Support Group Minutes

Below are the minutes from our monthly caregiver support group meeting. Meetings are free and open to the public. For more information click on the "Support Group" link.  

 

FTD Support Group

Meeting Minutes- July 23, 2013

Announcement: Is there interest in the group having a guest speaker come talk about a new drug trial on tau? Tau Rx company wants to come chat. In the past, there have only a few clinical trials at Jax Mayo and USF. Previous trials have had some issues, hope with this for the future. (Consensus was yes, there is an interest).

Welcome to Dr. Dody

  • Director of UF Memory Disorders Clinic
  • Patients come to office, do an evaluation, send report to home physician to follow-up
  • She is leaving a hard copy of AD Education Manual for the group to use. It will be located in the UF Cognition and Language Lab.
  • Shared important resources, especially online and local
  •  Alz Place- adult day health care for people with progressive dementia; highly recommended by Dr. Dody
  • Shared resources for disaster relief, especially during hurricane season. Know which shelters provide accommodations for people with dementia
  • Checklist for family matters – bills, power of attorney, etc.
  • Have a family gathering with those that you trust

Question- how do navigate the SSI before FTD patient is normal retirement age?

     First, must assume that your initial application will be rejected. Find out who your case manager is and meet with them about what is required on the application form. Give what you think are ridiculous examples, i.e. a company would have to hire two people to ensure that the job could be done with the person with FTD.

     Can also get a good attorney who will help with wording. Dr. Dody can also offer help if you want to run a paragraph by her.

     FTD is a special exempt condition that can get SSI 5 years before AD

FTLD Review

  • Early symptoms- loss of boundaries or self-awareness (anosognosia)

Question- how to deal with that as a caregiver?

     Know ahead of time when things might come up and keep an arsenal of distractors (i.e when at home- wrapped snacks, going outside, inside activity; when out in the community- pictures to spark convos to allow the emotion to calm down), bring objects to allow her to squeeze and do exercises, get patient to help the caregiver, spark conversation with old family stories

Things that increase fatigue factor can make things worse

Driving is a major point of contention

  • Doctor can revoke license
  • Make the car unusable
  • Can report anonymously to DOT tip line
  • Make paper copy to include in medical record of physician’s record

Question- how to find a good primary doctor that understands and believes the problem? 

     Suggestions: Dr. William Rios, Dr. Alan Goldblatt

Question- when trying to find the right word, when as the caretaker to intervene?

     Difficult to balance. Whatever system works with your family that keeps the family happy.

  • Exercise- research has found that walking is one of the best exercises for the brain
  • Biking, resistance training, gravity weight-bearing exercise also good
  • 30-40 minutes 5 days/week
  • Important to stay hydrated, lots of fruits and veggies
  • Reduce negative stress
  • Constant release of cortisol can dampen areas of short term memory and longer term storage
  • Indulgent activities- especially for caregivers that are just for themselves to distract them for awhile

Question: correlation between FTD and night horrors?

     Sleep does change with some people with FTD, and some meds should not be taken at bedtime (i.e. airicept should be taken in the morning after breakfast). Avoid fats and carbs late at night because sleep quality will be inferior. Sometimes there’s something in the room that can be bothersome when waking. Its also important to start winding down in the evening by avoiding stimulants (caffeine), watching the news, arguing, stimulating tv programs, no pets in the room.

Next month: Clinical trials speaker. Meet again at Milhopper library at 3pm. Date set for Tuesday, August 20th.

 

Is this covered under warranty?

IMG_20130610_130516_816.jpg

One wonders if spilling an entire can of Chunky soup into the front vents of my computer voids its warranty.  Two positives --- the computer fan seems awesomely quiet now, and my office smells delicious. Dude, it's a Dell!

Bar association - legal woes?

Google Analytics notes a hit on our website from the American Bar Association.  My first thought is that someone out there is going to sue me.  If this is the case, I must make that party aware of two things:  1) I might be innocent; 2) I am not the kind of doctor who makes any money. ​

Screen Shot 2013-05-19 at 12.03.56 AM.png

Authors and the dissolution of language in Alzheimer's Disease

A number of my very favorite authors have been impacted by Alzheimer's Disease or associated disease variants.  Gabriel Garcia Marquez, W. Somerset Maugham, and Terry Pratchett are among the most prominent that come to mind.  Dr. Peter Garrard wrote a brilliant article pubmed link here on the dissolution of narrative in the work of Dame Iris Murdoch, a renowned British author. As I revisit Dr. Garrard's work, I wonder if world class expertise in writing (or other creative pursuits) would respond uniquely to cognitive treatment or require a tailored approach.  We have been working on a treatment targeting lexical preservation in progressive conditions like these (e.g., progressive nonfluent aphasia, semantic dementia).  I wonder how this approach would work among high level writers -- perhaps pairing behavioral treatment with an acetylcholinesterase inhibitor.  Email if you have any thoughts on this.

modeling word concreteness

Here we have a 3d scatterplot representing the spread of a set of 400 abstract and concrete English nouns within a multi-dimensional space bounded by three broad cognitive domains (magnitude, sensation, emotion)​.  Abstract words are reflected by the black bubbles, and concrete words are the red bubbles. Their positions in this x,y,z plane reflect ratings from almost 400 adults from Amazon's Mechanical Turk. It's interesting -- Abstract and concrete words cluster in unique ways in this space.  We're arguing that a multi-dimensional 'topography' approach like this obviates the need for multiple semantic systems (e.g., verbal for abstract words, visual for concrete words).  The other neat thing about this approach is that deficits in concrete or abstract word representation can be modeled in terms of dimensionality reduction (e.g., a sensory impairment might reduce the dimensions to only magnitude and emotion).   We just submitted this article for review. Its recent ancestor was just also published in Frontiers in Human Neuroscience. Here's the R code for generating this 3d scatterplot using the rgl package: 

Congratulations, graduates

grads.jpg

We're pleased to announce that this semester we saw four of our very helpful seniors graduate with a major in Communication Sciences and Disorders. All will be continuing their studies at graduate school. Samantha Morrill will pursue her Doctor of Audiology here at UF. Melissa Salzberger will be heading back home to New York to Hunter College work toward her master's in Speech Language Pathology. Jayna Becker will be Temple University to obtain her master's in Communication Sciences and Disorders. Finally, Catherine Kadechka will remain at UF to pursue her master's in Communication Sciences and Disorders. Congratulations and good luck! We will miss you all. 

Starting a semantic society

literary.jpg

I plan on starting a semantic society in a few months when I move to Philadelphia.  I envision something akin to Paris in 1925 where a bunch of authors (e.g., Hemingway, Fitzgerald) lounged in cafes and waxed existential. My dream is to have the society meetings at my ramshackle house. We have an old manual typewriter upon which  members will 'tweet' messages.  I will then post the minutes online. Maybe we will eventually generate Proceedings of the Philadelphia Semantics Society.  Wine and cheese served.