Foundation for PSP | CBD and Related Brain Diseases

[eplowman]

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.

[josephblanc]

1. PSP

2. 71

3. 8/10/2002

4. 1997

5. F

6. Nursing Home

7. Family Member

8. Spouse

Good luck,
Joe Blanc

[josephblanc]

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

[daddysgirl]

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

Daughter

[aboc1960]

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
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

[Nancy Spiekhout]

1) Heart Failure, PSP
2)71
3)11/13/04
4)2001
5)Female
6)Home
7)Husband
8)Daughter

[daddysgirl]

WOW ... look at the ages at time of death.

[NancyL]

1. PSP
2. 71
3. 6/21/2004
4. 1/2002
5. Female
6. Home
7. Her children
8. Daughter

[Squirrel]

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

[Patriciawray]

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

[snoopy47]

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

[santafe]

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

[Beth]

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. Family member

8. Daughter

[eplowman]

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.

[wlusham]

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?