The Tangled Neuron

New Memory Loss Site (Portuguese)

Judy Robbe runs support groups and works towards improving the quality of life for people with dementia and their families in Brazil.  If you speak Portuguese, check out her beautiful new site Harmonia de Viver.

Brain Donation: Q & A with Nancy Teeten at USF's Byrd Institute

Raelynn Wapinnsky, Nancy Teeten, LCSW, CAP, and Emelyne Cherenfant, MSW, LCSW

When my father died, we found it difficult to donate his brain for research, and to request an autopsy.  Some of that difficulty was because we hadn’t made arrangements in advance.  Earlier this week, I interviewed Nancy Teten, Assistant Director of the Clinical and Translational Sciences Institute at the University of South Florida.  She coordinates the Byrd Institute Brain Bank here in Tampa Bay, and I talked with her about what you should do if you’d like to donate your brain for research.  Emelyne Cherenfant, a USF social worker and Raelynn Wapinnsky, an intern, sat in on the discussion.

Are We Stifling the Voices of People with Dementia?

When my father was in his late 60s, he started having trouble finding words.  As his memory and thinking went downhill, so did his speech.  I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word.

     Jackie Hunt Christensen

After talking with Jackie Christensen, I’m not so sure that was a good idea.  I met Jackie last week at the FDA Patient Representative Workshop we both were attending.  She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.

Marcel Brasey's Speech at an Alzheimer's Conference

Marcel Brasey

Ten years ago, Marcel Brasey was diagnosed with Alzheimer’s at age 54.  He maintains a French-language website called Survivre avec une maladie d’Alzheimer about his experiences, thoughts and philosophies.

Last month, he traveled from his home in Geneva, Switzerland to give a talk at a La Maladie d’Alzheimer Un Defi Social (Alzheimer’s Disease:  A Social Challenge), a large conference in Paris.

The conference organizers asked him to present the patient’s view, Marcel says, and with the help of his family and a memory clinic in Geneva, he delivered a talk [Download Marcel Brasey's speech].  Congratulations Marcel!

Memory Loss and Home Safety

                    

Heather Black, MS, CCC, SLP & Jack Partington, MA, PT

If you’ve been diagnosed with Alzheimer’s or another dementia, or just have some mild memory loss, simple changes around the house can make your life safer and easier.  This was the topic of a talk given recently by Jack Partington and Heather Black, in-house physical and speech therapists at Freedom Square, a Brookdale Senior Living community here in Florida.