Collective Interviews for Book


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Collective Interviews for Book

Postby Tracey Noel » Thu Jan 05, 2012 12:15 pm

We greet the new year full of hope and promise. I think of the holiday season as an overstuffed, beautifully packaged gift. Untie the bow and memories spill out. I grab them one by one as they swirl around me and begin sharing them. Have you ever noticed sharing past events helps us relive the happy times? I think it can also help us make some sort of sense out of difficult times too.

I promised my dad I'd write a story about his life, before, during and after PSP. I'm so proud of him - of my whole family. And then I realized, he's MY star. Each of us on this forum has had experiences with their loved one before, during and after PSP. We all have a star we are proud of, we all have memories to share - happy and sad.

Reading the ups and downs on this forum, I want to reach out and somehow make things better. Somehow ease the hurting. Try to understand. There's an invisible connection; like we're part of a family. My father was put on this earth for many good reasons. His life was turned around by this rare, destructive disease we know too well, Progressive Supranuclear Palsy. I don't want it to end there.

If you're interested in being interviewed by me for a collection of stories, please contact me. We can have private discussions or emails. I'm hoping to raise more of an awareness and make something positive come out of all of the suffering.

Thank you
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Postby Robin » Thu Jan 05, 2012 12:59 pm

What a great project -- writing about your dad and other PSP stars! Can't wait to read it.
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Postby Tracey Noel » Thu Jan 05, 2012 8:13 pm

Thank you! I think it will do a lot of good for a lot of people...
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Postby Alice Gillam » Fri Jan 06, 2012 10:16 pm

If I can be of any help for in your project, let me know, my husband has psp.
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Postby Tracey Noel » Fri Jan 06, 2012 10:43 pm

Warm wishes to you and your husband, Alice. I would love your help. Would you prefer email or telephone? You can private message me any time and we can take it from there.

Thank you for responding!
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby Tracey Noel » Sun Jan 15, 2012 11:48 am

Hi everyone. I thought I'd post an update on the progress of the book. I've interviewed a few relatives of PSP patients - some families have multiple members who want to be involved. I thought I'd let you know what I'm looking for. This was the first explanation that I'd written down for someone and its seems to sum it up:

Without prying too much, memories of your point of view (& possibly his or her) of the person you knew when you met. Some of the good times - and bad if you wish - before during and after.

What did (s)he do for a living?
What were some of the first "symptoms" you noticed?
What makes you most sad?
What does (s)he do now, every day to put a smile on your face?
Since the time of his or her passing, what lives on?

Honestly, the only thing in particular I'd like is what you'd like to share. This book will be a compilation of tributes to our loved ones.

The experience so far has been rather therapeutic to listen, share and reflect. Thank you again.
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby HelenK » Mon Jan 23, 2012 3:41 pm

Hi Tracey,
If you would like to have my help, I would be glad to do whatever is possible. My husband has PSP and we are dealing with what we think is pneumonia. He is presently on hospice, which is a great help. He has had a temp for the last 2 weeks, and has been on an antibiotic for 5 days. No results, so far! I would like to tell his story. I'm afraid we are getting close to the end. All we have left now is prayers. You can contact me by e-mail.
My husband has psp and is currently on the drug study davunetide. He is in the last stages of the disease.
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Re: Collective Interviews for Book

Postby Robin » Mon Jan 23, 2012 4:36 pm

HelenK,
I don't think you have entered an email address into your profile so Tracey won't know how to contact you. She can send you a private message. Do you check those?
Robin
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Re: Collective Interviews for Book

Postby Tracey Noel » Mon Jan 23, 2012 4:46 pm

Thank you, Robin. I did send a private message. I thought I was missing the email address... T
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby MAGGIE » Sat Jan 28, 2012 9:24 am

Hi Tracey, I'm just new to the forum. my Husband has had PSP for 2 years now, but looking back probably longer, he's 54yrs old. if you send me a list of questions i will reply. This must be the hardest disease anyone has to suffer, i love him more each day as i see how he handles the disease, my aim in life is to hear him laugh unfortunately this makes him choke, i miss him yet he is still hear. regards Margaret
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Re: Collective Interviews for Book

Postby Tracey Noel » Sat Jan 28, 2012 6:20 pm

Hi Maggie, welcome to the forum. If you haven't already, you'll meet many wonderful people here. It's a great place to come to vent, listen and get or give advice. Or just talk about nothing. We all understand.

The "list of questions" I have is, simply, what do you want to tell. My idea is to honor our loved ones. To introduce to the world the amazing husband, mother, wife, father, brother, sister, etc.. This disease stole each smart, funny, caring, important individual from us over a long horrible process. What would you or your family like to share about your husband?

I felt the same way about my father as you do your husband. He was always positive - even while he suffered through PSP. The hospice nurses enjoyed their visits. "Walking into your parents' house, there's so much love it's like chocolate," the social worker said. They got to know him in his final year. I'm proud of him and our family. I want the world to know us - before, during and after PSP. There will be new families with diagnosis. What would you like to share?

I'd love to continue previous interviews also. Please contact me again, the last thing I want is to become a pest. In place of, or addition to emails, we can talk over the phone or Skype. Depending on location, we could meet in person.

Thank you and best wishes, T
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby Tracey Noel » Sat Jan 28, 2012 8:20 pm

I may have left out an important factor... There were times, as we have or will experience, that were unbearable to live through for my father and for us. I will write about them also. It's part of the entire package. He, we, did not go through this for nothing. I want to make it something more. Meaningful.
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
Posts: 23
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Location: massachusetts

Re: Collective Interviews for Book

Postby dwarren » Tue Feb 07, 2012 9:50 am

Tracey: I am new to this forum...This is my first time to post. I'm very interested in your book containing interviews from family members of loved ones with PSP. My dad passed away on January 23, 2012 due to complications of PSP. He was given the diagnosis (finally) in 2010; although, he had began exhibiting symptoms as early as 2006 (possibly late 2005). I would love to honor his bravery and suffering in any way I can. If I can contribute to your collection of stories, I know it would be therapeutic for me...and I know that it would've made my dad very proud. There seems to be a common thread among those of us who have watched our loved ones be devoured by this "monster". We all want others to really KNOW what we, as caregivers, have experienced, as well as what our dear loved ones have endured. We hear & know alot about death related to cancer and other more common diseases; however, PSP is equally, if not more, ravaging than even cancer since there's NO treatment & absolutely NO cure.

Please let me know if I can contribute my dad's story. I would be very proud to speak for him and to honor him in this way!
Thank you, Deborah
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Re: Collective Interviews for Book

Postby Tracey Noel » Tue Feb 07, 2012 11:13 am

Deborah,

I'm sorry to hear about your father. You spoke the exact words of what I'm trying to convey. I would love to talk with you. I will private message you my phone number so we can get started when it is convenient to you. Thank you!
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby Robin » Tue Feb 07, 2012 11:28 pm

Deborah,
My condolences to you on your recent loss. Did you post previously with a different username?
Robin
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Re: Collective Interviews for Book

Postby Alice Gillam » Wed Feb 08, 2012 6:52 pm

Deborah, So sorry about your Dad. You wrote that so perfect, people, even close family and friends don't really know of the extent of heartbreak with this horrible disease.
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Re: Collective Interviews for Book

Postby dwarren » Thu Feb 09, 2012 8:49 am

Thank you for the condolences. I'm new to the site, and that was actually my first time to post (I haven't posted under a different user name). I'm so exicted about being a part of this forum. It is very therapeutic each time I log on and read others' posts. It's comforting to be "among" those who have been down the same path. It's amazing to connect with people you don't know and will probably never even see, but yet we all share something so very special! And, Tracey, I will try to call you as soon as I can. If there's a time that's better for you, please private msg me so I'll know. I am a school counselor, so my work hours are very predictable. Thank you so much for responding to my post! deborah
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Re: Collective Interviews for Book

Postby JimH » Fri Feb 10, 2012 8:21 pm

Would be happy to participate in your work - Jim
My father, Pastor EH, symptoms since 2001, diagnosed 2004. His spirit returned to God who gave it 1-25-2012, age 82 yrs, 11 mo.
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Re: Collective Interviews for Book

Postby Tracey Noel » Mon Feb 13, 2012 9:36 am

Wow, this thread has been showing more activity lately. I'm happy about that! Deborah, I'm glad you asked about my availability and figured I'd post it to make it a bit easier for everyone to think of a time slot for talking with me. I leave the house to work Wednesdays all day and Thursday until noon. We can chat over the phone or on Skype - however anyone chooses - morning, noon and/or night. Either I call you or you call me. Whatever YOU are comfortable with. Emails are fine to begin with but I'd really like to speak with you. I'm easy to get along with!

Through private messages we can exchange numbers. I'll be on the lookout...

Thank you everyone!!
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Location: massachusetts

Re: Collective Interviews for Book

Postby Jo-Ann » Sun Mar 04, 2012 6:19 am

Hi, Tracy. If you still need people to interview, I'd like to help. My husband has PSP, and is probably nearing the last stages. Jo-Ann
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Re: Collective Interviews for Book

Postby Tracey Noel » Mon Mar 05, 2012 5:38 pm

Thank you, Jo-Ann. Yes, I'd love to talk with you. I'm on vacation until March 17 and still working on this, but have slowed down a bit. The past few days internet was limited and it was nice to see your response... I've got it full force now. Maybe we can talk some morning?

Well wishes to you all. Thanks again,

Tracey
Dad diagnosed October 2007. Showing symptoms since 2003. d. 10/01/10 He always wore a smile! LIVE ~ LAUGH ~ LOVE
Tracey Noel
 
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Re: Collective Interviews for Book

Postby Darla » Thu May 31, 2012 9:11 am

I would love to particpate in your project...I'm also new to this forum... My dad Diagnosed in November 2011....
Daddy has PSP. DX November 2011.
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Re: Collective Interviews for Book

Postby webgirl10 » Mon Aug 06, 2012 3:16 am

Hi Tracy, I;ve been on this forum before, but life is so hectic living with this monster that I barely have time to spend on much else. I would love to be included in your collections. My wife (same sex marriage) of 53 years is now at end stage PSP. It has been a long and suffering journey and it is not over yet. Please contact me. I will give you my phone number thru email.
Webgirl10@optonline.net
Caregiver...my partner of 48 years, was diagnosed in 2005. We are both in our early 70's we live in New York
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Re: Collective Interviews for Book

Postby HelenK » Fri Aug 24, 2012 7:21 pm

Hi Tracey,
This is Helen and I'm sorry I never got back with you! It has been a long journey and we're still traveling down that long narrow road. It has been like a roller-coaster ride. One week good, the next 2 or 3 are bad.
If you still need my help, my email is helenmkoehler@yahoo.com
Helen
My husband has psp and is currently on the drug study davunetide. He is in the last stages of the disease.
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Re: Collective Interviews for Book

Postby KDupree » Sun Oct 06, 2013 8:04 pm

Hi Tracey,
I missed this post, but would very much like to contribute our story for your book. My husband, Tim, passed away in August. I have posted several times about his journey with PSP and you may learn some details there. Please, contact me for more if you are still working on this project. I love that you are calling our loved ones "stars". Every person diagnosed earns multiple stars everyday as the decline progresses with PSP. I agree that others can learn from our telling of their stories and ours. That knowledge was learned at great expense. Letting those "stars" shine will help both those who are still in the midst of the disease and those who have yet to learn their loved one has the diagnosis. I am cheering you on! Can't wait to read your final project.
God bless,
Kathy

*I will check my information to see if I gave my email address. Once you make contact with me, we can exchange phone numbers to talk.*
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: Collective Interviews for Book

Postby Belisabelle » Sat Apr 29, 2017 6:17 am

Hi tracey,

just wanted to say: what a great project and I am looking forward to reading it!

Love,
Bella
Last edited by Belisabelle on Mon May 15, 2017 4:23 am, edited 1 time in total.
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Re: Collective Interviews for Book

Postby eplowman » Sat Apr 29, 2017 11:20 am

Tracey,

Are you still collecting stories from caregivers of loved ones with PSP?

Have you been able to publish any of your stories yet in any online, blog, or other publications?

If so, could you please list the internet links.

Cheers and good luck.

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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