"PSP: A Primer for the Newly-Diagnosed" (video)


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"PSP: A Primer for the Newly-Diagnosed" (video)

Postby Robin » Sun Jun 29, 2014 10:03 pm

Though this CurePSP video was designed for those dealing with a new diagnosis of PSP, I think the hopeful messages in the video are worth listening to, regardless of the "stage" of PSP with which you are living. I've been handing out the DVD at our caregiver support group meetings for the last 18 months. The video is also available online here:

www.psp.org/newlydiagnosed/pspvideo.html

I've copied my notes on the video below.

Robin

*******************************************

PSP: A Primer for the Newly-Diagnosed (video)
CurePSP
Published in late 2012 (Robin's guess)

This 14-minute video includes:
* actress and CurePSP national spokesperson Patricia Richardson
* expert neurologist Dr. Lawrence Golbe
* patient, Thomas Timm, and spouse, Debra Timm
* volunteer Becky Hill


PATRICIA RICHARDSON

Getting the facts is vital.


LAWRENCE GOLBE, MD

PSP is a degenerative disease of the brain. It causes brain cells in many different areas to not work well, and then die off.

There are only 4K-5K in the US with the disease. About three times that many have the disease but aren't yet diagnosed with it.

1:52 Most common first symptom: unheralded falls. This occurs in 60-65% of people. There's no change in walking to go along with the falls.

2:03 Next most common symptom is a change in behavior -- becoming more withdrawn or more outgoing.

2:11 PSP very rarely runs in families. Fewer than 1% of people with PSP have a family member who is affected.

2:50 Many of the symptoms of PSP can be treated with existing medication.

3:08 There is also physical and rehabilitative treatment, including exercise, that can be very helpful to someone with PSP.


RICHARDSON

Work with therapists as soon as possible, after you've been diagnosed.


THOMAS TIMM (patient)

4:30 Balance problems. Then memory problems.

Upon receiving the diagnosis, my wife was terrified.

Ask your doctor to be very upfront and tell you exactly what they expect.


DEBRA TIMM (wife)

6:18 First symptoms: forgetful and distant (not engaging in conversation).

Diagnosis felt like we were both being hit by a train. A lot of things were probably said that we didn't hear.

7:30 My goal every day is to make his day the best it can be.

When you love someone, there is no burden.


BECKY HILL (volunteer)

8:18 Became a volunteer after caring for my late husband. I wanted to be able to pass along the knowledge I gained.

8:50 Great fulfillment in volunteering. Wonderful to see a difference being made.

Participating in a support group is really important. You find out you are not alone. There is plenty of hope. There's opportunity to share your knowledge to try to help others who are going through the same thing.

10:00 Most people feel they aren't support group-candidates. I knew I needed help because this experience was far greater than me. I encourage everybody to make that first call or contact.


RICHARDSON

10:40 Maintaining hope is vital. Hope is as vital as oxygen. Those with hope may live longer and more meaningful lives.


GOLBE

11:07 Hope is a valid scientific opinion. There are lots of new developments going on in understanding and treating PSP. It is realistic to be hopeful. I am hopeful. All the researchers I know are very hopeful. They all expect their efforts will improve the lives of sufferers with PSP.

A good emotional attitude towards one's illness does help the long-term outcome of that illness.


HILL

11:59 There is going to be a cure some day for PSP.


D. TIMM

12:11 Hope is a state of mind. You need to have a good state of mind. Faith, and you have to be strong.


T. TIMM

12:23 I am very hopeful for the future.

12:35 If you have recently been diagnosed, just remember - there is hope. Keep exercising. Enjoy each day. Take one day at a time. Keep smiling.

[Robin's note: There's a cute surprise at the very end of the video.]
Robin
 
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