Tag Archives: Facebook

How to “Redirect” an Alzheimer’s Patient: Caregiver Tips

28 Feb

joindefeatdementiaHow do you “redirect” a dementia patient who wants to “go home” or  speak to someone who is no longer alive? How do you respond to a loved one who is living in a reality which isn’t yours? Here are a few tips that I posted yesterday on  Defeat Dementia, a Facebook group which provides information and support to caregivers of dementia patients:

• Don’t worry about convincing her that her loved one has already passed away, but to pay attention to the emotion she is expressing.

• Sometimes it is helpful to encourage the patient to talk about her loved one. Try questions like “what did you do with your (mom) when you were little?”, “What do you want to say to your (mom)?”

• Perhaps having a photo of her loved one available that you can look at together, ask her to tell a story about her loved one, might be strategies that would satisfy her.

• If necessary, some caregivers have tried a white lie, like “Your (mother) lives someplace else now.” or “I can’t take you there today. Maybe tomorrow.”

• It’s helpful to try to stay in the patient’s reality, and the death of her loved one is no longer a part of her reality, so saying her (mother) is dead only confuses her.

Source: UCSF Memory and Aging Center

For more information, visit the Defeat Dementia website, join our Facebook Group, visit the UCSF Memory and Aging Channel on YouTube, or check out UCSF’s Memory and Aging Center website.

links for 2009-02-17

17 Feb

What is CJD: Creutzfeldt-Jakob Disease?

1 Feb

Here is  a brief CJD FAQ, taken from UCSF’s Memory and Aging Center’s website. To learn more, visit the CJD website.

What is CJD?

Creutzfeldt-Jakob disease (CJD) is a human prion disease caused by a normal protein that becomes misshapen into a “prion”, builds up in the brain and disrupts normal brain function. It is a rare disorder that is fatal, usually within 6 months of diagnosis and a year of the first symptom. In the United States, there are about 300 new cases per year.

Creutzfeldt-Jakob disease (CJD) belongs to a family of diseases called “prion disease” [pree-ahn] caused by abnormal “prions”, microscopic infectious agents made of proteins. Prions cause a number of diseases in a variety of mammals, including bovine spongiform encephalopathy (BSE or “mad cow disease”) in cattle and scrapie in sheep.

What are the Signs and Symptoms?

Typical first symptoms include personality changes like anxiety and depression, memory loss, confusion and impaired thinking. Difficulties with balance and coordination as well as involuntary, jerking movements are also very common. People eventually lose the ability to move and speak. Pneumonia and other infections often occur in these patients and can lead to death.

What are the Tests?

When a diagnosis of Creutzfeldt-Jakob disease (CJD) is suspected, your doctor will likely order a number of tests. These can be helpful to either exclude other neurological diseases or support the CJD diagnosis.

Can I Participate in Research?

The CJD research at UCSF’s Memory and Aging Center focuses on understanding prion disease, diagnosing it earlier and more accurately, and developing treatments for CJD.

Other Resources

Please visit CJD Aware! a wonderful organization which provides information and support.

Get involved! Join the Defeat Dementia group on Facebook. Meet others in the fight against degenerative brain disorders such as Alzheimer’s disease (AD), non-AD dementias, including Frontotemporal Dementia and Creutzfeldt-Jakob disease (CJD) and others.

Here’s a link to the CJD video playlist from UCSF’s Memory and Aging Channel on YouTube.

Here’s a video featuring Dr. Michael Geschwind about the basics of Creutzfeld-Jakob Disease:

Mike Homer Has Died of CJD

1 Feb

I am sad to report that Internet industry legend Mike Homer has died today of CJD. This news was first reported this evening by Kara Swisher in her BoomTown blog. Kara writes:

We all liked Mike. In fact, we all loved the pugnacious, energetic and restlessly entrepreneurial Silicon Valley exec.

Sadly for those who knew him, Mike Homer died today at his home surrounded by family and friends, after a long battle with a severe illness. He was 50.

Homer is survived by his wife, Kristina, and three young children: James, Jack and Lucy.

His funeral is at Saint Raymond’s Catholic Church in Menlo Park on Thursday.

In 2007, Homer was diagnosed with Creutzfeldt-Jakob disease.

A rare, neurodegenerative “prion” disease, which in Homer’s case has occurred sporadically rather than via infection (the well-known variant that occurs in animals is called mad cow disease), CJD’s incidence is one case in a million annually, and few survive beyond a year after exhibiting symptoms.

His illness inspired his family and many friends to find treatments and a cure for the cruel disease and include the man–Dr. Stanley Prusiner–who won the Nobel Prize in 1997 for discovering prions, infectious agents that are at the heart of CJD.

Mike Homer was treated by specialists from UCSF. Homer’s fight made a tremendous impact on those who have been researching this devastating disease and raising public awareness about this and other forms of dementia.

Read about the Fight for Mike and Defeat Dementia campaigns here.

To learn more about current research and treatment options for CJD and other neurodegenerative diseases as well as how you can help, visit UCSF’s Memory and Aging Center’s CJD website or YouTube Channel.

The New Twhirl-Seesmic: Preview Release Invite

25 Jan

logoTwhirl is a desktop client for social software such as Twitter and  Friendfeed. Just this weekend, Loic Le Meur introduced a new preview version of Twhirl which includes Ping.fm and Seesmic video integration.It’s very cool. To get your beta invitation to this special preview, click here.

The following are a few of the new features of this new preview release:

Catch more tweets from people talking about you and then engage them:  your @username timeline displays all of the tweets that mention your username.

Post your messages from Twhirl to Facebook, MySpace, LinkedIn, WordPress and a other services: this is all done with Ping.fm integration; in addition you can now also send a video via Seesmic to all the social media nets you setup.

Record a video and reply to your friends straight from Twhirl: reply to any of your friends straight from Twhirl and follow the conversation–in real time.

Follow in near-real time any topic, brand or username with the new saved searches showing up in your main timeline: your friends tweets and saved searches appear in the same stream to make it all easy to follow.

Check out Robert Scoble’s interview with Loic — it’s an informative walk-through of Twhirl’s new features:

[kyte.tv appKey=MarbachViewerEmbedded&uri=channels/6118/326147&tbid=k_2165&premium=true&height=320&width=265]

Sources: Loic Le Meur, Robert Scoble

links for 2009-01-11

11 Jan

links for 2009-01-10

10 Jan