

Postby Regena » Fri Sep 28, 2007 4:44 pm

NAME: Regena
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Faye Falls
DATE OF BIRTH: 11/13/1934
DIAGNOSED: September 5, 2007 (we will never forget this day!)
LOCATION: Decatur, Alabama
ABOUT ME: Happily married with four adult children and one grandson. I work at Hospice in accounting. My hubby and I are Mom's caregivers. She lives with us. I have one brother who lives five hours from us.
BACKGROUND ON PwPSP: Mother was divorced with two children. Before divorcing, Mom and Dad were married fifteen years. He was mean to Mom and beat her, usually in the head area. I wonder if that is related to her PSP diagnose. After the divorce,she worked various factory jobs. Mom was in her late twenties and decided to go to cosmotology school; then, in her forties she went to college to be a nurse. She worked in hospitals and nursing homes. Mother was caregiver to her Mom (my grandma) for nine years until Mom's health would not permit it. Mom use to be independent and now she depends on us for everything. She said she prays every day for the Lord to take her home.
Regena
Mom age 73 diagnosed wPSP Sept. 2007
Regena
 
Posts: 58
Joined: Tue Sep 25, 2007 9:41 am
Location: Alabama

Postby Lisa45 » Sun Oct 14, 2007 8:11 pm

NAME: Lisa
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Antonette
DATE OF BIRTH: 3/11/40
DIAGNOSED: 8/2007 We were told it was Parkinsons in 2003
LOCATION: Long Island, New York
BACKGROUND: Mother is divorced, 2 children. Worked as a hairdresser for years and then an office worker.
Lisa45
 
Posts: 7
Joined: Sat Oct 13, 2007 6:21 pm
Location: Long Island, NY

Postby Angel » Sun Oct 28, 2007 10:18 pm

NAME: Mary
RELATIONSHIP TO PSP: Wife
PwPSP: Drew
DATE OF BIRTH: 7/1/45
DIAGNOSED: June 2005
LOCATION: Ontario, Canada
BACKGROUND: Married 24 yrs, No children, Owned a pallet mfg business as well as volunteer firefighter in our small town.
Angel
 
Posts: 35
Joined: Fri Mar 16, 2007 12:20 pm
Location: Ontario - Canada

Postby salpetch » Sun Nov 25, 2007 5:07 pm

NAME: Soonie
RELATIONSHIP TO PSP: daughter
PwPSP: Nit Salpetch
DATE OF BIRTH: November 1951
DIAGNOSED: October 2002 as parkinsons, 2004 as psp
LOCATION: Springfield, Virginia
ABOUT ME: This is my first day on the forum. I am 27 yr old, graduated froml school 3 years ago. I was still in school when my mother showed early symptoms. My mom lives at home with my dad who takes care of her. My sister and I live nearby and help out in the evenings.
BACKGROUND: My mother is married, going thirty years now. She grew up in Thailand and moved to the US with my dad in 1985. She was a hair stylist at Hair Cuttery. So she may have had lots of exposures to perming/coloring solutions. Who knows what she was exposed to in Thailand when she was growing up. My mother has 7 other siblings that are fine. My grandmother is still alive and doing ok, just a little of short term memory loss. She's a beautiful, independent, kindhearted women who loves to travel and was SO active. Now, she's like a prisoner. I'm not sure what stage she is catogorized as but her symptoms are as follows: hypertension uncontrollable with meds, feeding tube (we only use it for water and medication mainly...she still wants to eat some things by mouth and even the Ensure drink by mouth, so we try to feed her by mouth...it takes forever because we have to close her mouth and stimulate the muscles for her to remember to chew and not freeze up.), right eye closed mainly, difficulty sleeping w/o meds, muscle rigidity to the max, cramping of muscles, feet and fingers bowed inwards so she no longer can put pressure and walk on it, chokes on food and her own saliva sometimes, shortness of breath, night sweats, no longer speaks but can cry sometimes, diffitcult to process info for communicating most of the time b/c she likes to repeat last hand gesture when we ask her a question. I don't know whether stem cell transplant can still help her, or it is too late. One can only hope.
salpetch
 
Posts: 4
Joined: Sun Nov 25, 2007 11:23 am

Postby LRS » Fri Apr 04, 2008 12:26 pm

Name: Lisa Serafini
Relationship: Daughter
pwpsp: Jean Taylor
Date of Birth: March 28,1936
Diagnosed: February 12, 2008, (mom's disease is very rapid, first symptoms were in Sept, 2007, she has signs of all stages, but healthcare givers say she is in final stage. All of this has happened in 8 months).
Location: Greensboro, NC

Background for myself: 47 years old. I don't work, I stay at home and help take care of mom. I have a wonderful husband of 7 years, Mike. I was born and raised in NC, married Mike in 2000 and lived in PA for 5 years. Mom lives with us now. We have a silly, goofy, beautiful 7 year old beagle named Boomer. He gives us so much happiness. I have one fantastic sister, Kam, who helps me take care of mom. God has blessed me greatly in my life. I am a born again Christian and Praise Gods precious name everyday. If not for Him, I don't think we could handle this horrible disease.

Background on Jean: Born and raised in Randleman, NC. One of ten children. Father, sisters and brothers worked in cotton mills. Lived in a "mill village" house growing up. House was about half block from a plant that dyes material. No one else in family has ever had this disease. Mom was divorced and worked for decades in the furniture sales business. One job was about 20 years in an old school house that had been converted into a furniture store. Building was very old. Asbestos, mold, mildew, who knows what else? 2 ladies who worked there now have brain related illnesses, one a brain tumor, one a brain aneurysm. Mom was always very active, energetic and never sick a day in her life until this past year. Mom was a very heavy smoker for over 50 years, she only gave it up while in the hospital this past February.
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
LRS
 
Posts: 254
Joined: Fri Jan 04, 2008 12:57 am
Location: Greensboro, NC

Who we are.

Postby drbleem » Mon Apr 07, 2008 3:24 pm

NAME: Ren
RELATIONSHIP TO PSP: Father with PSP
PwPSP: John Bleem
DATE OF BIRTH: 5/7/34
DECEASED: --------
DIAGNOSED: 2/14/05
LOCATION: Havana, IL
ABOUT ME: Doctor, own my own practice. Married with 2 children.
BACKGROUND: Born Walsh, IL one of 7 kids. Air traffic controller, ARMY. BS Animal husbandry. Organic Dairy Farmer, 5 children.
Renold B. Bleem D.C.
"Luck is the residue of design."
drbleem
 
Posts: 0
Joined: Mon Apr 07, 2008 3:12 pm

Postby Pam & Doreen » Fri Apr 18, 2008 6:59 am

NAME: Pamela Berry
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Doreen
DATE OF BIRTH: Age 76
DECEASED: Still with us.
DIAGNOSED: 2006/7 not sure now
LOCATION: Manchester, England
BACKGROUND: Mum had always been very active but we noticed that her get up an go got up and went about 4 years ago. She started banging her left foot down whe she walked and then falling. She didn't seem to have enthusiasm for anything and I thought she had had a stroke. I tried to pursuade her to go to see her GP but she wouldn't until the symptoms became worse. When she finally did they diagnosed PSP. Two years ago she fell and broke her leg so they wouldn't let her live at home any more. She now lives in a nursing home and she is very badly disabled by PSP.

Pam
Pam & Doreen
 
Posts: 0
Joined: Fri Apr 18, 2008 6:48 am
Location: Manchester, England

Who we are

Postby CuevasLoper » Tue May 06, 2008 8:16 pm

NAME: Sergio Cuevas
Relationship to PSP: Family Friend with PSP
PwPSP: Gary Loper
Date of Birth: 12/20/1942 65 years old
Diagnosed: Miss diagnosed July 2006, PSP December 2006 symtones since 2005.
Location: Originally South New Jersey, USA now residing in Cuernavaca, Mexico "City of the Eternal Spring"
Background: Gary was retired for 7 years before his PSP diagnosis, he was single and very much active as he worked for a golf course in NJ.

This disease struck us at a young age, Gary being 63 and me being only 28. I have helped Gary since July 2006 part time, and full time since April 2007. We don't know what stage he could be but I would say stage 2.
CuevasLoper
 
Posts: 8
Joined: Sun Feb 03, 2008 4:49 pm
Location: Cuernavaca, Mexico and New Jersey

Who we are

Postby dorothy p. wallace » Wed May 07, 2008 10:39 am

Name: Dottie Wallace

Relationship to PSP: My husband has PSP.

PwPSP: Roy G. Wallace

Date of Birth: August 19, 1934

Diagnosed in 2006, symptoms from 2004

Location: Georgetown, TX

Background, mine: I was born in Palestine, TX, schooled in Houston. Roy was in the AF for 27 years, so we moved around and lived at 17 different addresses. We have been married 51 years and have 2 sons, one of whom has recently moved here, moved in with us, to help take care of Roy. I'm an RN. Roy always took care of all our finances, but now I'm trying to do that. He was always the leader of the family, but now his judgement and memory are suffering the effects of PSP, so as I told him, now we have to do what I say, Heaven help us! LOL

Background, his: Roy was born in Jacksonville, TX, was a Boy Scout, and a graduate of Texas A & M, as an industrial engineer, and has 2 Masters Degrees from USC. He always planned to enter the AF, where he was a Colonel when he retired. He loved being in the AF. In Viet Nam, his most memorable experience was helping to airlift an entire village to safety, including their pigs. The villagers wouldn't leave without them. He is considered to have been exposed to Agent Orange.
After retiring in 1985, he worked for H&R Block, in AZ, for many years, where he taught tax preparation and helped edit a book on Arizona taxes.
He's had symptoms since 2004, was diagnosed with Parkinson's in 2005, then with PSP in 2006. He's probably in stage 3, is wheelchair bound, has swallowing problems, and speaks very softly; he's very slow, taking an hour or more to eat a meal, and has mild dementia. We thicken his liquids to honey consistency with Simply Thick, and he gets a weekly massage. We are committed to take care of him here at home, and have a wonderfully caring caregiver a couple of days a week. He's doing pretty well, but says he wouldn't wish this disease on his worst enemy!
Dottie

My husband of 54 yrs, Roy, b. 1934,, Symptoms since 2004, diagnosed May, 2006, d July 19, 2010
dorothy p. wallace
 
Posts: 35
Joined: Thu Sep 13, 2007 4:31 pm
Location: Georgetown, Tx 78633

Postby AR » Sat Jun 07, 2008 9:39 am

NAME: Andrew
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Anne
DATE OF BIRTH: 22/1/42
DIAGNOSED: 9/2004.
LOCATION: Ireland
BACKGROUND: Born in Northern Ireland to English parents, moved to Wales, then Liverpool, then Dublin. Keen to become a nun at 16, her shocked father sent her to live in Paris, just in time for the Algerian riots. Married in 1965. Smoked since 13. And like an awful lot of women in Ireland and elsewhere during the 70's, was prescribed tranquilizers ( notably Diazepam ) for every ailment.

Loves animals, owned many dogs, reared a prize winning champion greyhound. Later owned many cats. Voracious reader, could quote from literature far and wide, seemed to know the name of every plant or tree.

2001 on -> Slipped, broke ankle. Then a car crash. Had a bad fall down stairs, fell unconscious, ended up in hospital. Speech became slurred late 2003. Diagnosed with 'Ataxia'.
Entered nursing home in March 06. Lost speech October 07. Eyesight poor, botox injections used to help, but no more. Lost a lot of weight Jan08, feeding tube inserted May08. Falls out of bed and wheelchair often. Communicates by pointing, one finger for no, two for yes ( or is it the other way around? She keeps forgetting.. ). Orders clothes from catalogues, rarely writes cheques to anyone.
Last edited by AR on Thu Dec 18, 2008 7:36 am, edited 1 time in total.
AR
 
Posts: 0
Joined: Sat Jun 07, 2008 8:57 am

Who we are

Postby sher » Thu Jul 24, 2008 9:57 am

Name: Sherri
Relationship: Wife
PWPSP: Tony
Date of Birth: 1939
Diagnosed: 08/2006 Symptons since 2004 and before (now that I know more)
Location: Kilgore, Texas
PwPSP Background: Tony, born in Kentucky, athletic, played football in college. Retired Major in Marines. We have been married 23 years. Worked for 17 years in manufacturing, retired at 65. Noticed signs of forgetting words, slurring (thought he was drinking during the day while I was at work), but he wasn't. He started having falls, times when he looked like no one was home. I think he is at stage 3. Uses walker, when we remind him. Has started choking on some foods. His vision is getting worse, hard to watch such a outgoing person change so much. Thought we would be traveling and playing golf in the golden years.
My Background: Born in Texas and have two children and two grandkids. Work in accounting for a small company. In the process of hiring a sitter.
sher
 
Posts: 3
Joined: Wed Jul 23, 2008 11:27 am

Postby cats1424 » Mon Aug 18, 2008 5:48 pm

NAME: Diana
RELATIONSHIP TO PSP: Husband with PSP
PwPSP: James D. Ewell (Donnie)
DATE OF BIRTH: 10/43
DECEASED:
DIAGNOSED: 3/28/2005, after examinations by countless physicians, several misdiagnoses and a lot of frustration. Symptoms for at least 4 years before dx, now stage 3 enterting stage 4
LOCATION: Chesapeake, VA
BACKGROUND: Donnie- Grew up in a rural farming community. He remembers standing outside as a child watching the crop dusters all the time spraying the fields. His family raised some hogs and chickens. The hog pen and chicken coop was about 50 feet from the family's well water that they using for consuming and bathing. As a young teenager he picked vegetables in the same fields that had been crop dusted for spending money. As an adult he worked for Va Dept of Transportation as an Inspector building bridges and roadways constantly inhaling car exhaust and asphalt fumes.
BACKGROUND: Diana- 54 years old, we have been married almost 35 years. We have one daughter and we will be grandparents in 7 months. I've worked at a local hospital for 16 yrs as a Health Info Services technician after being a stay at home Mom for 14 years.
Diana- Husband diagnosed March 28, 2005. Received his angel wings September 17, 2008 64 years old

Whether it's the best of times or the worst of times, it's the only time we've got.
Art Buchwald
cats1424
 
Posts: 365
Joined: Sun May 29, 2005 9:00 pm
Location: USA

Postby michaelat » Wed Aug 20, 2008 11:17 am

Name: Kathy
Relationship: Mother with PSP
PwPSP: Dorothy
Date of Birth: 05/01/1921
Diagnosed: 12/04 Difficult diagnosis because eye function not as affected and absolutely no dementia
Location: Cleveland, OH
Background: One of 13 children, grew up in a rural setting, helping with farming chores. As an adult she worked as a social worker, taught 1st grade, worked as a nurses' aid in a hospital, worked as a child care worker in an infant day care, did a variety of volunteer work, was primarey care giver to my father (her husband) for 9 years after his stroke until his death. H/O colon cancer and H/O colon cancer in siblings. One sibling died with Parkinson's. She had surgery in August 2003 for colon cancer (3rd incident of colon cancer) and was disoriented and barely awake for a week after her surgery until we demanded that the doctor remove the pain infusion that was going directly into her spine. She had to learn to walk again. She also had 9 months of chemo. She never returned to pre-surgery self, and began to exhibit symptoms of PSP over the next two years. Quickly deteriorated. My siblings and I care for her in her home -- now needs total care.
michaelat
 
Posts: 2
Joined: Wed Aug 13, 2008 12:35 pm

Postby TRINA » Thu Sep 18, 2008 10:25 am

NAME: Katrina
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Janet Russell
DATE OF BIRTH: 12th October 1950
DIAGNOSED: January 200
LOCATION: Freeport, Grand Bahama, Bahamas
BACKGROUND: I live in a country where there are a little over 300,000 people and there is very little known about this illness. I stay online to the website to encourage and inform me. I am 30 years old and my mo lives with me, I will continue to do my best,
TRINA
 
Posts: 1
Joined: Tue Feb 12, 2008 10:45 am
Location: BAHAMAS

Postby inot » Wed Sep 24, 2008 12:47 am

NAME-Toni (inot)
RELATIONSHIP TO PSP- mother has PSP
PERSON WITH PSP- Elizabeth "Betty"
DATE OF BIRTH - 04/29/33, age 75
DIAGNOSED - 2004 (misdiagnosed before that with depression)
LOCATION - Northern California
MY BACKGROUND - Married, 2 small girls, stay at home mom. Husband works at the University in the IT department.
BACKGROUND ON PWPSP - Born in Glasgow, Scotland. Moved to San Francisco, California in 1955. Met my father at an English Pub. (Father is from London, England). Mom used to work in banks prior to being a stay at home mom. Helped take care of home business and apartments. Avid gardener...green thumb and letter writer. I miss her daily journaling. Mom was an alcoholic for years and battled depression. Initially diagnosed with depression...medication, Electro-Shock Therapy, with no changes. Slow deterioration.
Stage 4
inot
 
Posts: 3
Joined: Sun Sep 21, 2008 12:45 am
Location: Northern California

who we are...

Postby momsbaby » Wed Sep 24, 2008 2:16 pm

My mom was my hero.

NAME: Diane
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Geneva
DATE OF BIRTH: May 27, 1927
DECEASED: September 19, 2008
DIAGNOSED: 5/27/2004 symptoms since 2001
LOCATION: Renton, WA
BACKGROUND: Mother was born in Idaho, has 3 children. Retired from the Boeing Company where she worked as a dispatcher.
Diane
momsbaby
 
Posts: 8
Joined: Fri May 28, 2004 1:27 pm
Location: Maple Valley WA USA

Re: Who are we....

Postby tony111b » Sat Nov 15, 2008 7:56 pm

NAME: Anthony
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: My Beautiful Mom Annette
DATE OF BIRTH: 09/11/1952
DIAGNOSED: October 2004
LOCATION: Limerick Ireland
BACKGROUND: My Mother was born in Limerick in the 1950s, not long after her own mother died (my grandmother) my father and i started to see signs that things warned right as my mom kept on falling and was forgetting her words, she was diagnosed in October 2004, and she has started to deteriorate since, she worked hard all her life making my life as comfortable and bright as she could, Now I'm repaying her by helping her get through this.... even though im only 18.........
My Beautiful Caring mother was diagnosed with PSP in 2004 She Recieved her angel wings on the 7th of December 2008
tony111b
 
Posts: 7
Joined: Fri Nov 14, 2008 8:39 am
Location: Limerick Ireland

Postby momof3 » Sat Nov 15, 2008 8:21 pm

NAME: Laura
RELATIONSHIP TO PSP: Daughter
PwPSP: My Mom Jan
DATE OF BIRTH: 07/11/1937
DIAGNOSED: October 2008
LOCATION: Harford County, Maryland
BACKGROUND: My mother and father lived most of their lives outside of Annapolis, Maryland. They enjoyed sailing, have rode their motorcycle to 49 out of 50 states, and lived in the Australian outback for four years. When we noticed symtoms that something was wrong, they sold their boat and their house and moved a mile from me in rural northern Maryland. She raised three children, has 9 grandchildren, and has been married for almost 50 years. I can't say enough about her. Nobody deserves this.
momof3
 
Posts: 21
Joined: Fri Oct 31, 2008 11:39 am

Postby joseluis » Sun Nov 16, 2008 11:32 pm

NAME: José Luis
RELATIONSHIP TO PSP: son
PwPSP: Lupita
DATE OF BIRTH: Sep 17th, 1947
DIAGNOSED: Nov 2008
LOCATION: Guanajuato, Mexico
BACKGROUND: Was born in Mexico City, used to be a very active high school teacher, we started noticing she had problems by the end of 2004, but without really knowing what was going on because we got several different diagnosis, until last week with the last studies that were made to her and it's almost confirmed it's PSP.

ANTECEDENTES: Nació en la Cd. de Mexico, solía ser una muy activa maestra de secundaria, empezamos a notar algunos problemas físicos a finales del 2004, pero no sabíamos realmente que era lo que tenía por que nos dieron diferentes diagnósticos durante este tiempo, hasta la semana pasada, cuando le realizaron los últimos estudios y ya casi es un hecho de que lo que padece es PSP.
joseluis
 
Posts: 0
Joined: Sun Nov 16, 2008 11:10 pm

Who We Are

Postby balzac000 » Mon Nov 17, 2008 6:21 pm

NAME:June Keith
RELATIONSHIP TO PSP: I am the daughter
PwPSP: Shirley Mazza, my mom
DATE OF BIRTH: 4/05/35
DIAGNOSED: 6/15/08 Symptoms of eye problems and falls for at least 3 years before diagnosis. Drs always said mom was just fine!! Tests said so.
LOCATION: Sebring, Florida
BACKGROUND: Shirley grew up in Port Howe, Nova Scotia. She moved to New York at age 18. Married. Three children. Became a nurse in 1964. Marriage ended in 1970. Worked the night shift, 11 p.m. till 7 a.m., for 40 years! Moved to Florida in 1978. Retired from nursing in 1998. A very popular and energetic woman.
balzac000
 
Posts: 61
Joined: Tue Jul 08, 2008 6:14 pm
Location: Key West, FL

RE: who we are....

Postby beachdrmns » Mon Dec 08, 2008 11:17 pm

NAME: Ann
RELATIONSHIP TO PSP: Mother with PSP (also, aunt with PSP confirmed with autopsy)
PwPSP: Sally
DATE OF BIRTH: 10/14/31
DECEASED: December 31, 1993
Location: New Jersey, USA
DIAGNOSED: officially Oct 1993 though she had symptoms since 1980 or so. Initially diagnosed with Parkinson's Syndrome and various mental illnesses.
BACKGROUND: Mother was married, 10 children. Worked as a secretary then a mother once her first child was born. Luckily, we had a father who was wonderful and totally devoted to her. He and my younger siblings were there day and night to help her.
beachdrmns
 
Posts: 2
Joined: Mon Dec 08, 2008 11:04 pm

Who are we?

Postby Tracey Noel » Fri Jun 05, 2009 11:06 pm

Tracey

My father Don has psp. Age 81

Diagnosed Oct. 2007. Symptoms for about 2 years previously.

He was a program director/radio announcer. Acted in plays for local theater group. Owned many businesses.

Home is Feeding Hills, MA. Lives with my mom (Phyllis) who does an excellent job caring for him. My one brother and 3 sisters and I help as much as we can. We all visit as much as possible; including grandchildren.

Dad is always smiling and laughing, even when he falls. He's always been optimistic ~ Thank God he still looks at the bright side!

I am 41, the youngest of 5 kids. Today, June 5, is my parents 56th wedding anniversary.

Nice to meet you, everyone.
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
Posts: 23
Joined: Thu Jun 04, 2009 5:06 am
Location: massachusetts

Postby aurie » Tue Jun 30, 2009 1:52 pm

Name: Aurie
Relationship: Daughter-in-law
PWPSP: Vic
Date of Birth: 1934
DECEASED: June 6th, 2010
Diagnosed: 09/2008. misdiagnosed with PD in 04/2005, symptoms since summer 2004 (1st symptoms were quiet, seemed depressed, unexplained sudden falls)
Location: upstate NY

PwPSP Background: Was in the Navy for 6 years while in his 20's, then worked for the government (in the offices) at a factory that handled steel until he retired at 62. Was also a teacher.
In the winter of 04 he could ice-skate better than his grandsons, had lots of stories to tell and many jokes. He spent his retirement traveling and golfing with his wife. And now he cannot walk unassisted. He has a walker, but forgets to use it. He is never left alone. His eyesight is fast declining, he is starting to loose weight. He coughs, speaks low and slow. He also never complains, loves company, he's a trooper.

My Background: I've been married to Vic's son for over 12 years, we drive once a week and help my MIL with the maintenance of the house and just enjoy our days off with them. I've known Vic since 95 so I have the priviledge to have known him before this disease brought him to a stand still. My in-laws truly are a second set of parents to me since my family is thousand of miles away and I see them only once every other year. My MIL and I speak almost daily and I always look at this forum for solutions to problems they run into.
Last edited by aurie on Wed Jun 09, 2010 5:11 pm, edited 1 time in total.
aurie
 
Posts: 5
Joined: Fri Jun 26, 2009 9:29 am

Edited w/date of death

Postby daughterofanangel » Mon Jul 13, 2009 8:49 pm

NAME: Nicole
RELATIONSHIP TO PSP: Daddy with PSP
PwPSP: Roy Swing
DATE OF BIRTH: 2-7-37
DECEASED: July 17, 2009
DIAGNOSED: 2006, previously misdiagnosed as having a stroke and Alzheimers. Symptoms began around 2003. He is in the very final stage at this time.
LOCATION: Lexixngton, North Carolina, USA
BACKGROUND: Married, 2 children, owned gas station/garage for most of his life. Even with this terrible disease, he is always smiling and happy and never complains.

I am so glad to find you all, even if it is at the end of my daddy's life.
Last edited by daughterofanangel on Mon Jul 20, 2009 7:23 am, edited 1 time in total.
daughterofanangel
 
Posts: 5
Joined: Mon Jul 13, 2009 8:34 pm

Postby ailbee » Fri Jul 17, 2009 9:02 am

First of all hello to everyone and thank you very much for accepting me in your community and the forum.

I have a younger brother who suffers from Progressive Supranuclear Palsy and he just got the diagnose so that is the reason why I registered in this forum. To find out more about this disease and to maybe help my brother living an easier life. I guess this is the least I can do.

I am married and pregnant and my brother who is three years younger than I am just got the diagnosis about one week ago. now I actually do not know what I could do to help him and make life a little bit easier.
ailbee
 
Posts: 2
Joined: Fri Jul 17, 2009 8:54 am

Postby erina » Sat Feb 13, 2010 4:40 am

NAME: Evangelia
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Dimitra
DATE OF BIRTH: 1938
DIAGNOSED: Octomber 2009, symptoms since 2006-2007
LOCATION: Greece
BACKGROUND: She was a teacher and a very energetic person, yet it is so sad to see all this happening and mostly for herself who suffers the most.

I am 29, living with my parents, my dad is 75, and we are trying to make the best for my mom.
erina
 
Posts: 4
Joined: Fri Feb 12, 2010 1:58 am
Location: Greece

Postby Nelli » Thu Apr 08, 2010 8:10 am

NAME: Nelli
RELATIONSHIP TO PSP: Father with PSP
PwPSP: Esa
DATE OF BIRTH: 1952
DIAGNOSED: end of 2007, symptoms since 2005
LOCATION: Finland
BACKGROUND: retired CEO

I am 28 with 2 kids, girl soon to be 5 y/o and boy just over 1 y/o. I take care of dad on weekdays for 4h/day and he has another personal assistant for the other 4h whilst my mother works 8h/day. My mother is the main caregiver. Dad is probably in the latter stages if this bizarre disease.
Nelli
 
Posts: 2
Joined: Thu Apr 08, 2010 8:00 am
Location: Finland

Postby toddrfitz » Tue May 18, 2010 12:43 pm

NAME: Todd
RELATIONSHIP TO PSP: Father with PSP
PwPSP: Pete Fitzsimmons
DATE OF BIRTH: 12/23/43
DIAGNOSED: 2007, symptoms noticed in 2005 (maybe earlier) and originally diagnosed with Parkinson's 2006, changed to PSP in 2007.
LOCATION: Walnut Creek, CA
PwPSP BACKGROUND: My dad was a succsessful salesman until he acomplished his goal by retireing at the age of 55. We started noticing something was wrong in his early 60's. He was slurring his words and had poor balance but we attributed it to him drinking more than he should. We noticed that wasn't the case while on vacation in December of 2005 when he was slurring and stumbling and we knew that he hadn't had anything to drink. The first thing we looked at was reducing or eliminating some of the medications he was taking that we thought may be the cause of his problems. When that proved to be unsuccessful we came up with the Parkinson's diagnosis. After a stint of trying the standard Parkinson's drugs without any improvement he was re diagnosed as having PSP. He has been living in an assisted living since October of 2008.
BACKGROUND: I am 28 and live and work near my father. I usually get by to see him a couple times a week.
Last edited by toddrfitz on Wed May 19, 2010 11:42 am, edited 1 time in total.
toddrfitz
 
Posts: 37
Joined: Tue May 18, 2010 12:19 pm
Location: Bay Area, CA

Postby Robin » Tue May 18, 2010 7:44 pm

Todd -
Sorry to read about your father. I've sent you a private message (since you don't have an email listed in your profile) about our SF Bay Area PSP support group. You can get some general info here:
http://forum.psp.org/viewtopic.php?t=8344
You are welcome to join us. Our group of 100 PSP/CBD caregivers is probably half spouse caregivers and half adult children caregivers.
Robin
Robin
 
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Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

"I Want to Die"

Postby swagman » Mon May 31, 2010 8:24 pm

I have lost touch with this forum for a few months. Hope I am still 'connected'. My wife, now 72 and in about sixth year of PSP symptoms continues her slow decline.
She is chair-bound; her trunk and neck are now rigid. She cannot look down. Cannot lift her arms and can only grasp with thumb and forefinger. I now feed her bite by bite, in addition to moving her from bed to bath to chair, etc.
If she has dementia, it is only slight. It's difficult to tell as she is restricted to one-word sentences; and then with very low volume and very garbled pronunciation.
She has a fear of being alone; fears being trapped by fire; etc.
When she says she wishes she could die, I really feel it's because of the burden she perceives she places on me.
Jim Lehr (aka SWAGMAN)
swagman
 
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Location: MARYLAND

Postby eplowman » Tue Jun 01, 2010 4:53 pm

Jim,

Thank you for the update. I'm sorry to hear of the continuing decline. My late Rose and I were on the same journey as you and your sweetheart, only several years ahead of you. Stay close to her, give her all the love and emotional support you can muster. That's what she needs most.

Rose was fully aware to the end, although she couldn't speak at all the final year and a half. We communicated: I had to speak slowly and simply so that she could "process" what I was saying. When I wanted to find out what was on her mind, I would play a sort of "Twenty Questions" game. Her thumb up was "Yes," her index finger up was "No."

Let's keep in touch.

All the best that can be to you both.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
eplowman
 
Posts: 3658
Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Postby uncadiane » Sun Jul 11, 2010 9:30 pm

NAME: Diane
RELATIONSHIP TO PWPSP: Wife
PWPSP: Harry
BIRTHDATE: 10/12/1952
LOCATION: Lonaconing, Maryland, USA
DIAGNOSED: June 2010. Symptoms for probably at least 2 years, maybe longer.
MY INFORMATION: I was born and raised in this county. I'm a Human Resources Director for the county health department. Harry and I have been married for 20 years and have no children. The loves of our lives are our nephew and nieces--Zachary, Emily and Abigail. We have several 4-legged critters too--Mysti (yellow lab/shepherd mix); Esau, Sherman, Lizzie, Charlotte, and Nubby (cats); and Anna (hairless rat).
PWPSP INFORMATION: Harry was born and raised in this little town; several generations of his family live here. He spent some years working small jobs--fiber manufacturing plant, furniture delivery, town maintenance; then spent 18 years training and working as a substance abuse counselor. He started drinking when he was a teenager and drank heavily for about 10 years. Then he got treatment and was sober for about 20 years. At that time he broke his back in a car accident and was placed on narcotic pain killers. The narcotics awakened "the sleeping giant" of alcoholism/addiction. He has been abusing either prescription pain killers or alcohol almost steadily since 2001. He is sober at present. The drinking & drug use make it difficult to determine when his symptoms really started.
uncadiane
 
Posts: 22
Joined: Tue Jun 29, 2010 10:00 pm
Location: Maryland

Postby Tio » Mon Jul 19, 2010 9:27 am

NAME: Tio
RELATIONSHIP TO PSP: Mother with PSP
DATE OF BIRTH: 1925
DIAGNOSED: 2008 with symptoms, as we look back on it, since 2004-05
LOCATION: Florida
BACKGROUND: Vibrant person with a full life in now in what appears to be later stages of the disease with the symptoms that are so fully discussed in this forum.

I'm signing in, so to speak, not such much to add anything specific to the discussion, more to let you know that the information you provide here is so helpful in understanding what is actually occurring and how to assist with care.
Tio
 
Posts: 1
Joined: Sun Jul 18, 2010 3:00 pm

Postby eplowman » Mon Jul 19, 2010 9:48 pm

Welcome to the forum, Dio.

Sad to learn about your mother's struggle with PSP. It is a struggle most of us know about from our own experiences as caregivers (and, in some cases, as PSP patients -- those who joined the forum while in an early stage of the disease). You are among knowing and caring friends.

Thank you for the kind words about the value and helpfulness of the information you have received here. We all have benefitted from this sharing with one another what we have learned about PSP and how to provide good care for our loved ones,

ed p.

------------------------------------
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
eplowman
 
Posts: 3658
Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Postby syby88 » Thu Jul 22, 2010 4:08 am

NAME: Sophie
RELATIONSHIP TO PSP: Mother - PSP
DATE OF BIRT H: 1940
DIAGNOSED: supposedly since 3 or 4 years but contact had not been intensely last decades
LOCATION: Germany/Austria

Actually I've been involved with this forum about now half a year or more. So many helpfull comments and advices I just consumed on a passive way. As I read the last comments in this thread, I also just want to say thank you for all your words and work in this portal. Please keep going on that way so that others can benefit as well.

All the best
syby88
 
Posts: 0
Joined: Thu Jul 22, 2010 3:44 am

New here.. for Mom

Postby icky_thump » Sun Oct 17, 2010 9:38 pm

NAME: Paul
RELATIONSHIP TO PSP: My Mother has PSP
PwPSP: Shirley
DATE OF BIRTH: Dec. 1937
DECEASED:
DIAGNOSED: 2008. Falls began in 2006.
LOCATION: St. Louis, MO, USA
BACKGROUND: Mom occasionally worked outside the home. Mostly though she was a wonderful wife and stay at home mom. I'm very blessed to have the parents and upbringing I had. Mom loves God and loves her family and friends and simply enjoys spending time with people. She has a great spirit and silly sense of humor. I'm amazed by her courage and attitude in the face of what she is going thru. She sits in a chair all day as she can no longer get herself out of it. Yet I've never once heard a complaint from her other than being bored. She has such a positive attitude. Everyday she believes the Lord is going to heal her completely and everyday she visualized herself walking around in every room in the house.
icky_thump
 
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Joined: Sun Oct 17, 2010 8:27 pm

WHY PSP?

Postby beenthere » Fri Dec 17, 2010 11:55 am

I looked over many posts and seems 1 very common thread.....chemicals where they lived or worked....the one who lived near a paper pulp plant...am I wrong that in the process they release dioxon agent orange? Pesticides in fabric and also formaldyde in new clothes. Working in fields picking crops....tons of pesticides and herbicides...my husbands stats:
PSP: Never diagnoised lyme was he was born 9/3/39
Worked with welding....in car and truck repair. Worked with poly-foam deadly chemical.
First Synptom 1977 shaking and falling over. Diagnoised as MS.
Tested for Lyme in 1998 Positive titers. Treated by then late stage Lyme.
Set free to cross over in 2001 after being bedridden or wheelchair bound since 1982.
.......Finally the world is understanding chemicals kill, disable and destroy yet they now feed pesticides to the roots of vegetables and trees to poison the food.....and we eat it. Canned goods now have a shiny liner...it is a form of plastic a poly one of the most deadly chemicals and our food with water sits snug in a toxic can? Have you noticed the very rich and famous usually have a farm where all their food is grown organically? Gee, wonder why? If WE as people all over the world don't boycott this adding chemicals to growing food, feeding vegetarian cows dead cows, same with chickens and the bunched up in cages chickens pooping on each other and all the toxic and poison things they are doing to our air and food...including all the radio waves which have radiation in the air from cell phones and cell towers we will all be babbling disabled helpless people .....can we allow this to continue?
beenthere
 
Posts: 6
Joined: Fri Jul 03, 2009 8:22 pm
Location: edgewater, fl

Postby DeAnna B » Mon Apr 11, 2011 8:20 pm

NAME: DeAnna
RELATIONSHIP TO PSP: My Mother has PSP
PwPSP: Gail
DATE OF BIRTH: June 1945
DECEASED:
Mis Diagnosed: 2009 Parkinsons
DIAGNOSED: 2010. symptoms began in 2002.
LOCATION: Dallas, TX
BACKGROUND: My mother grew up in Oklahoma. Mostly a stay at home once married with kids, but did some secretarial work once we were in our teens and worked all the way up to 2008 after a fall out of her car which broke her elbow. She was a good hider of her symptoms, and not until my siblings and I noticed a personality change did we convince my dad and my mom to seek professional advice.
Mother has PSP
symptoms since 2002
misdiagnosed Parkinsons 2009
diagnosed PSP August 2010
DeAnna B
 
Posts: 7
Joined: Sat Apr 02, 2011 2:59 pm
Location: North TX

Who are we...

Postby syork » Tue Apr 19, 2011 2:17 pm

NAME: Sherry
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Jean
DATE OF BIRTH:1932
DECEASED: February 14, 2012
DIAGNOSED: 2008 symptoms noticed and diagnosed with Parkinson's Changed to PSP August 2010
Location: Tennessee
PwPSP Background: retired manufacturing and very energetic, loved to work in the yard with her flowers and vegetable garden.

Background: I am one of two daughters taking care of our Mother in her home. She was recently signed up with Hospice care in November 2011. She has a daytime care giver (we are both still trying to work) and my sister and I take care of her at night. She is basically bed bound and has a peg tube. Peg tube was placed after a bout of pneumonia. Moms head bends forward instead of the common backward position related to PSP. Went to be with my Father and Brother February 14, 2012.
Last edited by syork on Mon Feb 20, 2012 2:46 pm, edited 2 times in total.
syork
 
Posts: 10
Joined: Wed Jan 12, 2011 3:19 pm
Location: Tennessee

Postby neurobadger » Fri Apr 29, 2011 11:30 am

NAME: Katharine
RELATIONSHIP TO PSP: Niece
PwPSP: Uncle
DATE OF BIRTH:1931 (death 2011)
DIAGNOSED: 2010
Location: PwPSP Missouri, self Virginia

I was told my uncle killed himself today; he suffered from PSP. It sucks horribly.

I am a neurobiology student whose research interest is invertebrate neurobiology, on the way to getting my PhD. I have seen a few papers floating around about invertebrate models of tauopathies; this may spur an additional subtopic to pursue in my research.
neurobadger
 
Posts: 1
Joined: Fri Apr 29, 2011 8:43 am

Postby eplowman » Fri Apr 29, 2011 9:09 pm

So sorry to hear the shocking news.

Something like this can bring the family members closer together than ever before. I hope that will be the case with you and yours.

It's great to know that you will be on the front lines, digging out keys to better understanding of these neuro disorders and opening doors to possible prevention or treatment and cure.

I hope you stay in touch and keep us informed of your activities in this regard.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
eplowman
 
Posts: 3658
Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Condition of my mom

Postby Mitch70 » Fri Jan 06, 2012 6:11 am

NAME: Matthew Frith - Age 41
RELATIONSHIP TO PSP: I am the son of a Mom with PSP
PwPSP: Mary Mount
DATE OF BIRTH: 1/31/41
DIAGNOSED: 2008 I guess
LOCATION: Fountain Valley, CA
BACKGROUND: Housewife who took care of 2 girls and 3 boys. I'm the youngest of her kids. Unfortunately, they don't think she's their mom anymore so most of them don't call her and maybe see her 2 to 3 times a year. My gf lives with us and watches over here while I go to work.

Her current problems
-------------------------------
1.Can't speak audibly, so we use hand signals to help her get her words across.
2.Incontinence
3.Can't walk without me carrying part of her weight.
4.Balance is horrible
5.Trouble swallowing
6.Trouble sleeping
7.Pressure sores on her lower back (golf ball size), right hip and lower right ankle.
8.Back problems. Her right scapula seems to be frozen in a position that sticks out a little.
9.She leans to the right when walking.
10.She gets zoned where she doesn't move when walking.
11.She looks genuinely depressed. I want to take her out on vacation with us to Las Vegas, but on the trip she looks like she's suffering.
12. The last thing that rings in my mind over and over again is 6 months ago she told me she feels like sht.

I cannot complain about anything, because every time I do, I think about what she's going though and I feel completely selfish I try to keep myself calm at all times, but there are times that I get frustrated and get mad at her. Then later I feel guilty, because she's already suffering and I only make it worse by getting mad at her. My other bothers and sisters ignore her. I want to leave them with the memory of the mom that they ignored when she needed them, but I realize that that too is selfish of me. I don't get the other kids to come over enough and again I feel guilty for that too, but the worst part of it all is that I don't do enough research and come to these forums to find ways that I can help her, because it only reminds me of the problems that she's having and again, I feel guilty.

I do whatever it takes though to keep myself detached from everything that's going on when I'm with her. I figure the last thing she needs to see me doing is to break down and cry. My gf is under a lot of stress and I realize that I have to do my best to keep everything together.

Sorry to bring anyone else down on this. It was nice to find a place that I could at least let this out. To be honest, I think I might have been holding it in for too long.
Mitch70
 
Posts: 5
Joined: Wed Nov 23, 2011 1:46 am
Location: United States

Postby Robin » Fri Jan 06, 2012 10:41 am

Mitch -
Sorry to read about your mom but welcome to this Forum. I hope you'll post again (perhaps by starting your own thread on something you'd like to ask a question about or vent about).
Robin
Robin
 
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Location: USA - Northern CA

Postby Tracey Noel » Mon Jan 09, 2012 12:42 pm

Mitch, from what I gathered reading your post, you should feel very proud of yourself. You seem to be level headed and looking out for you mother's best interest before your own. It's unfortunate about the relationship that some of your siblings have with her. That's their decision and they'll have to live with the results. Your mother is very fortunate to have you and your girlfriend. I hope you do let out a good cry - or one hundred. Do it every morning and night when you're not with her, if you want. Those tears might just release enough of your frustrations to allow yourself more patience when you're with her again.

When I was caregiving for my father I felt the same way as you about these forums. As a matter of fact, I still get a lump in my throat and tears in my eyes reading - and reliving - each experience. He's been gone a little over a year now. Nothing will ever change the reality of what this disease stole from him and us. But believe me, I feel completely satisfied with the love, compassion and respect I gave him throughout it all. THAT was in my control.

Take care
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
Posts: 23
Joined: Thu Jun 04, 2009 5:06 am
Location: massachusetts

Re: Who are we....

Postby hamcghee » Tue May 01, 2012 1:13 pm

NAME: Heather
RELATIONSHIP TO PSP: Mother has (late stage) PSP
PwPSP: Jennifer
DATE OF BIRTH: 7/2/52
DECEASED:
DIAGNOSED: 12/2011 - symptoms since approx. 2005
LOCATION: New England

BACKGROUND: Mom is 59 y/o and resides in assisted living. She worked many years tending bars and doing administrative work for a family engineering firm. Had silicone implants put in 25+ years ago. Has many different allergies.. metals, mold, etc. I wonder if there is any connection between the silicone and PSP.

I am a 35 y/o only child, married, and mother of a 6 y/o little girl. I work part-time and visit my mom almost daily. My dad passed away very unexpectedly last summer, and was a big turning point in the progression of my mom's disease.
hamcghee
 
Posts: 36
Joined: Thu Apr 26, 2012 11:53 am
Location: Massachusetts

Re: Who are we....

Postby Anabela Quitério » Wed May 02, 2012 1:26 pm

NAME: Anabela
RELATIONSHIP TO PSP: Daugther
PwPSP: Felice
DATE OF BIRTH: July 3,1942
DIAGNOSED: May 7, 2010 - misdiagnosed with depression in 2008 and misdiagnosed with a problem of the inner ear in 2009 (due to her dizziness and balance)
LOCATION: Lisbon/Portugal

PwPSP BACKGROUND: Mother of three children, widow (my father died 14 years ago)! Born in Hong Kong and raised in Macau! Has been all her life a housewife, my mother throughout her life has always been a healthy woman, until she began to complain of dizziness and problems with vision, her personality also began to change in 2007! She had her first fall on Christmas Eve 2007 (if there were more falls before that I don't know, my mom never told me if she had already fallen more times before). In 2008 she began making medical examinations, but all was well!

My mom current problems are:
- Incontinence
- Can't walk without help (her balance is horrible)
- Weakness in her legs, sometimes seem frozen and takes a few minutes to take a step
- Pain in her right leg when walking
- Can eat, occasionally choking
- Speech dragged
- Blurred vision, she can't look down
- Showing some dementia
- Laughing and crying constantly without any reason

MY BACKGROUND: I am the oldest daughter, I'm 50 years old, I am married for 28 years and mother of a son 27 years old. When my mom was diagnosed with PSP I was unemployed and so I became her full-time caregiver 24/7! I don't regret because all I want is the best for my mom!

This is my first post since I joined this forum, and I thank you all for being there supporting, counseling and caring about all who suffer and those who care! I have been learning so much from you! Thank you!
(Sorry if my English has some mistakes, I'm Portuguese and my English is not good enough)
Anabela Quitério
 
Posts: 1
Joined: Mon Dec 06, 2010 7:56 pm
Location: Portugal

Re: Who are we....

Postby Robin » Wed May 02, 2012 3:17 pm

Anabela,
Sorry you've had to join the Forum, but welcome. Your English is very good!
Robin
Robin
 
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Re: Who are we....

Postby eplowman » Wed May 02, 2012 5:55 pm

Yes, Anabela, welcome to the forum!

It appears your mom already is in what I would classify as a middle stage of classic PSP (known as PSP-RS, for Richardson's Syndrome). I am so-o-o sorry for her and you and other family members. But how wonderful for her that she has you by her side to care for her and help her with her needs.

The unexplained laughing/crying symptom is a common one for many with classic PSP. My late wife was a laugher; one of our PSP acquaintances was a cry-er. It usually is a phase these patients go through; as a rule, it doesn't last through the entire course of PSP, and there is nothing they can do to control it.

Please feel free to post a topic about her in the General Discussion section of the forum if and when questions arise. Include some of the same information you posted here so that all members will know and understand her situation better.

Take care of yourself, too, faithful caregiver! Stay strong.

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

Postby artzymommy » Mon Jul 30, 2012 9:51 am

NAME: Jennifer
RELATIONSHIP TO PSP: Stepdaughter
PwPSP: Angela
DATE OF BIRTH: Nov. 10, 1960
DIAGNOSED: 2010 - basically ruled out everything under the sun through several doctors. Finally diagnosed by a doctor in Florida I believe.
LOCATION: Oklahoma/USA

PwPSP BACKGROUND: Mother to 8 year old adopted daughter, stepmother to me (Jennifer), wife to my Dad for 25 years now. Worked as a CPA for a number of years. First exhibited symptoms with speech issues and problems with hand about 5 years ago. She is still in denial of the diagnosis, even with late stage CBD. In the past 6 months deterioration has been markedly worse.

My stepmom's current problems are:
- Can't walk without a walker (and frequently has falls even with a walker)
- Weakness in her legs
- very limited use of hands (alien hand)
- Usually can't eat without help to feed her, has trouble swallowing/chewing
- Very difficult to understand or incomprehensible speech
- Severe bradykinesia
- Severe rigidity over whole body
- Showing some dementia symptoms with unreasonable ideas/demands
- drooling

MY BACKGROUND: I am the oldest daughter, (stepdaughter to Angela). I'm 29, married, and mother to a 3 year old son with Cystic Fibrosis and Short bowel syndrome. I have degrees in marketing and management but have decided to go to grad school to become a Physician Assistant after spending much of my son's first 2 years in hospitals. I'm hoping my exposure to the medical field and patient advocacy will help me help my Dad in some way.
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Re: Who are we....

Postby Robin » Sat Sep 01, 2012 11:07 am

Jennifer,

How wonderful that you are getting your PA credential. I'm sure you will be able to help many people.

"Alien limb" refers to a specific symptom. It's where the person doesn't recognize that the limb is his/her own. The limb seems to have a mind of its own. Is that what Angela experiences? If so, that may be an indication she has CBD rather than PSP. There is no difference in treatment. The only way to know will be through brain donation. Has this topic been discussed in your family?

Robin
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Re: Who are we....

Postby aedaks521 » Fri Sep 07, 2012 2:54 pm

NAME: Alison
RELATIONSHIP TO PSP: daughter
PwPSP: Arthur
DATE OF BIRTH: August 14, 1938
DIAGNOSED: January 2012
LOCATION: Pennsylvania/New Jersey/USA

PwPSP BACKGROUND: Married to my mom 38 years. 3 adult children. He was in advertising sales for his professional life until a few years ago when his business hit hard times. The process to diagnosis was long and confused as my parents began seeing multiple doctors for a variety of issues seperately. He felt dizzy, described tingling in his legs/feet, vision issues, had been in an car accident and was diagnosed with PTSD as a rationale for some behavior changes, had difficulty sleeping (no sleep apnea at the time)...all treated by different doctors. Until he fell in November 2011 and had 3 spots of bleeding on the brain. This horrible scary incident ended up helping us advocate for one doctor to put the pieces together. There were times after this that he has what we believe to be seizure type incidents. Since this diagnosis he has deteriorated significantly.

My dad's current problems are:
- Can't walk without a walker (though he likes to try and can be very annoyed when we remind him)
- always tired, difficulty sleeping
- has trouble swallowing without coughing (though he knows he is supposed to do a chin tuck & double swallow)
- snippy with a mean tone at times
- sometimes difficult to understand speech, often will not use words lately
- Staring
- cannot look down
- incontinence
- difficulty keeping him involved in conversations
- has been hospitalized 1x for aspirational phemonia

MY BACKGROUND: I am the only daugher, I have 2 brothers. I am married with 2 children (5yr old and 15 month old). My oldest brother lives about 45 minutes away with his wife and 2 kids and my other brother is in Africa with his wife and child. In October my parents moved in with us do to some issues in thier home related to mold. They were in that house when my father had his first major fall. My mother is having a really hard time dealing with the diagnosis and the seemingly drastic changes in my fathers health & behavior. They are moving into their own place (a new place) within a month.
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Re: Who are we....

Postby eplowman » Sat Sep 08, 2012 5:05 pm

Welcome to the forum, Alison, and for introducing your dad to us.

It's good to know that your mom and dad will be close by in their new place.

Could you start a new topic over in General Discussion specifically about your dad -- does he try to feed himself, or does your mom feed him? And, could you tell us what prescription medicines, if any, that he is taking.

I see you have a Pennsylvania/New Jersey location. When I was in high school and the first years of college, I lived in Bristol, Pa., across the river from Burlington, NJ. Met and married my late Rose in Bristol. PSP took her from me 56 years later, in Virginia.

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

Postby KDupree » Thu Jun 20, 2013 7:34 pm

What a great idea! Have spent the last hour reading all of the posts. We all have so many of the same details to relay and yet so many different details of the progression of this disease to relay as well. One thing we all have in common is our love for the person with PSP and a desire to give them the very best care we can. Thank you for sharing your experiences and thank you, those part of the curepsp website, for providing so much information for us as caregivers.
Name: Kathy
Relationship to PwPSP: wife of 40 yrs
PwPSP: Tim
Date of Birth: 06/01/55
Diagnosed: PSP in March 2010 at UAB, Misdiagnosed August 2009 with "dementia of the Alzheimer's type"; symptoms began late 2008 with slurred speech and vision problems as well as personality changes and small accidents while driving.
Location: Opelika, AL
PwPSP Background: Oldest of 4 siblings; worked as a mechanic and service man at a service station; drove for a wrecker service; worked as a tire builder; started his own very successful used car business at the age of 23 for which he continued to run until he had to claim disability at the age of 55 due to the fast progression of PSP. Married for 40 yrs this year. He has been a wonderful father to 2 children and now has 4 grandchildren. He is a godly man well-respected in his church and community as well as in his profession. He literally ran his business in his head at all times. He did write information down, but was able to recall any number or detail about a vehicle, his banking, or personal life at any given moment. Because of this when he got sick, we were not able to learn everything we needed to take over the business for him as he quickly declined with a loss of speech and the loss of his ability to process ideas and relay details to us. The first year was a hard one for all of us-him in denial and us scrambling to learn what was happening to him. Very early on we lost the man we all knew-the fast talker, fast walker, and man on the move who always had something going on that he instigated. Our son now runs our business hoping to make his dad proud of him. To stay as healthy as he could, we walked 2 miles a day for 5 days a week for over a year even when we had to travel across town to stay in a heated or air conditioned space just to keep him mobile. Once it became too difficult for him to walk even with 2 people at his side, he quickly declined and has been primarily bedbound or wheelchair bound now for 1 1/2 years. Has had aspiration pneumonia 3 times, but recovered quickly. He is a strong willed man and is still fighting with all he has to beat this wicked disease. He does love his grandchildren and if any body can get a response from him at this stage other than me or our daughter, it is usually them. Our daughter is a PTA so her knowledge and experience have been invaluable in keeping her dad in good health.
My Background: Oldest of 4 siblings; elementary teacher 16 yrs; homeschool mom 6 yrs; resource teacher part-time 10 yrs; married 40 yrs this year to my teenage sweetheart; stopped teaching in 2012 to care for Tim at home and to assume the role of owner for our business etc.
Where we are now: our children live nearby so they are a great help since he requires 24/7 care; he has had feeding tube since Dec. 2011 and now has a g-tube for feeding/meds/hydration; friends, family, neighbors, church family rotate in and out here each night to stay with him so I can rest in another room while I care for him each day usually without help except when his condition requires it on any given day; Hospice has been here since Oct. 2012 and has been a great help with some of his meds and supplies and with ways to help us give him quality care. The support system I have of church family, friends and family have helped me overcome the day in and day out struggle to stay strong and focused. It is the hardest thing I have ever done yet it gives me the greatest joy to love this man through his weakest moments.
****Updated to give Tim's Homegoing details:
On Sunday, August 18, 2013, our beloved husband, father, son, Poppa, brother, and friend went home to be with Jesus. He endured a long week of rapid decline. On Thursday morning of his last week a hospice team came and stayed 24/7 until his passing on Sunday. None of us knew what to expect so I am thankful hospice was here to instruct us on ways to handle Tim's condition. We had stopped feeding him with the feeding tube on the previous Sunday, but continued to give some meds by mouth as tolerated. On Wednesday he was able to get in little amounts of fluid through his feeding tube so we gave meds there for a day, then used oral meds only beginning on Thursday. The final days were hard on us. During one 12 hr period he received liquid morphine, ativan, and atropine as often as every hour. By Saturday his heart rate and breathing were drastically different. His temp climbed to 108 degrees axialliary! We placed ice packs around him for hours. He never showed signs of complete organ failure, but by 1:00 a. m. Sunday, we knew his time was near. His body was giving up. His mom, daughter, son, close friends, and I sat by his bed or in the room praying, listening to worship music, and quietly telling him how much we loved him while letting him know it was okay to let go when he was called to heaven. Around 4:12 a. m. Tim took a breath and smiled. We knew he saw heaven. There he received his miracle and was healed of PSP. There was no more suffering! It was a sad, but blessed experience to have him at home. We were able to complete the brain donation without any issues. We now are waiting for the pathology report from Mayo in Jacksonville. As we wait, we are each learning how to live again without him. Whatever we can do to help others, we want to do. The sooner no one else has to suffer from PSP the better!!!
Last edited by KDupree on Sun Oct 06, 2013 7:27 pm, edited 2 times in total.
Husband 40 yrs, Tim, b.1955 diagnosed w/PSP in 3/2010; symptoms slurred speech/vision problems early 2009; misdiagnosis dementia of Alzheimer's type 2009; Homegoing age 58 on 08/18/2013. Pathology report-Mayo, Jacksonville-confirmed CBD not PSP.
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Re: Who are we....

Postby eplowman » Sat Jun 22, 2013 11:00 am

Kathy,

A wonderful, informative post, though I'm sorry the reason for it is sad for you and your family. Thank you for taking the time to write and post it. We look forward to hearing from you further as you struggle with the caregiving challenges presented by PSP -- and deal with the aftermath it left regarding the family business and other matters. How blessed Tim is to have had you in his life all these years, and especially so now. And how blessed you are to have such supportive family members and friends.

It's great you had the correct diagnosis made at the Univ. of Alabama. The neuro dep't at that med school and hospital is one of the best in the country for identifying PSP.

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

Postby zymurgy » Tue Jul 09, 2013 10:18 am

I am adding this in hopes that the data will be useful to someone doing research into PSP. And, perhaps, it can help others who are newly diagnosed. I believe my husband has both the environmental and genetic contributors to his disease.

Name: Christine
RELATIONSHIP TO PSP: Husband
PwPSP: Dave
DATE OF BIRTH: 1939
OCCUPATION: (all left brain) Attorney, CPA, financial manager
DIAGNOSED: March 2013 but has probably had symptoms since 2009
LOCATION: Southern CA
BACKGROUND: Dave grew up in rural Oregon and was exposed to DDT, arsenic, and cigarette smoke. All but one of aunt's and uncles, including mother and grandmother on mother's side of family have had some form of serious dementia, but no one with PSP. I believe that which tipped the scale, as it were, in Dave getting PSP was taking stains for a very short period of time in 2009. (see Dr. Graveline at spacedoc.com) He experienced the serious side effects of muscle pain and weakness that continue to this day. What brought us to a diagnosis were falls, never serious, and a worsening of a slurring of his speech. His penmanship has never been good, but it became where even he could not read it. We were at first attributing these to "just getting older." Due to his family health background, for years we have had a good, healthy diet which included turmeric, CoQ10, vitamin D, flax seeds, and DHAs in fish oil. Dave had been a runner until a knee replacement in 2005, but never stopped exercising. Because we thought he just had balance issues, he began Tai Chi two years ago and physical therapy this year. Dave began taking the generic for Sinemet (Carbidopa/Levadopa) in May. We have ramped up his supplements both in quantity and amount to add those that may help with tauopathies, mitochondrial dysfunction and oxidative stress. As it stands now, his speech is almost back to normal, balance is much better (one a month vs one a week), penmanship not so much. Facial spasms seem somewhat less. Since he wears glasses, we never had noticed that he can't look up, but his eyes track together better. Looking down and side to side do not seem to be an issue. He continues to grapple with coming up with words. He has never had any tremors, and the tapping of his fingers remains the same, slow on his right side, fine on the left. Everything gets worse if he is tired. I would be happy if this were to be the status quo for the next few decades.
Last edited by zymurgy on Sat Aug 03, 2013 9:37 am, edited 3 times in total.
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Re: Who are we....

Postby tdeel » Fri Jul 19, 2013 10:19 pm

Name: Teresa
PwPSP: Shirley - mother
Relationship to PSP: daughter
Date of birth for mom: Sept. 20, 1943
Symptoms: 2005
Diagnosed: June 2011
Location: Southwest Virginia
Mom's background: 2 daughters, 3 grandchildren, 2 great-grandchildren; occupation seamstress for 20 + years, hair dresser, cake decorator, hard worker all her able life; lived 47 years with a smoker; a brother deceased with what I believe to have been PSP, however there was not a clinical diagnoses for disease. His family feels certain that they share the same disease
My background: Born 1963: married 32 years, 2 children, 2 precious grandchildren, MS VA Tech--curriculum and education, reading specialist; middle school teacher

I do hope that someone analyzes the information provided and shares the findings.
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Re: Who are we....

Postby Doris1954 » Wed Aug 07, 2013 8:23 am

NAME: Stacy
RELATIONSHIP TO PSP: Mother with PSP
PwPSP: Doris
DATE OF BIRTH:4/25/54
DIAGNOSED: 7/25/12 symptoms since 2008now stage 4 only symtom she does not have is choking issues yet
LOCATION: Brockton, MA
BACKGROUND: Mother was divorced, 3 children. Worked PT later in life.
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Re: Who are we....

Postby upnover » Mon Nov 18, 2013 3:16 pm

NAME: Keith
RELATIONSHIP TO PSP: Husband of 30 years
PwPSP: Petra 52
DATE OF BIRTH:22/12/1960
DIAGNOSED: 10/25/13 symptoms since 2011
LOCATION: Sherwood Park, AB
BACKGROUND:

She was a housewife for 30 years since our children were born and no exposure to any known chemicals or what ever. She was an active gardener, craft person and generally never had a dull or down time. I was the one who always got sick with colds etc. she hardly was ever sick a day in her life...till now.
First started to notice symptoms of withdrawal, speech and dis-interest in everyday things abut 3 years ago. The falls didn't start till this last spring and now it is almost weekly or daily if I don't pay attention. She has now had 2 episodes of incontinence in that last week and this scares me as the rapid progression of this disease is hideous. Her neck is bent forward and I think it is called anticollis or something like that. Her speaking is very limited. I am in the process of trying to get a foreign live in care giver to help me out. Picked up a walker for her but not sure when to start using this but I'm sure it's coming soon. She has been going to a center 3 days a week for sort of adult day care which frees me up to work from home and keep some semblance of normalcy. Tried a lot of supplements like glutathione, Curcumin, Turmeric, GHG vitamin c, but nothing seems to make a difference. Have a great support network form our church and our faith in Him makes a huge difference in trying to deal with this. She is way too young for this. Some day I guess we will know why.
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Re: Who are we....

Postby aggiesboy » Thu Nov 21, 2013 10:12 pm

NAME: Robert
RELATIONSHIP TO PSP: Son of Mother with PSP
PwPSP: Agnes Judith Age 79
DECEASED:N/A
DIAGNOSED: 12/2007, symptoms since 2002, now late stage 3
LOCATION: King George, Virginia
BACKGROUND: Most awesome and loving mother a child could ever have. Loving wife 38 years to my deceased father of 18 years. Early symptoms were of falling down. Progressed rapidly in 2006, fall with knee injury confined her to wheel chair 2007. Lives with my wife and I in our home we built with her in mind not knowing what was to come . Thankful she was living with us when things went down hill, could not imagine her in a nursing home. She took care of me coming into this world, and I'm devoted to see her out of this world. Finding our nurse Sarah to take care of her during the week days has been a blessing. Current condition, unable to talk clearly, mostly tired, unable to walk, feed herself, dress, shower or brush her teeth, must be catherized to void. very difficult to do as her son but I do what I've got to do, moans a lot and can't see very well, but boy can she still hear!
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Re: Who are we....

Postby jmstokes » Fri Feb 28, 2014 9:50 am

NAME: Melissa
RELATIONSHIP TO PSP: Dad with PSP
PwPSP: Larry
DATE OF BIRTH: 09/18/51
DIAGNOSED: 07/18/13, symptoms apparent since 2011
LOCATION: Dakota County, Minnesota
BACKGROUND: Oldest of 5 children. Father died age 66 of prostate cancer, Mother age 83, currently in memory care for dementia & alzheimers. Has 2 children, (myself and younger brother) and 2 grandchildren (my kids), divorced 20 years ago. Recovering alcoholic, major auto accident at age 18 with some brain trauma, depressive disorder. Factory worker, retired in 2009. Excellent woodworking, auto and home repair skills- now very difficult to use a screwdriver to tighten or loosen something.
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