How has the forum and CurePSP helped YOUR family?


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How has the forum and CurePSP helped YOUR family?

Postby eplowman » Mon Feb 06, 2012 11:40 pm

Hello, all.

I recently discovered one of the neat things that the governing board of CurePSP: Foundation for PSP | CBD and related Brain Diseases, which created and sponsors our forum, does. Its board members, at their periodic meetings, take time to listen to representative family members of a loved one with PSP or CBD briefly tell their stories, and how the foundation and forum have helped their family. It's one of the ways a responsible board stays in touch with the heartbeat of the people the organization serves and to ensure its mission objectives are being achieved.

To me, that was an inspiration and encouragement to hear. Then I thought, hey, many of us have found here a welcome, understanding, solid and experience-based information about the disease and care needs of our loved one who has it, research updates, compassionate and wise counsel, a lending hand for support, cyber hugs, a place to vent or cry without shame, tips on providing optimal care for our loved one, and more -- including a special sense of kinship with others here in the same straits. What a comfort just to know that we are not alone....

So, can you take a minute or three, and share with us one or more ways the forum or the foundation has been a help to you. Was/is there something special that comes to mind?

Ed P.
Last edited by Moderator on Thu Feb 16, 2012 2:39 pm, edited 3 times in total.
Reason: Temporary sticky
|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: How has the forum and CurePSP helped YOUR family?

Postby forrestseale » Tue Feb 07, 2012 12:00 am

Mostly by just letting me know others ar traveling or have traveled this path. I do not feel so alone watching my wife as this disease slowly takes her frm this world.
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Re: How has the forum and CurePSP helped YOUR family?

Postby eplowman » Tue Feb 07, 2012 12:47 am

Forrest,

About when did Carolyn's first symptoms appear? Did they include unexplained falls?

When was she diagnosed with PSP and where?

I was deeply moved to see you offer to sit with another PSP patient at your house to allow his spouse/caregiver to attend a support meeting. Awesome. I know you are extremely busy caring for Carolyn, housekeeping, tending the yard, etc. You must be perpetually exhausted and stressed. I hope you can get some respite breaks.

And, yes, just knowing I was not alone was a prime benefit of the forum for me, too. I discovered the forum in 2005 and am still here. The same story for other regulars here, too.

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: How has the forum and CurePSP helped YOUR family?

Postby forrestseale » Tue Feb 07, 2012 12:30 pm

Carolyn started having vision problems in Nov. of 2007. By March of 2008 she could no longer handle her job responsibilities and for the first time in her life she was let go. Her symptoms gradually worsened, we visited many, many Drs and finally were sent to a Neurologist in Feb. of 2010. She was diagnosed with PSP in March of that year by Dr. Elizabeth LaKind in Santa Fe, NM

Her falls started in 2009. We have just recently started pureeing all her meals.

Thanks for your concern.
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Re: How has the forum and CurePSP helped YOUR family?

Postby cruzgal » Thu Feb 09, 2012 12:41 am

The CurePSP website was recommended to us by my mother-in-law's neurologist at the time of her diagnosis and the information about the disease was invaluable in preparing us for what we could expect. No, that's incorrect--NOTHING could have prepared us for how awful this disease is and how difficult it is for the patient and those who love him or her. But this website was one of only a few places that had any information. We've printed much of what is offered here for those who have been responsible for her care, first at the Assisted Living Facility and later at the Nursing Home.

Reading the forum and knowing what others have dealt with and are facing has been even more helpful as time has gone on. It seems that every time we're going through a new development, someone else is posting similar concerns. And whenever I've posted a question or concern, others have been more than gracious in answering those questions.

We've directed many people to the website for more information about PSP.

Brenda
Beloved Mother-in-Law was PwPSP, dx Sept. 2008 at age 80, symptoms since early 2006.
Elizabeth C. b. 12/14/1927, d. 4/07/2012
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Re: How has the forum and CurePSP helped YOUR family?

Postby MUSICFAMILY4 » Fri Feb 10, 2012 8:19 am

Our family helped and supported the primary caretaker (father) to care for our mother over the course of over 6 years of active disease (probably began even earlier). We found this website and began research which all along helped us to find resources (doctors, therapists, etc.), webinars which helped us (speech, swallowing) to try products and assistive devices which sometimes helped and sometimes did not, but it is always better for families to have things to try to alleviate the suffering. The stories helped us to somewhat prepare for the course of the disease and understand that at some point hospice was not an option, but a necessity to make sure to have medications on hand when the breathing got difficult. At one point we contacted a couple of people via phone who were very helpful in hearing our frustrations and offering sympathy and advice or resources. Finally, at the end we utilized the forum board and were touched at the time and length of kind responses as we were experiencing hospice and the final stage of PSP. The compassion of PSP.org's leaders, members, professionals has touched our family in such a way as to actually touch and help the patient because I believe it made us better caregivers. We learned that at some point we would need to puree food, need to try special straws or cups, etc. We will be forever indebted. The worst part of this disease is there is no medication to alleviate the suffering unlike other types of illnesses. Our family's experience has convinced me that now I would like to be a part of doing something to give back - participating in a walk or fundraiser, offering to listen to another family, etc. and I believe when things settle down we will offer to participate in some small way to give back a very small portion of what has been bestowed upon us. Thank you.
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Re: How has the forum and CurePSP helped YOUR family?

Postby CChaxan » Sat Feb 11, 2012 6:09 pm

We left the Movement Disorder Clinic with a PSP pamphlet and relief that my husband probably didn't have Parkinson's Disease...then I *googled* PSP, which led me here.

I used the information from the description page to make an easy-to-read bullet point information sheet (crediting the site) for my husband's many medical professionals, so that they know he might say "yes" when he means "no" and that he might jump up and fall backwards, so he can't be left alone on a table during a procedure or exam.

I used the printed information for Physical Therapy. They had never treated a patient with PSP, and they were the people recommending a walker for my husband per the doctor's request. (I also learned about the Ustep here.)

I used the forum search to look up issues involving dystonia, downward gaze palsy, fatigue, insomnia, constipation, frequent urination, falling, coughing after eating, and many others.

Stephanie Bacca generously guided me through the process of trying to set up a support group for patients with atypical parkinson's disorders in our area. (I am still working on this. A bad forward fall from the bed set us back. Nothing broken, but the dr said my husband would look pretty horrible for weeks as all the pooled blood moved down his face through the soft tissues. Ahhh...).

The webinars and videos provided answers to questions I had not yet formulated. We have a wonderful Movement Disorder Specialist, and on our return visit he commended us for educating ourselves. It makes his job easier. I gave him copies of some of the things I learned from CurePSP.org.

I have never participated in an on-line forum before, but it didn't take long to recognize the folks here know what they are talking about and are kind enough to help others in the struggle.

I'm sure I am forgetting other ways CurePSP has helped us, but I know I will be here in the next few days or weeks to research another new issue ---they do seem to appear quickly sometimes. It is also comforting to know that others are coping, or have coped with the same issues. For a new family (often still in a bit of denial) organizations such as this are a true blessing.
CC
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Re: How has the forum and CurePSP helped YOUR family?

Postby Janet Edmunson » Mon Mar 18, 2013 8:46 am

Thank you all for your comments on this question. I have shared some of these with the CurePSP Board members. We are glad to see the forum being used and supporting your journey with PSP, CBD or MSA. I only wish it was available when I was caring for my late husband, Charles (diagnosed with PSP and confirmed autopsy of CBD).

Please let me know directly if you have suggestions of how we can improve to better meet your needs. janet@janetedmunson.com.

Janet

Janet Edmunson
Chair of Board of Directors, CurePSP
Janet Edmunson, M.Ed.
Speaker and Author of "Finding Meaning with Charles: Caregiving with Love through a Degenerative Disease"
www.findingmeaningwithcharles.com
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