Cause of death - a survey


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Cause of death - a survey

Postby eplowman » Fri Aug 12, 2005 9:09 pm

NOTE: Broken topic repaired 02/20/2012 -- 87,057 prior views to be added to views in topic heading. - Moderator
-------------------------------------------------

For anyone who cares to participate:

It would be interesting to learn what =official death certificates= stated as cause of death of loved ones represented here.

This survey doesn't apply to most of our forum's current members right now (though some whose loved one has died are still here, and can contribute), but it will apply to us at some future point, provided WE are still around! Hopefully, we can keep the survey going for whatever future good it might achieve.

Let's keep replies to this topic dedicated to the survey results, and post other comments elsewhere. No need to repeat the questions; you can just use their respective numbers.

1. Cause or causes of death as listed on the death certificate? (Do NOT include "PSP" if that's not on the certificate.)

2. At what age did death occur?

3. Date of death?

4. What year diagnosed with PSP (or date of first "misdiagnosis")?

5. Male or female?

6. Place of death (home,hospital,nursing facility,hospice, other)?

7. Primary caregiver (self, family member, non-family member)?

8. Your relationship to the deceased (spouse, daughter, son, relative, friend)?

Optional item added 07/2007:

9. If the brain was donated for research, pls indicate whether the subsequent pathology report found PSP and/or some other disease/disorder (pls name it). These findings will be of interest to the doctors reading this survey. (A small percentage of suspected PSP cases are found at autopsy to be something different, though symptomatically similar.)

A previous response can be edited to include any update. (a) Just click on the Edit button above your reply. This will bring up your original reply. (b)Make any addition or other change. (c)Then click on the Submit button at the bottom of the screen. (d)WAIT until a confirmation pops up informing you that your change was posted.

ed p.
Last edited by eplowman on Wed Aug 22, 2007 8:04 am, edited 2 times in total.
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Postby josephblanc » Sat Aug 13, 2005 5:12 am

1. PSP

2. 71

3. 8/10/2002

4. 1997

5. F

6. Nursing Home

7. Family Member

8. Spouse

Good luck,
Joe Blanc
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Postby josephblanc » Sat Aug 13, 2005 7:09 am

Dear Ed:

Incidentally, I don't think that our doctor made a mistake when she wrote "PSP" as the cause of death for my wife. My wife at that point was incapable of swallowing either solids or liquids (she would regurgitate anything that she managed to get down), was under hospice care, and by long-standing agreement between her and our children as well as me had made it very clear that she wanted no form of articial feeding. If that is not death caused by PSP, what is it?

Joe Blanc
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Postby daddysgirl » Sun Aug 14, 2005 7:05 am

1) Listed on the death certificate (a)pneumonia (b)dysphagia (c)PSP

2) 71

3) December 29, 2004

4) 2002

5) Male

6) Hospital

7) Nurses at nursing home & hospital

8) Daughter
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Postby aboc1960 » Mon Aug 15, 2005 11:07 am

1) PSP
2) age 70
3) November 22, 2004
4) mis-diagnosed with numerous things beginning 1997. Diagnosed with PSP early 2004.
5) male
6) home
7) family members
8) daughter

I agree with those who posted that they feel their loved DID die of PSP - my fathers body just shut down. He didn't really suffer from anything else at the end other than what PSP did to him.

Alice
daughter of Hal Brown 1934 - 2004
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Postby Nancy Spiekhout » Mon Aug 15, 2005 11:17 am

1) Heart Failure, PSP
2)71
3)11/13/04
4)2001
5)Female
6)Home
7)Husband
8)Daughter
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Postby daddysgirl » Mon Aug 15, 2005 3:37 pm

WOW ... look at the ages at time of death.
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Postby NancyL » Tue Aug 16, 2005 3:04 pm

1. PSP
2. 71
3. 6/21/2004
4. 1/2002
5. Female
6. Home
7. Her children
8. Daughter
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Postby Squirrel » Thu Aug 18, 2005 11:44 am

1. pneumonia (although she had recovered fully from the infection. Due to the PSP, her lungs could no longer handle the burden.)
2. 74 years of age
3. April 5, 05, 5:30pm
4. 2000-Dimentia, 2001-Alzheimer's, 2002-PSP. Although for many years prior, Mom had fits of choking. We used to tease her and say "Swallow it Mom, don't breath it!" I wonder now just how long she had this disease.
5. Female
6. Hospital
7. Family member-me
8. Daughter
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Postby Patriciawray » Sun Aug 21, 2005 8:35 pm

1. a. Progressive Supranuclear Palsy, b. Type 2 Diabetes
c. Hypertension
2. 63
3. July 12, 2005
4. January 2002 (PSP was mentioned in Fall of 2001)
5. M
6. Home
7. Self
8. Spouse
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Postby snoopy47 » Mon Aug 22, 2005 9:29 pm

Donated Brain for Research:
1. PROGRESSIVE SUPRANUCLEAR PALSY, ATYPICAL, WITH CORTICOSPINAL TRACT DENGENERATION AND MILD MOTOR NEURON DISEASE
2. AMYLOID ANGIOPATHY, MILD

1. Progressive supranuclear palsy
2. 59
3. July 31st, 2005
4. 2001
5. Male
6. AFC-last two years and hospice for two months.
7. Family and caretakers at the AFC-(Haven of Rest private owned)
8. wife
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Postby santafe » Wed Aug 24, 2005 9:20 pm

1. Cardiopulmonary arrest, chronic pneumonia, plural effusion-due
to or as a consequence of Progressive Supranuclear Palsy.

2. 54

3. 2/11/2005

4. 2/3/2004 PSP - Misdiagnosed approx 2000-2001(myastemia gravis)

5. Male

6. Home

7. Self

8. Spouse
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Postby Beth » Thu Sep 08, 2005 12:27 pm

1. PSP

2. 93 1/2

3. 11/8/04

4. Jan. '99 (correct diagnosis with no misdiagnoses)

5. F

6. Home with hospice care

7. Self

8. Daughter
Last edited by Beth on Tue May 08, 2012 12:53 pm, edited 1 time in total.
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Postby eplowman » Thu Sep 08, 2005 4:50 pm

Beth and others:

Please include only the cause of death as it was listed on the death certificate. If more than one cause is =listed=, include all. If "PSP" is =not= on the certificate, don't include it.

If you need to =Edit= your post (the pencil icon on the right-hand top of your post) to reflect any addition or correction, please do so when you get time. This will help us keep accurate track of things. Many thanks.

ed p.
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Postby wlusham » Fri Sep 09, 2005 6:18 am

I cannot believe alot of these people were only diagnosed only a few years before their passing, did anyone see syptoms before this that they can remember?
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Postby josephblanc » Fri Sep 09, 2005 7:42 am

Dear Wendy:

It seems to be a sad fact that the median time between the PSP diagnosis and death is around 4 years, and the collection of the present data seems to confirm that.

In the case of my looking back, I can now see that my late wife had great trouble negotiating climbing DOWN stairs. But neither we nor our eye-doctor had the slightest idea that this might be due to a neurological condition.

Be brave,
Joe Blanc
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Postby mary » Fri Sep 09, 2005 8:44 pm

1. Pulmonary & hepatic metastatic disease; Primary cancer unknown. Progressive Supranuclear Palsy.

2. 80

3. August 12, 2005

4. November 1999 (July 1997)

5. Male

6. Home

7. Family member

8. Spouse
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Postby Maggita » Thu Sep 15, 2005 3:29 pm

Hi Ed,

Rather than wait for results from the Florida Brain bank, I'm going to post now. Somthing about Oregon and Death Certificates --My mother had a massive heat attack prior to her death, however because she had a organ tissue harvest and no autopsy, her death (at this time) is listed as "died of natural causes" When the results of her tissue biopsy are sent to me, I then petition the State Medical Examiner to change the Death Certificate, should I be so inclined. I'm inclined -- and will ammend here. This is what I was told by the funeral director. I've been too exhausted to research otherwise.


1.Cause of Death: Natural Causes: Heart Failure/PSP

2. Age: 81

3 DOD: August 9 2005

4. Year diagnosed: 1995 (initially tia stokes/dementia =definitly not! a wit to the end)

5. Gender: Female

6. Place: Skilled care facility

7. Primary in home Caregivers for seven years: Kate, Lori, Suzanne and Norma

8.Relationship: Daugther, alone for 6.5 years, and paid professionals to assist twenty four seven, for 1.5 years, before moving Mom into a nursing home.

My brother, sister-and-law and niece, who is now 21, did'nt contribute physical/emotional/or spiritual support. Finanically they contributed some. They live one hour north.

We don't always get what we would like. And so, we move on.

[V
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Postby nokesl » Thu Oct 13, 2005 8:54 am

With sadness I enter mother Mary's details.

1 - Progressive Supranuclear Palsy

2 - 68

3 - 20th September 2005

4 - 20th August 2003 12.15 pm (it is branded in my memory)

5 - Female

6 - Nursing home

7 - Daughter and family friend

8 - Daughter

Georgie
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Postby carolesgirl » Mon Oct 31, 2005 11:28 pm

1. Deep vien thrombosis / PSP
2. 69
3. 09/27/05
4. 2002-mis 2004-PSP
5. Female
6. Home
7. Non-family 24/7 caregiver and family
8. Daughter
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Postby nokesl » Tue Nov 01, 2005 3:36 am

Cynthia, thank you so much for including your moms information, it is important to get as much information as possible.

Please let me offer my condolences to you on the loss of your mom, I lost my mother only a week before on the the 20th, she was 68.

I hope you feel you can stick around you may have some useful advise to help others here.

Georgie
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Postby Rhonda » Wed Nov 02, 2005 4:48 pm

1. Pneumonia/PSP
2. 69
3. Nov. 9, 2004
4. July, 2001 (symptoms and multiple misdiagnosis for 5 yrs prior)
5. Male
6. Nursing Home
7. Spouse / Nursing Staff at the home
8. daughter

gone almost 1 year now, miss you bunches Dad!
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Postby granny314 » Wed Nov 02, 2005 5:13 pm

1. Progressive Supranuclear Palsy

2.59

3.Oct.9,2005

4.2002(1999 misdiagnosis)

5.Male

6.Home

7.Self

8.Spouse
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Postby rbarber10 » Tue Nov 15, 2005 3:49 pm

1 PSP

2 64

3 11/3/05

4 2000

5 Female

6 Nursing Home

7 Family Member

8 Husband [
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Postby serendipity25 » Wed Nov 16, 2005 11:09 am

1. Progressive Supranuclear Palsy

2. 80

3. 15 November 2005

4. Misdiagnosed (arthritis in the neck) - Nov 2003, Diagnosed PSP - Sep 2004

5. Female

6. Nursing Home

7. Nursing Home Carers

8. Granddaughter
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Postby mhg » Thu Nov 17, 2005 8:24 am

Cause of Death: Cardio/Pulminary Arrest & PSP
Hi Everyone: I can't believe I'm actually posting under this topic. It's still so fresh for me, but it's so very important. Marsha
Date of Death: November 7, 2005

Age at Death: 75, just 4 days before her 76th birthday.

Year Diagnosed: March, 2004, but misdiagosed with Parkinson's, dementia for a year or two before 2004.

Male/Female: Female

Place of Death: Her Home

Primary Caregiver: Her daughter, and some loving caregivers.

Relationship: Daughter
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Postby Elise » Wed Nov 30, 2005 5:04 pm

This is very fresh but I'm pleased to log mothers details
1. a) bronchopnemonia b) PSP

2. 28th nov 2005

3. 86 yrs

3. 2001 PSP 1999 misdiagnosed parkinsons

4. female

5. at home

6. daughter

7. daughter
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Postby drbrown » Fri Dec 09, 2005 9:33 am

1. > Cause or causes of death as listed on the death certificate?

Acute respiratory distress, progressive supranuclear palsy

2. > At what age did death occur?

73, about 4 years after first potential signs of PSP

3. > Date of death?

12/01/05

4. > What year diagnosed with PSP (or date of first "misdiagnosis")?

2003 ("Parkinsonism" by general neurologist), August 2004 (PSP by Mayo Jacksonville)

5. > Male or female?

Female

6. > Place of death (home,hospital,nursing facility,hospice, other)?

Nursing home, 6 months after admission

7. > Primary caregiver (self, family member, non-family member)?

Husband

8. > Your relationship to the deceased (spouse, daughter, son, relative, friend)?

Child
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Postby danielle » Fri Jan 06, 2006 11:03 pm

1.> Acute Respiratory Distress Syndrome, Parkinsonism

2. > 60

3. > 8/26/2004

4. > never diagnosed with PSP. First misdiagnosis, 8/2002

5. > female

6. > hospital

7. > family

8. > daughter
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Postby jenny » Sat Jan 07, 2006 6:21 pm

1. complications from PSP
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Postby jenny » Sat Jan 07, 2006 6:24 pm

1. A. complications from PSP
B. natural causes

2. 75 years old

3. 12/30/2005

4. diagnosed 9/2005

5. male

6. home

7. primary caregivers: wife, daughter and son

8. daughter
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Postby katygirl » Mon Jan 09, 2006 9:46 am

It's still unreal to being doing this...

1. Cardio-pulmonary failure as a result of aspiration pneumonia as a result of PSP.

2. 66 years

3. 12/12/05

4. Dad was diagnosed w/PSP in the spring of 2002, after an initial diagnosis of Parkinson's in 1997. He exhibited symptoms as far back as 1995.

5. Male

6. Dad passed in the hospital. He spent his final 10 days in the hospital, and we were awaiting transfer to hospice / nursing facility. Prior to his admission he was home.

7. Dad's primary caregiver was his wife of 20 + years. The last couple of years we had additional hired care staff in the home.

8. Daughter
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Postby nanasgirl » Thu Jan 19, 2006 4:17 pm

1. > Cause or causes of death as listed on the death certificate? (Do NOT include "PSP" if that's not on the certificate.) PSP

2. > At what age did death occur? 79 1/2

3. > Date of death? 1/2/06

4. > What year diagnosed with PSP (or date of first "misdiagnosis")? diagnosed 2003...misdiagnosed with Parkinsons 1997

5. > Male or female? female

6. > Place of death (home,hospital,nursing facility,hospice, other)? home

7. > Primary caregiver (self, family member, non-family member)? daughter/grandaughter (all lived in grandaughters home)

8. > Your relationship to the deceased (spouse, daughter, son, relative, friend)? grandaughter
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Postby Lindazharley » Wed Jan 25, 2006 2:55 pm

(1) pneumonia

(2)76

(3)7/8/04

(4) 1998

(5)F

(6)home/hopice made house calls

(7)family members

(8)daughter
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Postby Margaret » Wed Jan 25, 2006 9:05 pm

My husband passedaway on 10-13-05 of psp it was stated psp on his death certificate. He was diganoised in 2001 had since 2000. I was his caregiver.He was on hospice for 10 months. last 6months went dounwards fast. He had phuemonia the last day.Such a rotten desease!!! Margaret from OHio He was 64.
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Postby bert » Sun Feb 05, 2006 2:26 am

Myastinia Gravis is caused by a traumatic experience, in most cases when young.
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Postby dwray » Fri Mar 10, 2006 11:29 am

1. Progressive Supranuclear Palsy
2. 69
3. Feb. 4th. 2006
4. 2002 -- symptoms for 6 - 7 years
5. Male
6. Home -- With help of hospice nurse and aid
7. Self
8. Spouce -Loving wife of Norm
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Postby prodman93 » Sat Mar 11, 2006 3:40 pm

Here are my answers. Also, Ron had his brain donated to Johns Hopkins in hopes of helping to find a cure.

1. PSP
2. 72
3. 7-6-2005
4. dxd. with PD 7-2002, dxd. with PSP 3-2004
5. M
6. Hospice
7. Self
8. Wife
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Postby jeveret120 » Sun Mar 12, 2006 5:30 pm

1. > Cause or causes of death as listed on the death certificate? (Do NOT include "PSP" if that's not on the certificate.)
1. - Respiratory Failure, 2. - PSP

2. > At what age did death occur?
64 yo; 1.5 mos. short of 65.

3. > Date of death?
03/04/06

4. > What year diagnosed with PSP (or date of first "misdiagnosis")?
Misdiagnosed w/ Alzheimers 2/03; Dx w/ PSP 7/04

5. > Male or female?
Female

6. > Place of death (home,hospital,nursing facility,hospice, other)?
Hospital (6 day stay following 2.5 mos. in assisted living)

7. > Primary caregiver (self, family member, non-family member)?
Self

8. > Your relationship to the deceased (spouse, daughter, son, relative, friend)?
Youngest Son
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Postby Eve » Mon Apr 10, 2006 10:33 pm

1. PRESUMING PSP on DC-
2. 55
3. January 30, 2006
4. January 5, 2006 (signs of illness 2001)dc said YRS.
5. male
6. Hospice Care Center
7. self
8. spouse

Autospy report completed June 12, 2006: Results showed PSP.
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Postby Phylis » Wed Apr 12, 2006 4:27 pm

1. psp
2. 74
4. 3/21/06
5. Female
6. Home
7. Husband
8. Niece
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Postby Ron C » Wed Apr 12, 2006 5:18 pm

1. > Cause or causes of death as listed on the death certificate?

Progressive Supranuclear Palsy

2. > At what age did death occur?

67

3. > Date of death?

February 14, 2006, our 47th wedding anniversary

4. > What year diagnosed with PSP (or date of first "misdiagnosis")?

PSP diagnosed June 2000

5. > Male or female?

Female

6. > Place of death (home,hospital,nursing facility,hospice, other)?

At home

7. > Primary caregiver (self, family member, non-family member)?

Self

8. > Your relationship to the deceased (spouse, daughter, son, relative, friend)?

Husband


Ron c
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Postby Bryan » Sun Apr 16, 2006 7:41 pm

My name is Bryan Czarapata. My father just died 4-12-06 of suspected P.C.P.. We have not gotten back the autopsy yet.

2. 73 yrs.

3. 4-12-06
4. 2004
5. male
6.at home
7.my sister & myself
8. son
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Postby Ziabull » Fri May 05, 2006 11:05 pm

1. I think my step mom put natural causes - but these natural causes were a result of PSP.

2. 66 yrs

3. July 24, 2005 between 6am and 8am

4. 1996 (we noticed symptoms in 1995)

5. Male

6. Home

7. Step-mom, step-brother with a lot of helping from nurses.

8. Daughter
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Postby Pauline in Maine » Tue May 30, 2006 11:56 pm

1. PSP on Death Certificate (had complete muscle failure)
2. 64
3. April 1, 2006
4. July 2001 (symptoms from late 1998)
5. Male
6. Home (Hospice care last 12 days)
7. Wife primary caregiver
8. Wife
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Postby magicpotion309 » Thu Jun 08, 2006 2:07 pm

1. bronchopneumonia//probable lung malignancy//Progressive Supranuclear Palsy

2. 75

3. 2nd june 2006

4. january 2004

5. female

6. hospital

7. self

8. son
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Postby hollypots » Sun Jun 11, 2006 10:31 am

Hi,
This is my first time to this forum. My father passed away on May 12th, and I'm hoping that knowing that other people are going through the same thing that my family has for so long will help me to feel less isolated.

1. PSP
2. 73
3. 5/12/06
4. 1996 (Misdiagnosed w/ Parkinsons)
5. Male
6. Assisted living facility
7. Non family/family 50/50
8. Daughter
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Postby krutland » Thu Jun 15, 2006 4:49 pm

This is my first time on the forum. My Mother died in December 2005.
I have just now been able to come to terms with the long goodbye that
took place in my life.

1. pneumonia
2. 66
3. 12/25/05
4. 2003- not sure (symtoms as early as 1998)
5. female
6. home - had been in hospice house for 6 months.
7. father/sister in law - hospice/sister in law/father (in that order)
8. daughter
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Postby jz » Sun Jun 25, 2006 8:55 pm

1. Progressive Supranuclear Palsy (PSP)
2. 77
3. June 19th, 2006
4. Dec 2000-Misdiagnosed w/mild dementia, Dec 2001-diagnosed w/Alzheimers, Dec 2002-diagnosed w/Parkinson's, Dec 2003-diagnosed w/PSP. Our Christmas' were very tearful from 2000 thru 2003 with each new diagnosis.
5. Female
6. Home
7. Non-family caregiver (had Hospice last 4 months)
8. Daughter

Thank you.
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Postby PJ » Mon Jun 26, 2006 9:57 pm

1. > Cause or causes of death as listed on the death certificate? <b>PSP was on the certificate</b>

2. > At what age did death occur? <b>69</b>

3. > Date of death? <b>April 20, 2005</b>

4. > What year diagnosed with PSP (or date of first "misdiagnosis")? <b>PSP diagnosis June 2004</b>

5. > Male or female? <b>Male</b>

6. > Place of death (home,hospital,nursing facility,hospice, other)? <b>Home</b>

7. > Primary caregiver (self, family member, non-family member)? <b>family member</b>

8. > Your relationship to the deceased (spouse, daughter, son, relative, friend)? <b>daughter</b>
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Postby stitcher_49238 » Wed Jul 05, 2006 11:20 pm

1. PSP + third degree burns with skin grafts
2. 66
3. 6-17-2006
4. 1999
5. male
6. Hospice of North west Ohio (10 days)
7. self
8. spouse
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Postby lindah » Sat Jul 29, 2006 4:41 pm

1. A. Pneumonia, B. Reoccurance Breast cancer, C. PSP

2. 66 years old

3. July 15, 2006

4. My mother first noticed her right hand would not play the piano in the direction she was intending, in 1995. The primary physician told her she just needed to practice more. PSP diagnosis was in the Fall of 2000.

5. Female

6. hospital room

7. my dad and my sister

8. daughter
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Postby sherka » Tue Aug 08, 2006 4:12 pm

1. Natural causes/PSP
2. 77
3. April 19, 2006
4. 1999 or 2000
5. Female
6. Hospice (home)
7. Self, family member
8. daughter
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Postby Gmm » Sat Aug 12, 2006 8:24 pm

PSP/Pneumonia
70yrs
18th July 2002
October 1995 (assumed PSP)CONFIRMED BY BRAIN AUTOPSY
Male
Home
Duaghter
Daughter
** I was insistent my GP write cause of death 1)PSP 2)Pneumonia
in the belief that the only way PSP would be researched sufficently was by giving psp a higher profile.When there are continued deaths by a certain disease is when they tend to investigate more.My feeling is my father only passed from pnuemonia due to his having psp in the first place..he prior to psp dx was never ill in his life.
Gmm
 
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Postby meltaylor » Sun Aug 13, 2006 5:27 am

1. PSP
2. Age 73 was going to be 74 December 12, 2004
3. October, 04
4. Dx. 2001 and was told the disease had been with him for approx. 3 years already.
5. male
6. Passed away at home with my stepmom, 2 sisters, my brother and myself by his bedside, and a nephew whom was excused from Iraq serving in the military to be with us in my dads final hours.
7. His wife/my stepmom, myself, and a caregiver during the day hired by my stepmom. Some help from my 1/2 brother and sister.
8. I am his second to the oldest daughter of 5 children.
meltaylor
 
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Postby lpiffard » Fri Sep 01, 2006 11:36 pm

1 Cause or causes of death as listed on the death certificate? Progressive Supranuclear Palsy

2 At what age did death occur? 72

3 Date of death? August 7, 2006

4 What year diagnosed with PSP (or date of first "misdiagnosis")? 1990

5 Male or female?Female

6 Place of death (home,hospital,nursing facility,hospice, other)? Nursing Facility

7 Primary caregiver (self, family member, non-family memb
Staff at Skilled Nursing Facility

8 Posted by Leah, her daughter
lpiffard
 
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Postby debrakenny » Mon Sep 04, 2006 5:50 pm

1. Natural - Dementia (which I do NOT agree with)
2. 83
3. 8/26/06
4. 2000
5. Male
6. Home
7. Family Member
8. Daughter
debrakenny
 
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Postby Julie » Mon Sep 11, 2006 1:02 pm

1 A Pneumonia B. PSP
2. 72
3. 26 August 2006
4. 2002
5. male
6. hospital
7. wife
8. daughter
Julie
 
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Postby ronw » Fri Sep 15, 2006 8:31 pm

1. > PSP
2. > 79
3. > 14 October 2004
4. > 2000
5. > Female
6. > Nursing Home
7. > Self
8. > Son

Started having unexplained falls in 1997. Lost independency summer of 2000 and was relocated to a nursing home for the remainder of her life.
ronw
 
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Postby pgauthor » Sat Sep 16, 2006 4:44 pm

1. psp
2. 78
3. 9/14/2000
4. 1993
5. Female
6. Nursing home with Hospice care
7. Family member with nursing home care
8. Daughter
pgauthor
 
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Postby Bonkers » Mon Oct 02, 2006 5:19 pm

1.Cause of death? a)Aspirated pnuemonia b)Progressive Supranuclear Palsy
2. Age at death? 78 and 1/2

3. Date of death? 9/14/2006

4. When diagnosed? diagnosed in 2001 but had symptoms way before that

5. male

6. nursing home but was adament about wanting to die at home

7. myself and Mom and in the last few months hospice & nursing home

8. daughter (2nd child of 3)
Bonkers
 
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Postby Bonkers » Mon Oct 02, 2006 5:23 pm

Ed,
Can you give us a running tally every so often of an average of the answers of some kind? I am curious...
Bonkers
 
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Postby marie » Tue Oct 03, 2006 5:20 pm

1. A - pneumonia
B - PSP

2. 62

3. 21 of July 2006

4. Feb. -04, symptoms since -01

5. male

6. nursing home. ( last 9 months)

7. wife

8. wife
marie
 
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Postby Kathleen » Sat Oct 07, 2006 10:28 pm

1. PSP
2. Mom was 74
3. Mom passed away on 8/21/06
4. 2005 - her symptoms started in 1992.
5. Female
6. Home - We had hospice and she passed away at home. We were all there.
7. Caregiver - Dad, hospice and caregiver
8. Daughter
Kathleen
 
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Postby vikjo76 » Sat Oct 14, 2006 9:20 am

1.) PSP (after discussion with the coroner)
2.) 61
3.) 10/04/06
4.) 2000 (Initially diagnosed with depression)
5.) Male
6.) Home
7.) Wife
8.) Daughter
vikjo76
 
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Postby Charlene Terrell » Fri Oct 27, 2006 2:31 pm

Irby David (Dave) Terrell
DOB October 14, 2006
Cause of Death: Progressive Supranuclear Palsy
Age: 72
Had PSP for 8 years, possible symptoms 10 years earlier.
Diagnosed in January 2005.
Charlene Terrell
 
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Postby angiehuntley » Sat Oct 28, 2006 11:01 am

1. Corticobasal Degeneration (PSP was the misdiagnosis)

2. Age at death: 65
3. Date of death: September 27, 2006

4. Diagnosis of PSP: 2001

5. > Male

6. > Place of death : HOme....My mother and father shared a residence with my family

7. > Primary caregiver:My mother(primary), Myself (secondary)

8. > Your relationship to the deceased: daughter
angiehuntley
 
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Postby danabear » Sun Nov 05, 2006 3:03 am

Thank you for compiling the information.

1. PSP
2. 68

3. 10/22/06

4. Ten years ago, Dad had a fall that was thought to be mini strokes. He never seemed to get better. He was then thought to have Parkinson's. About 6-5 years ago diagonsed with PSP.

5. Male

6. Nursing facility

7. Mom was the primary caregiver at first until PSP progressed to the point where my dad started to loose the ability to walk and speak, the last 5 years: the wonderful staff of St. Mary's Villa (Moscow, PA)
8. duaghter
danabear
 
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Postby pennim » Wed Nov 15, 2006 12:44 am

1. Progressive Supranuclear Palsy
2. 64, to the day
3. 11/7/06
4. 2004
5. Male
6. Adult Foster Home
7. Myself
8. Daughter
pennim
 
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Postby Puckstop » Mon Nov 20, 2006 5:13 pm

1. PSP

2. 60 yr. 11 months 363 days

3. November 12, 2006

4. Dec. 2005

5. Female

6. Hospice

7. myself with the assistance of a live-in nurse for the
18 months prior to the hospice.

8. spouse
Puckstop
 
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Postby Louberry » Tue Dec 19, 2006 9:47 pm

1. PSP was listed on the death certificate

2. 67 was his age

3. November 16, 2006

4. in 2000 they thought it was Parkinson's Disease and then in 2001 they switched the diagnose to PSP

5. Male

6. He passed away at home, with my Mom, my brother and I at his side

7. my Mom was his primary caregiver, with the help of Hospice nurses coming in to check on him from time to time

8. this is my Dad that I am talking about.

and P.S. again, what a wonderful site this has been for my Mom and I..we have learned so much during my Dad's battle. we hope in the future we can help someone else
Louberry
 
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Postby Dr. See » Tue Jan 02, 2007 11:53 pm

I have contributed rarely but now want to post Chris' final entry into this survey.
1. Progressive Supranuclear Palsy
2. 63.5
3. 12/07/06
4. 1/01 after about one year of searching for a diagnosis
5. Female
6. Home after a trip to Disney with daughter and grandson
7. Husband with a health care worker 21 hrs per week
8. Spouse
Dr. See
 
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Postby ccsabathia » Tue Jan 30, 2007 6:39 pm

Progressive Supranuclear Palsy
81
Jan. 3, 2007
misdiagnosed in 2004, diagnosed in July of 2006
female
she died in hospice
my father, in Texas, (81) was her caregiver at home until hospice 3 weeks before her death
I am her daughter in Ohio
ccsabathia
 
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Postby spark25 » Fri Feb 02, 2007 1:19 am

1. Cause or causes of death as listed on the death certificate?
-1. Cerebral vascular accident (PCP released the death certificate and didn't know the diagnosis. Last neurologist we saw suspected PSP.)
-2. Respiratory failure
`
2. At what age did death occur?
-64 years old

3. Date of death?
-August 17th, 2006 (2 days before my birthday)

4. What year diagnosed with PSP (or date of first "misdiagnosis")?
-2002 (PCP and other neurologists initially suspected stroke. MRIs and CT scans all came out clear. Suspected PSP in 2003.)

5. Male or female?
-female

6. Place of death (home,hospital,nursing facility,hospice, other)?
-home

7. Primary caregiver (self, family member, non-family member)?
-husband

8. Your relationship to the deceased (spouse, daughter, son, relative, friend)?
-daughter
spark25
 
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Postby Jrusty » Wed Feb 21, 2007 9:58 pm

1. Progressive Supranuclear Palsy
2. 72
3. 2/1/2007
4. dx 2001 atypical parkinsons; dx 2004 PSP
5. Male
6. Home
7. wife
8. wife
Jrusty
 
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Postby Shylady » Tue Mar 06, 2007 11:12 am

1. a)respiratory arrest b)PSP c)congenital
2.53
3.Feb.26,2007
4.PSP diagnosed 2006
5.Female
6.Home
7.Myself,my dad,hospice since 10/06
8.Youngest daughter
Shylady
 
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Postby jerry67jr » Wed Mar 07, 2007 10:44 am

1. PSP
2. 74
3. April 27, 2006
4. 1991-92
5. Female
6. Home
7. Family
8. Son
jerry67jr
 
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Joined: Sat Jan 28, 2006 10:18 pm

Postby blane » Wed Mar 07, 2007 12:43 pm

1. Cause(s) of death listed on death certificate as "Progressive Supra-Nuclear Palsy", "Cerebro Vascular Disease", and "Dementia-Vascular Type";

2. Age at death, 82, would have been 83 in May, 2007;

3. Date of death, February 20, 2007;

4. The year of diagnosis was December, 2003; Mom was misdiagnosed several times prior to this date; first began exhibiting symptoms at least 10 years before this time, with the falling, mood swings, headaches, etc.

5. Female

6. Place of death was actually Hospice in South Florida; Mom had been in a nursing home in that area for almost 3 years, was taken to a Hospice House late on Thursday, February 15 in an effort to control some of her pain (was placed on a morphine pump)(as a point of possible interest, I don't know how much of her pain was actually caused by the PSP as opposed to the level of care received at the nursing home, but that is another story in and of itself). Mom passed into God's loving arms on Tuesday, February 20, 2007, finally free of this horrible disease;

7. Mom's primary caregiver at the time of her death was Hospice for basically 5 days and a nursing home for 3 years prior to that; before December, 2003, she lived mainly with me (one of her daughters), for close to 20 years;

8. Relationship, daughter, one of 8 children.
blane
 
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Postby mythsrs » Wed Mar 21, 2007 4:24 pm

1. PSP related

2. 74

3. Feb. 18, 2007

4. Dec. 2001

5. Female

6. El Paso, TX in a private residential care home

7. myself, my father, then caregivers at the home

8. I am her daughter
mythsrs
 
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Location: USA

Postby Sunflower » Thu Mar 29, 2007 2:49 pm

1. a)Pneumonia b)Progressive Supranuclear Plasy
2. 79 years old
3. March 23, 2007
4. October, 2004
5. Female
6. Hospital
7. Daughter
8. Daughter

(Mother - Thresa B Flowers)
Sunflower
 
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Postby Sandi » Sat Apr 21, 2007 8:42 pm

1. terminal pneumonia
2. 78
3. March 26, 2007
4. initially diagnosed as stroke 2004, then diagnosed with PSP and corticobasal degeneration 2005
3. male
4. was at home until 9 months ago; died in nursing home
5. spouse, family
6. daughter
Sandi
 
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Postby 4bertyhon » Sun May 20, 2007 6:49 pm

My heart aches as I do this.

1. Progressive Supranuclear Palsy
2. 63
3. 05/06/07
4. 06/2005 PSP, 2002 "non Alzheimers dementia", symptoms earlier
5. Male
6. Home (was under Hospice care)
7. I am honored to have been his primary caregiver
8. Wife

Susie
4bertyhon
 
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Postby evarouzee » Sat Jun 02, 2007 9:55 am

Am so thankful that I was able to care for Bob til he went home.

1. a) CardioRespiratory Arrest, b) Sepsis Syndrome, c) PSP
2. 73
3. 05/17/07
4. 1998
5. Male
6. Home (Hospice)
7. Self
8. Wife
evarouzee
 
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Postby moosedog » Mon Jul 02, 2007 1:56 pm

1. Respiratory/cardiac arrest
Acute Respiratory failure
Progressive Supranuclear Palsy

2. 66

3. 4/12/07

4. 3/05 symptoms from '01

5. Male

6. nursing home

7. self

8. partner
moosedog
 
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Postby mydadhaspsp » Wed Jul 04, 2007 1:45 am

1. PSP

2. 74

3. 5/23/07

4. Mis-diagnosed with Lyme Disease in 2001 (properly diagnosed with PSP in 2003)

5. Male

6. Home (kept at home and out of hospital or nursing home the entire time)

7. Mom and I

8. Son
mydadhaspsp
 
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Postby suzy » Fri Jul 13, 2007 8:55 pm

1. PSP

2. 73

3. July 8, 2007

4. 2004

5. Male

6. Nursing Home

7. Wife

8. Wife

Diana/suzy
Last edited by suzy on Sat Nov 15, 2008 10:49 pm, edited 1 time in total.
suzy
 
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Postby lw1159 » Sun Jul 15, 2007 7:28 pm

1. PSP
2. 79
3. July 5, 2007
4. Diagnosed in 2001
5. Female
6. Home with Hospice
7. Dad and non-family member
8. Daughter
lw1159
 
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Postby mydadhaspsp » Tue Jul 17, 2007 5:15 pm

Doug,

You're absolutely right, and no offense is taken. My Dad's actual cause of death was PSP.


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

The two main forms of death cause by this disease is not the disease itself witch does not kill you. what i think eplowman was trying to get at and not offense to those who have posted already. They r pneumonia and aspiration. Please correct me if i am wrong

Thanks Doug
<hr height="1" noshade id="quote"></font id="quote"></blockquote id="quote">
mydadhaspsp
 
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Postby ruthkri » Fri Jul 20, 2007 10:20 am

Dear ED, I was checking your survey list and noticed that I did not post Bud's name and info. Here it is:

Quentin "Bud" Krieger

1- PSP
2- 82
3- March4, 2007
4- Was diagnosed in June 2002 when Dr. son dis not like the way his eyes looked . Suspect possible prior year of imbalance and always
explainable falls. Immediate diagnosis and follow-up by neurologist.
5- male
6- was always at home- and left us in his own bed
7- cared for entirely by spouse and the same full time PCA's for
two years. Hospice and Hospital Home Health Care therapists at home.
8- Information contributed by spouse

We were fortunate to have home visits by doctor son and PCP and others regularly.
ruthkri
 
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Location: Minneapolis, Minnesota

Postby j-pandora » Tue Jul 31, 2007 2:42 pm

1. > Cause or causes of death - Progressive Supranuclear Palsy

2. > At what age did death occur?- 57

3. > Date of death? - July 26th, 2007

4. > What year diagnosed with PSP? - November, 2003

5. > Male or female? - Male

6. > Place of death? - at home in his bed, not a hospital bed.

7. > Primary caregiver? - My Mom and I

8. > Your relationship to the deceased? - Daughter
j-pandora
 
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Postby gatorchin3 » Wed Aug 22, 2007 12:36 am

Thanks to those of you who have posted here. I know it is painful.
Jackie
Last edited by gatorchin3 on Tue Sep 18, 2007 12:10 am, edited 3 times in total.
Jackie is daughter of Jeanie, 84, dx w/PSP 8/06 symptoms since 1999
gatorchin3
 
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Location: USA

Postby immacula » Wed Aug 22, 2007 10:54 pm

John Saverin DeRoches

1. PSP

2. 65

3. June 16, 2007

4. May 2005

5. At home with all the family surrounding him.

6. Wife and daughter

7. Wife :(
Donna...wife of John...b.June 3, 1942, died June 16, 2007
St.Jude, Saint of the Impossible
immacula
 
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Cause of death - a survey

Postby jturosky » Mon Sep 17, 2007 10:56 am

1. I don't know. The only person that may have seen it is my Mother. When he was finally admitted to the hospital (by Mom's insistance) they said he had deep vein thrombosis and was severly dehydrated. He died when his kidneys failed (resulting from dehydration) 4 days after being admitted to the hospital.

2. 74

3. November 26, 2005

4. Approximately 2001

5. Male

6. Hospital

7. Mom until she developed breast cancer and was unable to give him the care he needed. Once the disease progressed further, in the best of health, I don't think she would have been able to provide the care he required. Nursing home (nightmare) for final 2 months.

8. Proud daughter

9. At the time, it was something that we didn't want to discuss with our Mother. She had been through enough emotionally that we didn't have the heart to mention it to her at the time. They were married for 50+ years and he was her soulmate.
jturosky
 
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Postby CalamityJane » Tue Sep 25, 2007 3:21 pm

1. Degeneration of basil ganglia nuecleus (this is what was actually listed on the death cert)
2. 70 years young
3. date of death june 28th 2007 10:30am
4. fully diagnosed april 2007
wrongfully diagnosed 2004 with parkinsons
we figured he had it since 1997, he started to show signs at that time
5. Male
6. nursing/hospice facility
7. wife
8. daughter
Last edited by CalamityJane on Thu May 08, 2008 4:45 pm, edited 1 time in total.
CalamityJane
 
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Postby Jeanie Kelley » Sat Dec 15, 2007 12:45 pm

Yesterday Tom's neurologist called to give the the oral report. The written report will come in several more months.
1. PSP
2. 70
3. 6-29-97
4. 2000 as Alzheimers, PSP 2001
5. Male
6. Home
7.Self
8. Spouse
9. PSP with CBD
Jeanie Kelley
Tom passed away on June 29th, 2007, brain autopsy said PSP and CBD.
Jeanie Kelley
 
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Location: USA

Death certificate..

Postby Treesee » Mon Jan 28, 2008 1:57 pm

Wlusham, Yes, my mom died of PSP, on death certificate, and was showing signs in her early sixties,..not diag. until 68. and she died at 73. She lived ten years longer, but was pretty bad with all the motor control gone. She couldn't talk, walk, nor swallow. The second part of death certificate said Kidney failure, thirdly, heart failure. Thanks for asking.; Treesee
Treesee
 
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Postby Kathy_A » Sun Feb 03, 2008 3:46 pm

1. PSP
2. 76
3. 12/18/2007
4. Misdiagnosed in 2001; PSP diagnosis in early 2006
5. Female
6. Home
7. Combination of self, sisters, in-home care, and hospice.
8. Daughter (one of 11 children)
Mom, JoAnn (76 years old), was misdiagnosed in 2001, and finally diagnosed with PSP in 2006. Everything finally made sense to us. Mom peacefully went to heaven on December 18, 2007.
Kathy_A
 
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Re: Cause of death - Zane McClean

Postby 140948 » Wed Feb 06, 2008 6:24 pm

1. Progressive Suprenuclear Palsy

2 .60

3. January 29, 2008

4. 2004

5. Male

6. nursing facility/hospice nurse with him when he passed

7. self until he went to nursing facility on October 30, 2007

8. spouse

9. brain was donated for research, however pathology report not received yet.
Shirley McClean
140948
 
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Postby carolm » Thu Mar 27, 2008 8:53 am

1. 1. Progressive Supranuclear Palsy 2. Cerebrovascular Accident

2. 75

3. 21/03/2008

4. Diagnosed 2005
(symptoms with benefit of hindsight started at least 2003 poss earlier)

5. Female

6. Nursing home

7. Nursing home staff predominantly

8. Daughter-in-Law
carolm
 
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Location: Scotland, UK

Survey Response

Postby larrysanne » Sun Apr 06, 2008 11:45 am

1. Acute Respiratory Failure/Sepsis/Supranuclear Palsy

2.73

3.1/18/08

4.2002 -"Parkinsons"/ 2004-PSP

5.Male

6.Hospital (Hospice unit)

7.Family member

8.Spouse

9.PSP and Argyophilic grain disease
larrysanne
 
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